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The gene is out of the bottle: the communication of genetic complexity in direct-to-consumer genetics

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The gene is out of the bottle: the communication of genetic complexity in direct-to-consumer genetics

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Content THE GENE IS OUT OF THE BOTTLE: THE COMMUNICATION OF GENETIC
COMPLEXITY IN DIRECT-TO-CONSUMER GENETICS
by
Zoltan P. Majdik
______________________________________________________________________
A Dissertation Presented to the
FACULTY OF THE GRADUATE SCHOOL
UNIVERSITY OF SOUTHERN CALIFORNIA
In Partial Fulfillment of the
Requirements for the Degree
DOCTOR OF PHILOSOPHY
(COMMUNICATION)
August 2008
Copyright 2008 Zoltan P. Majdik
"It used to be said, in the nineteenth century, that we would never know
of what the stars are made, since we could never visit them.
We all can see how foolish a prophecy this was."
- Francis Crick, Of Molecules and Men
ii
Acknowledgments
To acknowledge everyone who, in some form or another, contributed to this dissertation
would not only be an exercise in futility but also demand at least one additional chapter
to be added. Alas, too many trees already have given their arboreal lives for this work,
so without further ado, with many apologies to those who won't find themselves named
here, and with an arsenal of adjectives that otherwise would never find their way into
academic writing, my thanks go out to my fantastic advisor Tom Goodnight for his
unrelenting enthusiasm, never-ending curiosity, and always patient mentoring; to
Stephen O'Leary for the many exquisitely brilliant thoughts he shared with me over the
years I've known him; to Randy Lake for the thoughtful guidance he gave me into the
history, theory, and practice of being a scholar of rhetoric; to Tom Hollihan for being a
great teacher, captivating thinker, and formidable backgammon player; to Nina
Eliasoph, whose sparkling insight and wit never fail to amaze me; and to Walt Fisher
for his guidance, kindness, and generosity. I'm truly honored to be able to call you my
colleagues and friends.
Thanks to the Annenberg School for Communication at USC for its continued support
and for providing an intellectually stimulating, friendly, and supportive environment
that, as an added bonus, never ran dry of free food. And thanks to my friends and fellow
graduate students for the lively discussions in and out of seminars, for enjoying with me
iii
innumerable cups, carafes, and convenient pods of coffee on the patio, and for exploring
the many lunch options on, near, and far from campus.
Thanks to my family, who always supported my academic aspirations, even when it
took me an ocean and nine time zones away from them.
Thanks to Carrie Anne, for encouragement, support, iced coffees, perspective, walks,
talks, and giving me a sense of what's truly important in life.
iv
Table of Contents
Epigraph ii
Acknowledgments iii
Abstract viii
Chapter I
The Rhetorical Problem of Genetic Complexity 1
Toward State-of-the-Art Communication in Biotechnology 4
The Integration of Genetic Biotechnology into Social Practice:
An Overview 12
The Risks of Applied Genetics 14
The Proliferation of Applied Genetic Technologies 17
The Direct-to-Consumer Marketing of Applied Genetic
Technologies 22
The Problem of Genetic Determinism 27
Genetic determinism 30
Genetic underdeterminism 34
The problem of agency 36
Methodology & Typology of DTC Genetic Services 37
Health-Related DTC Genetics 38
Non-Health DTC Genetics 39
Hybrid DTC Genetics 40
Representative Tests for Health and Non-Health Services 41
Literature Review: Nature, Society, and the Question of Agency 43
Historical Snapshot 44
Theorizing and Defending the Contested Mediation
Between Nature and Social 47
The sociological tradition 47
The rhetorical tradition 51
The question of agency 57
Chapter II
The Language of the DTC Genetics Market 72
The Field of DTC Genetics 75
The Health-Related DTC Genetics Market 75
Taking a health-related DTC genetic test 76
Benefits and risks 80
The case of hemochromatosis 86
v
The Non-Health DTC Genetics Market 90
Taking a non-health DTC genetic test 91
A popular choice: ancestry tracking 94
The Communicative Steps of DTC Genetics 99
Communicating Genetic Complexity 102
The Texts Behind Hemochromatosis and Ancestry Testing 104
The informational step 104
The transactional step 105
The evaluative step 106
Synecdoche for Communicating Health-Related Test Results 108
Comic Framing in Informed Consent Protocols 116
Diachronicity and Genetic Risk 123
Metaphors for Shaping Ancestral Narratives 129
Rhetorical Situation and the Multiple Audiences of a
Genetic Test 138
Normative Implications 142
Chapter III
Contesting and Regulating the Market Language of DTC Genetics:
The Nonmarket Actors 146
Federal Legislation 149
Privacy Legislation 151
Executive Order 13145 151
The Genetic Information Nondiscrimination Act 152
The necessity of moving beyond privacy 156
Pushing Past Privacy: The Secretary's Advisory Committee
on Genetic Testing 160
The 2000 SACGT recommendations 161
The 2007 SACGHS recommendations 173
Medicine 177
The Case for DTC Genetics in Medicine 178
The American College of Medical Genetics Statements 182
The 2004 statement 183
The 2007 statement 184
The 2008 statement 186
Public Advocacy 187
The Scope of Genetic Public Advocacy 188
Addressing DTC Genetics: The Genetics & Public
Policy Center's Issue Briefs 191
Putting the Actors on the Stand: The 2006 Senate Hearings 195
The Market Actors 196
The Nonmarket Actors 197
vi
Predicaments of Institutional Polysemy: Clashing Conceptions
of Agency 204
Chapter IV
The Risks of DTC Genetics 210
Boltanski and Thévenot's Common Worlds 214
Common Grounds for Justification 215
The Dynamic Nature of Worth 217
Deficiencies of Justification 220
Normative Stresses on the Communication of Genetic Complexity 226
The Cost of the Market World: Risk of Physical Harm 226
The market world 226
Risks of physical harm in the market world 228
The Cost of the Domestic World: Identity Risk 232
The domestic world 232
Identity risks in the domestic world 236
The Cost of the Civic World: Consent Risk 246
The civic world 246
Consent risks in the civic world 252
The Cost of the Technological World: Privacy Risk 261
The technological world 261
Privacy risks in the technological world 266
The Missing Worlds 272
Communicative Norms for Best Practices in Biotechnology 276
Chapter V
Implications & Conclusion 281
Synopsis: Conventions of Communicative Practice in DTC Genetics 283
Emerging Developments in DTC Genetics 287
Full-Genome Sequencing 288
Genetic Social Networking 293
Direct Advertising 296
Pharmacogenetics 300
Beyond DTC Genetics: Communicative Practice in Biotechnology 304
State-of-the-Art Communication in Biotechnology 308
Bibliography 315
vii
Abstract
This dissertation interrogates norms of state-of-the-art communication for direct-to-
consumer (DTC) genetic services. It finds that the introduction of DTC genetics disrupts
settled norms of social practice. Analysis of texts designed to repair norms and situate
genetic complexity in relation to existing medical and social practices discovers that the
communicative conventions employed by the market, legislators, medical organizations,
and public advocacy groups clash over how they vest agency in language. The clash
between polysemous, contending institutional languages magnifies complexity and puts
at risk the function of communication at the core of a rhetorical practice: the creation
and maintenance of the communitas. Asking how emerging new biotechnological
practices can be integrated into the social space, the dissertation extends inquiry into the
recovery of human agency as critical to emerging new biotechnological practices and
argues that norms for state-of-the-art communication for biotechnology must evolve
from a sensibility toward language as rhetorical that assembles polysemous, contending
institutional languages within a broad communicative context.
viii
Chapter I
The Rhetorical Problem of Genetic Complexity
Few things, in nature and in society, identify us as individuals more uniquely
than our genetic fingerprint. At the same time, genes provide strong links between us
and the social groups around us: the families we belong to, the ethnic groups we
identify with, and the geographical locations our ancestors inhabited. Genetics
unmistakably defines us as individual beings, while it just as unmistakably undergirds
our belonging to families, races, peoples, even humanity. This seemingly paradoxical
nature of genes and genetics guides this study.
The paradoxical way in which our genes reflect on us can be problematic, and it
carries risks. Consider the following example, featured in a 2006 New York Times story
on applied genetics. Chad Kingsbury, of suburban Chicago, knew he carried a genetic
mutation that already had killed many members of his family. He also knew that he and
his wife wanted a child, that his probability of passing on the genetic mutation was
50%, that the mutation increased the chance for developing colon cancer roughly
twentyfold, that the mutation would cause cancer around the age of 45, and that
someone developing cancer from this mutation would have about a 90% chance of
survival if the cancer was caught early enough. The Kingsburys knew that for a little
more than $25,000, in vitro fertilization and a procedure called Preimplantation Genetic
Diagnosis (PGD) allowed them to select an eight-cell embryo that would not carry the
1
genetic mutation, and they knew they would do so at the expense of a number of other
embryos.
What the Kingsburys did not know through the disarray of odds, qualifiers, and
the concurrent experience of losing another family member to colon cancer, and what
nobody could tell them, was whether they ought to act on the choice of using PGD.
Should they admit one embryo over a number of others to their family based solely on
its genetic makeup? From the ones that returned negative, which one should they select?
Should they act against their own concerns as well as the very real religious, fiscal, and
physical concerns of their families for the luxury of making choices for an unborn, non-
existent being? Should they favor the benefits of genetics for one individual over the
risks and harms to a larger group? When offered, should they add another test, e.g. for
Down Syndrome, for $2000, which then eliminates more embryos? Where should they
draw the line in designing and engineering their unborn child, and should they
exclusively consider what is best for the child, best for them, or best for a larger social
and legal precedent? If they choose to go through with PGD, should they re-screen the
16-week old fetus because the chance of PGD having failed is as high as 3%? If so,
what would they do if the PGD had indeed failed? If the genetic mutation was not for
colon but instead for breast cancer, would they select the gender of the unborn child
based on its lower probability for a specific cancer? And: how will they tell the child
they choose the story of how it came to be born?
2
These questions highlight some of the risks and challenges brought on by the
advent of widely available applied genetic technologies. What is best for the individual
clashes with the social space in which genetically linked families and larger public
groups coexist, while complex mathematical probabilities impede the ability to evaluate
risks accurately and make prudent choices. For the Kingsburys, "the burden of playing
God has been trumped by the near certainty" of their child's cancer-free life, and they
chose to use PGD, chose to test for Down Syndrome as well, and when she is going to
be old enough, they chose to tell their daughter Chloe about the circumstances of her
life.
1
Others may choose some aspects differently or reject all of them, worry about
whether practices of this kind amount to genetic engineering, or reject PGD as "as
unethical as abortion and perhaps more pernicious" and "'a pact with the devil.'"
2

Regardless of the choices made, what becomes increasingly clear is that knowledge of
one's genes can be a difficult burden to bear, no matter what the implications of that
knowledge might be.
3
This dissertation explores what is put at stake by direct-to-consumer (DTC)
marketed applied genetic technologies for the communicative interactions of individual
1.
Amy Harmon, "Couples Cull Embryos to Halt Heritage of Cancer," New York Times,
September 3, 2006, http://www.nytimes.com/2006/09/03/health/03gene.web.html (accessed
March 31, 2007, archived by WebCite at http://www.webcitation.org/5NW45swzM).
2.
Ibid.
3.
See e.g., Amy Harmon, "Facing Life with a Lethal Gene," New York Times, March 18,
2007, http://www.nytimes.com/2007/03/18/health/18huntington.html (accessed March 18, 2007,
archived by WebCite at http://www.webcitation.org/5NUdnHzu9).
3
persons who make use of it. It explores the paradoxical twin nature of genetics: how
genes uniquely define us as individuals and at the same time establish deep social
connections, how they are "ontologically anchored"
4
in our very being but require
complex epistemological, heuristic work to reveal themselves, how they vacillate
between biological predetermination and underdetermination, and ultimately, how they
give shape to institutional languages that try to respond to the challenges brought about
by genetic complexity but, in so doing, differ significantly and clash with each other. In
this dissertation, I argue that the tensions and incompatibilities between these dialectics
put stresses on communicative practices that put at risk the function of communication
at the core of a rhetorical practice: the creation and maintenance of a communitas.
Toward State-of-the-Art Communication in Biotechnology
This dissertation make a case for recognizing that norms for state-of-the-art
communication in biotechnology are necessary, and that these norms require a
sensibility toward language as rhetorical. The idea of norms here closely follows
Thomas Farrell's project of locating and reconstituting rhetorical norms and,
specifically, his contention that "norms are made available to practice through the still
developing conditions and conventions of what I will call rhetorical culture."
5
Jürgen
4.
Belinda Clayton, "The Human Genome Project: An Increasingly Elusive 'Human Nature,'"
Semiotica 155, no. 1/4 (2005): 250.
5.
Thomas B. Farrell, Norms of Rhetorical Culture (New Haven, CT: Yale University Press,
1993), 7.
4
Habermas discusses norms similarly: "norms are dependent upon the continual
reestablishment of legitimately ordered interpersonal relationships."
6
For both Farrell
and Habermas, norms develop through communicative interactions and ground the
moral, ethical, legal, personal, familial, and public practices that maintain a
communitas. Thus, the dissertation pursues how norms for state-of-the-art
communication are drawn from critical analysis of communicative conventions that
provide the foundation for grounding legitimate interactions among humans and, in the
case of biotechnology, nonhumans.
7
These practices of communication can become disrupted and fragmented,
however. As Farrell notes, conditions and conventions of communication are
developing; norms of communication that guide practice thus can, at times, be unstable.
For Habermas, interpersonal relationships can be illegitimate, which weakens the
legitimacy of norms used for the justification and grounding of action and interaction.
In the domain of biotechnology, instability is the result of complexity. Niklas Luhmann
identifies complexity as the imbalance between a (social) system and its environment. A
social system, he argues, can never perfectly mirror its environment and, thus, suffers
from a surplus of choices in regards to how it responds to its environment. For
6.
Jürgen Habermas, "Discourse Ethics: Notes on a Program of Philosophical Justification," in
The Communicative Ethics Controversy, ed. Seyla Benhabib and Fred Dallmayr (Cambridge,
MA: MIT Press, 1990), 66.
7.
Bruno Latour, Reassembling the Social: An Introduction to Actor-Network-Theory (Oxford:
Oxford University Press, 2005).
5
Luhmann, "complexity, in this sense, means being forced to select; being forced to
select means contingency; and contingency means risk."
8
For Luhmann and for others,
9

complexity is an evolving symbolic and material condition of change brought about by
contingent, unknown objects of nature that ask for integration into the social space and
create new risks that destabilize existing norms of conventional practice.
This sense of complexity characterizes the current state of DTC genetics. The
dissertation shows that in applied genetics and in particular in DTC genetics, a group of
institutions (namely, the market, legislation, medicine, and public advocacy groups)
respond to complexity by partaking in a heuristic mediation between this new
biotechnology and the uses to which individuals put it. Such communicative mediation,
the dissertation argues, is a core requirement for successful, state-of-the-art
communication in DTC biotechnology. Communication is necessary because the
complexity of genes as newly knowable objects of nature carries personal and public
risks (specifically, risks of physical harm, identity, consent, and privacy) and expands
the domain of uncertainty. Communicative practices can help create an understanding
of risk, prepare for the likelihood of unintended consequences, and thus justify,
8.
Niklas Luhmann, Social Systems, trans. John Bednarz and Dirk Baecker (Stanford, CA:
Stanford University Press, 1995), 25.
9.
Latour, for example, discusses the perplexity brought about by the social intersecting with
unknown dimensions of nature and the environment. See Bruno Latour, Politics of Nature: How
to Bring the Sciences Into Democracy (Cambridge, MA: Harvard University Press, 2004).
6
legitimate, and integrate the risks of this new biotechnology in social practices.
10
The
complexity Luhmann identifies generally as it relates to the environment here extends to
a complexity that relates to communication and asks how communicative practices can
situate environmental complexity in the context of existing social practice.
Genetic complexity here extends to communication complexity because the
conventions of communication practiced by multiple institutions have grown to stand in
external contention with each other. As a result, the dissertation argues, existing
conventions of communicative practice are insufficiently equipped to continue to
integrate the new and quickly growing field of DTC genetics legitimately and safely
into the medical and social practices of lay publics. This has happened without inquiry,
academic or otherwise, into what implications the clash between institutional languages
has on the individuals, families, and publics that participate in this new biotechnological
practice. Such inquiry, I believe, is critical for the legitimate and safe integration of
important new genetic biotechnologies into the social practices and life choices of
individuals, families, and publics. And it is critical for establishing and maintaining the
legitimacy of the institutional actors (market and nonmarket actors alike) that are
engaged in biotechnological practices. Thus, the stakes for inquiry into how and why
10.
Here, the study borrows a framework for conceptualizing risk from Mary Douglas and
Aaron Wildavsky who argue that thinking about risk involves recognizing physical dangers in
the environment and people's perception of that danger. Perception of physical danger
influences and shapes whether a risk is considered acceptable by the individual, public group, or
society. Thus, risk is at once a material and moral condition. See Mary Douglas and Aaron
Wildavsky, Risk and Culture: An Essay on the Selection of Technical and Environmental
Dangers (Berkeley and Los Angeles: University of California Press, 1983).
7
the multiple institutional languages are in contention are high, not only for the
individuals participating in DTC genetics, but also for the institutional actors involved.
At the core of communication complexity is the notion of agency. Agency in this
study refers to the grounds from which individuals, families, and publics can reach
decisions, evaluate actions, justify choices, and translate the results of DTC genetic tests
into the preexisting practices of their lives. Market and nonmarket languages are
polysemous
11
in where they situate the locus of agency: the place or site (i.e., the
individual, the family, healthcare experts, regulators) from which the making and
enacting of choices is framed as justified and legitimate.
12
This disagreement, the
dissertation argues, is where, underneath the various marketing, policy, and medical
claims, the languages of market and nonmarket actors are in contention. The inevitable
presence of genetic complexity fuels clash among institutional languages over where to
locate agency. Such clash puts stresses on communicative practices in DTC genetics,
magnifies rather than reduces complexity, and gives rise to risks rather than facilitates
the integration of complex genetics into private, familial, and public spaces. Thus, the
combination of contending languages expands the domains of personal and social
11.
For this dissertation, I use Leah Ceccarelli's definition of polysemy as "the existence of
determinate but nonsingular denotational meanings." See Leah Ceccarelli, "Polysemy: Multiple
Meanings in Rhetorical Criticism," Quarterly Journal of Speech 84, no. 4 (1998): 399.
12.
The issue of justification and legitimization serves as a grounding principle for this study.
Chapter IV expounds on how disagreement over where to locate agency causes tension in how
to justify decisions and, ultimately, gives rise to risks. In its discussion of justification and
legitimacy of choice and decision-making, this study draws from Luc Boltanski and Laurent
Thévenot's work on justification. See Luc Boltanski and Laurent Thévenot, On Justification:
Economies of Worth, trans. Catherine Porter (Princeton, NJ: Princeton University Press, 2006).
8
uncertainty, thereby challenging the adequacy of conventional, existing communicative
practice to integrate this new, complex biotechnology into social practice.
This challenge calls for a recovery of human agency and makes analysis of and
intervention in state-of-the-art communication necessary. Following Farrell's sense of
norms, the dissertation seeks to extend a rhetorical understanding of practice as a basis
for vesting agency in language in instances of biotechnological practice where
complexity disrupts established norms and agency is contested and unstable. This
recovery of rhetorical, human agency for the practices of biotechnology is necessary
because in its current state, DTC genetics is characterized by unsettled norms and
fragmented guides brought about by clashes among institutional languages over where
agency ought to be situated. These clashes destabilize and challenge communicative
relationships. Thus, following Farrell, the dissertation moves toward inquiry into the
normative problems of clashing institutional languages in biotechnological practice and
reads practices related to a biotechnology as polysemous. To ask how polysemous
practices can form a communitas, this inquiry assembles communicative practices not as
singular, discrete perspectives from market and nonmarket actors but instead as one
broad, contested context from which participants of DTC genetic services draw.
These perspectives set up the guiding question for this study: how to constitute
the norms and practices of state-of-the-art communication that can safely and
legitimately integrate a biotechnological practice into the lives of individuals, families,
and publics. This is not to imply that norms for state-of-the-art communication within
9
singular, discrete institutions are not contested and multidimensional but that, during
times of stability, relations between multiple dimensions of a practice are known and
expectations are set accordingly. The introduction of a radically new biotechnology like
DTC genetics destabilizes these norms and requires communication to deal flexibly
with the continuously evolving challenges, unintended consequences, and sense of
uncertainty that accompany the introduction of new biotechnologies. This state of
perplexity can be productive, as it opens new spaces for thinking about the self and the
existing social space in relation to new possibilities opened by scientific discovery. But
for perplexity to be productive, state-of-the-art communication must be able to move
from contentious controversy that accompanies the emergence of new biotechnologies
toward a more reflective state where grounds can be validated, norms settled, and new
biotechnologies situated in relation to existing social practices. To date, the
communicative conventions of institutions involved in DTC genetics remain in
contention and there is little indication that the status quo will change anytime soon.
This inquiry into polysemous institutional languages raises difficult
methodological questions. The study of rhetoric lends itself to grounding state-of-the-art
norms of communication that can evolve from a broad context of contending
institutional perspectives, as rhetoric historically has been concerned with contingent,
uncertain issues and its study cultivates a sensibility toward multiple, contending
contexts. Traditionally, rhetorical analysis of scientific texts has focused on how
technical and scientific spheres interact with the public, either unilaterally or
10
bilaterally,
13
or how scientists interact, either within or between sciences.
14
As a
rhetorical practice, the communicative practices of translating complex science in DTC
genetics partake of both: communication can take place between experts and lay
publics, or it can take place between different institutional sites like the market,
legislation, and medicine. Because the multi-institutional nature of DTC genetics
distributes the texts produced by this field across multiple institutional sites, inquiry into
the heuristic, rhetorical texts that underlie the field of DTC genetics stretches
methodological conceptions that presuppose a direct communicative link between two
or more parties. Thus, Steven Katz's call for a renewed focus "on the important role that
language itself plays in the perception, reception, and understanding of science and risk
assessment"
15
proves important to this study. Similarly, Katz and Carolyn Miller argue
that a rhetorical model for communication cannot be the "linear schematic diagram of
communication components, like the engineering model, but a conceptual approach that
13.
See e.g., G. Thomas Goodnight, "The Personal, Technical, and Public Spheres of
Argument: A Speculative Inquiry Into the Art of Public Deliberation," Journal of the American
Forensic Association 18, no. 4 (1982): 214-27; Steven B. Katz and Carolyn R. Miller, "The
Low-Level Radioactive Waste Siting Controversy in North Carolina: Toward a Rhetorical
Model of Risk Communication," in Green Culture: Environmental Rhetoric in Contemporary
America, ed. Carl G. Herndl and Stuart Brown (Madison: University of Wisconsin Press, 1996).
14.
See e.g., John Lyne and Henry F. Howe, "'Puncuated Equilibria': Rhetorical Dynamics of a
Scientific Controversy," Quarterly Journal of Speech 72, no. 2 (1986): 132-47.
15.
Steven B. Katz, "Language and Persuasion in Biotechnology Communication With the
Public: How to Not Say What You're Not Going to Not Say and Not Say It," AgBioForum 4, no.
2 (2001): 93.
11
examines the suasory dimension of language and its use in particular situations."
16
This
rhetorical model "cannot produce predictive rules, but rather evolves heuristic
guidelines."
17

The search for norms of state-of-the-art communication for biotechnological
practice thus cannot be concerned with the discovery of a linear, predictive model of
communication. Rather, examining the conventions of communication practiced by
market and nonmarket actors is an inquiry into how language itself can function as a
state-of-the-art heuristic to communicate, translate, and eventually integrate complex
science into existing social spaces and practices. The next section sets the stage for this
inquiry. It discusses what applied genetic technology is, how DTC genetics emerged as
an important but often underemphasized subset of applied genetics, why the
communication and translation of complex genetics into lay practice is a core
requirement of state-of-the-art communication, and why popular misperceptions about
the nature of genes complicate existing norms of communicative practice.
The Integration of Genetic Biotechnology into Social Practice: An Overview
As applied genetic technologies begin to enter the public realm and become part
of the social and medical practices of individuals, the kinds of questions the Kingsbury
family faced will become increasingly common. A growing number of individuals,
16.
Katz and Miller, "Low-Level Radioactive Waste Siting Controversy," 132.
17.
Ibid.
12
families, and groups soon will have to answer questions about how they want to use
applied genetic technologies and how they can justify their uses. These are questions
that will become intricately tied up with new scientific discoveries and genetic
technologies and fuel the increasing knowledge of and uses for the human genome.
Already, new genetic mutations are linked to new types of health and social information
every day, while applied genetic technologies that translate and make use of this
information have begun to move out of laboratories and clinics into households, over-
the-counter pharmacies, and even web 2.0 social networking applications.
This following sections first discuss some of the risks that are introduced by the
use of complex applied genetic biotechnology in general. These risks carry a normative
and, following Douglas and Wildavsky,
18
moral dimension: they ask less how we put
the newfound possibility of knowing about our genes into practice and more whether we
ought to. These questions are exacerbated by a common distortion in how we
understand genes: genetic determinism and underdeterminism. The chapter goes on to
outline the subfield of direct-to-consumer genetics, and discusses the methodological
issues made apparent by analyzing the discursive elements of multiple institutional
sites. A close emphasis on the role of language in integrating objects of nature -- such as
the newly found knowledge of our genes -- into social spaces and practices foregrounds
the concept of agency, which leads to a third part. This third part argues that the
integration of new scientific discoveries into the lives of social groups has been
18.
Douglas and Wildavsky, Risk and Culture.
13
discussed in the literatures of both sociology and rhetoric, but that a consideration of
agency as a problematized concept that emerges from competing institutional languages
needs to be extended into the literatures of these fields.
The Risks of Applied Genetics
The difficult questions put at stake in the opening example give a glimpse of the
range and depths of risks involved in using genetic biotechnology. Advances in applied
genetic science and technology introduce not only benefits but also bring risks to the
integration of genes as newly knowable biological objects into existing social practices.
Risks are present whenever new objects from nature and the environment are integrated
into the social space. Frequently, these risks are invisible and revealed only when the
integration of such a new object goes awry or fails, and when social actors perceive
(rightly or wrongly) that they can make choices about how to integrate such a new
object into their midst and about whether or not to accept the risks associated with it.
19

The integration of the science of nuclear physics through technologies that create usable
nuclear power into the homes of millions, for example, has come with great benefits.
But from Chernobyl to Three Mile Island, disruptions of this process made visible the
risks both for the health of individual persons and for national and global politics. The
19.
See e.g., Douglas and Wildavsky, Risk and Culture; Jane Gregory and Steve Miller, Science
in Public: Communication, Culture, and Credibility (New York: Perseus Publishing, 2000);
Cass R. Sunstein, Risk and Reason: Safety, Law, and the Environment (Cambridge: Cambridge
University Press, 2002).
14
same dialectic between risk and benefit can be found in chemistry (e.g., drinking water
purification), molecular biology (e.g., vaccination), aerospace engineering (the errant
spy satellite shot down by the U.S. military in early 2008), or agricultural science (e-coli
contaminations of everything from beef to spinach). In all of these examples, scientific
discoveries and technological applications came with a range of significant benefits. But
each time, the risks of integrating these sciences and technologies into social spaces
made a similarly strong impact on the lives of people. Applied genetics is no different:
it promises great benefits, but also comes with risks.
These risks are not only physical. Applied genetics exposes its users to risks
beyond physical harm that can extend to the material consequences of privacy, identity,
and consent issues. What is put at stake by the use of applied genetic biotechnology is
as much (or more) the disruption of lifestyles and family lives, of self- and cultural
identities, and of rights to livelihood, care, and economic well-being held by individual
persons and larger groups as the possibility of causing physical harm. These material
risks carry extensive ramifications. A recent panel of bioethicists at Harvard University
made clear the stakes in what they termed "the makings of an ethics debate on
enhancing humanity:" "on the one hand, biotechnology raises hopes for dramatic
improvements [...] On the other hand, biotechnology raises fears of a 'Brave New
World' ... in which the human essence is lost."
20

20.
B. D. Colen, "Legal, Ethical Limits to Bioengineering Debated," Harvard University
Gazette, 2007, http://www.news.harvard.edu/gazette/2007/03.22/09-biodebate.html (accessed
March 23, 2007, archived by WebCite at http://www.webcitation.org/5NYqakVfM).
15
To illustrate the generational and personal issues on a prominent example, the
choice to make use of genetic biotechnology to test for Huntington's disease can predict
the eventual onset of the disease with near certainty. But the lack of options for
prevention or intervention makes this knowledge a difficult burden to bear and has "the
potential to be stigmatizing or psychologically harmful." The choice of taking the
genetic test is "thus highly personal."
21
Yet, the risks of this choice go beyond the
personal. The use of genetics to diagnose the disease necessarily implicates family
members as well. A choice made by the individual to make use of applied genetic
technology can have direct biological implications on family members (because they
too now potentially have to carry the burden of knowing about the high possibility of
carrying the mutation themselves) or indirect implications (because they know that they
will need to change their way of living to accommodate the other's impending illness).
22

These risks are not limited to testing for Huntington's disease. As knowledge of
the human genome increases, so will the range and depth of risks like the ones that
require consideration for Huntington's disease testing. Choosing to use and being able to
justify the use of applied genetic technology thus cannot be grounded in empirical
calculation only. The choice to use applied genetic technology, and the justification of
choosing to do so, require a consideration of risks that also are ethical and moral. These
21.
Wylie Burke, "Genetic Testing," New England Journal of Medicine 347 (2002): 1868-1870.
22.
Ibid.
16
risks are at once "highly personal"
23
and make the action of using applied genetics
dependent on the preferences, beliefs, and view of the individual, while at the same time
they are contextual and social, as they require moral considerations about the
involvement of family members and larger genetically linked groups. Scientific and
technological developments, coupled with increasing market demand, will make
obsolete questions about whether we can test ourselves for genetic predisposition to
specific diseases, trace our heritage, intervene in manifold ways in our natural genetic
makeup, use our genetic information as a highly secure personal identifier instead of
more traditional biometrics, provide our unborn children with a better chance for
favorable genes, or receive custom-tailored diet recommendations based on our
genomic information. Instead, what these development will ask of us is whether we
should pursue these possibilities. As the field of applied genetic biotechnology
increases, so will the the immediacy and relevance of the risks it brings with it, and so
will the need to respond to them. The next section addresses this growth in the field of
applied genetic biotechnology.
The Proliferation of Applied Genetic Technologies
The emphasis put on the risks of applied genetic technology may sound
hyperbolic at first, but the depth, breadth, and growth of this still young field underline
the stakes. Genetic technologies have begun to extend recent advances in genetic
23.
Ibid.
17
science into the everyday lives of a wide range of different communities. A study from
the Johns Hopkins Genetics Policy Institute finds not only that aforementioned
Preimplantation Genetic Diagnosis (PGD) services are offered by 3/4th of all in-vitro
fertilization (IVF) clinics, and that roughly 6% of IVF cycles run through PGD, but also
that an estimated 42% of IVF clinics offer PGD for sex selection.
24
And PGD is only
one example of a larger field with increasingly wide appeal and increasingly easy
accessibility. Genetic services like PGD are accessible to many through well-established
clinics. Over-the-counter genetic testing kits have become available in various countries
amidst much controversy. And online businesses now offer genetic testing and other
services directly to consumers.
The booming market for applied genetic technology has alerted a number of
groups and institutions to the risks to which this new type of biotechnology exposes lay
persons.
25
Public advocacy groups have emerged to caution, educate, and advise clients
of genetic services about the use of genetic services and technologies. A few medical
organizations have issued statements and briefs advising patients how to manage and
use this new technology. And an increasing number of legislative hearings, bills, and
directives vie to regulate and influence the choices consumers can make when it comes
to genetic services. Passing legislation about applied genetic technology has proven to
24.
Susannah Baruch, David Kaufman, and Kathy L. Hudson, "Genetic Testing of Embryos:
Practices and Perspectives of US In Vitro Fertilization Clinics," Fertility and Sterility (2006).
25.
For an overview, see Burke, "Genetic Testing."
18
be difficult, however. Laws against genetic discrimination, for example, met with little
success. Early successes, like the inclusion of protection for "genetically disabled"
persons in the 1990 Americans with Disabilities Act or President Clinton's Executive
Order 13145 that prohibited the use of genetic information for Federal Government
employment purposes,
26
could not maintain their momentum in gaining wider reach
through Congress. Despite widespread support, the 2003 Genetic Information
Nondiscrimination Act (GINA), passed 95-0 by the U.S. Senate, never made it past the
House of Representatives. In 2005, GINA again passed Senate 98-0, but failed to
become law. On January 16, 2007, GINA finally was introduced in the House, and was
signed into law in 2008.
27
Legislative efforts like these were designed to allow individuals to make use of a
nascent market of genetic technologies designed and personalized for individuals. In the
midst of debate over the Senate privacy bill, the Congressional Quarterly noted in May
of 2003 that "supporters say the bill will enable individuals to take advantage of
advances in genetic testing without fear of discrimination."
28
Indeed, fear of genetic
discrimination is widely seen as a central impediment to more widespread use of
26.
William J. Clinton, "Executive Order 13145 -- To Prohibit Discrimination in Federal
Employment Based on Genetic Information," Federal Register 65, no. 28 (2000): 6875-80.
27.
Chapter III discusses the voices of legislation, medicine, and public advocacy in more
detail.
28.
Kelly Field, "Misuse of Genetic Information is Target of Senate Privacy Bill," CQ Weekly,
2003, http://library.cqpress.com/cqweekly/weeklyreport108-000000706233 (accessed May 24,
2008).
19
personalized genetic services
29
: individuals may forego the possibility of knowing about
their genetic predisposition and use it to engage in preventive health practices when as a
consequence the fear of work or insurance discrimination threatens. With GINA in a
seemingly persistent limbo and unable to create effective oversight legislation, Congress
scheduled hearings in 2006 to gather information about the then already mushrooming
business of selling genetic services directly to individuals. With little consequence: no
legislation has emerged from the hearings to effect regulation or oversight over the use
of applied genetic technology by individual persons. The FDA has recognized the
importance of creating oversight for personal genetic testing in its Critical Path
Initiative. The CDC's push into genetic testing recognizes genetic testing as a potential
public health issue and provides promising measures with EGAPP
30
and ACCE.
31
But
neither FDA nor CDC have to date been able to effect legislative oversight or regulation
29.
See e.g., Amy Harmon, "Insurance Fears Lead Many to Shun DNA Tests," New York
Times, February 24, 2008, http://www.nytimes.com/2008/02/24/health/24dna.html (accessed
February 24, 2008); "Personalized Medicine Coalition Supports President Bush’s Call to
Congress to Pass the Genetic Information Nondiscrimination Act," Personalized Medicine
Coalition, 2007, http://www.personalizedmedicinecoalition.org/communications/
pr_2007-1-17.php (accessed February 7, 2007, archived by WebCite at http:/
/www.webcitation.org/5MUE6y1ip).
30.
National Office of Public Health Genomics, "Evaluation of Genomic Applications in
Practice and Prevention (EGAPP): Implementation and Evaluation of a Model Approach,"
CDC, 2007, http://www.cdc.gov/genomics/gtesting.htm (accessed March 7, 2007, archived by
WebCite at http://www.webcitation.org/5NAp5Tcon).
31.
"ACCE: A CDC-Sponsored Project Carried Out by the Foundation of Blood Research,"
CDC, 2007, http://www.cdc.gov/genomics/gtesting/ACCE.htm (accessed March 7, 2007,
archived by WebCite at http://www.webcitation.org/5NAp5fwJf).
20
either. Uncertainty over whether, how, and how strongly applied genetic tests are
regulated thus is widespread.
Despite regulatory uncertainty, and even though regulatory controversy still
routinely surrounds genetic services like nutrigenetics,
32
a recent Wall Street Journal/
Harris Interactive poll revealed that the U.S. population is ready and willing to use
genetic technologies. Thus far, few have made the move to incorporate applied genetic
technologies into their lives. But a large majority indicates that they would eventually.
The poll reports that while only 5% of the U.S. population had taken a genetic test, 93%
of the U.S. population generally is supportive of genetic science and technologies.
33
The
popularity of the idea of being able to make use of applied genetic technology, coupled
32.
Unmesh Kher, "Can a DNA Test Tell You How to Live Your Life?," Time Magazine,
August 1, 2006.
33.
"Public Overwhelmingly Supportive of Genetic Science and Its Use for a Wide Variety of
Medical, Law Enforcement and Personal Purposes; Most U.S. Adults Are Opposed to Its Use
By Employers and Insurers," Wall Street Journal Online/Harris Interactive, 2006, http:/
/www.harrisinteractive.com/news/newsletters/wsjhealthnews/WSJOnline_HI_Health-
CarePoll2006vol5_iss14.pdf. The poll identified that the use of genetic science was supported
by 93% for purposes of law enforcement to identify criminals, by 92% for paternity testing, by
91% to research new cures and preventive measures for diseases, by 88% for identifying
patients at risk for specific diseases, by 87% for therapy for those who have or may get a
disease, by 85% for ancestry tracing, and by 72% for screening potential parents at fertility
clinics to detect inherited diseases or "genetic weaknesses." On the other hand, uses of genetic
science and personal genetic information by insurance companies and employers was widely
opposed by roughly 80%. See also "U.S. Public Opinion on Uses of Genetic Information and
Genetic Discrimination," Genetics & Public Policy Center, April 24, 2007, http:/
/www.dnapolicy.org/resources/GINAPublic_Opinion_Genetic_Information_Discrimination.pdf
(accessed June 7, 2007, archived by WebCite at http://www.webcitation.org/5PQQKLXFY).
For parents' view on genetic testing and storage of their children's DNA despite the lack of
effective treatment options, see Krista Hopson, "Parents Support Genetic Testing, DNA
Biobanks - Even Without Effective Treatments," University of Michigan Health System, 2007,
http://www.med.umich.edu/opm/newspage/2007/poll4.htm (accessed June 21, 2007, archived
by WebCite at http://www.webcitation.org/5PlkSvJ9n).
21
with lax regulatory oversight, has led a few dozen companies to realize that the use of
applied genetic technologies need not be restricted to the clinical and laboratory space.
Instead, they recognized that marketing and selling applied genetic technology directly
to clients could become a lucrative enterprise. This enterprise is what often is referred to
under the rubric of DTC genetics.
The Direct-to-Consumer Marketing of Applied Genetic Technologies
This dissertation focuses on DTC genetics as a particular subgroup of applied
genetic technology because the accessibility, ease of use, and potential of DTC genetics
likely will make the use of DTC genetic technology a widespread, common practice in
the near future. Already in its current state as a nascent technology, DTC genetics
accentuates tensions among the rights of individuals, families, groups, and collectives
over who has the power to make choices and decisions. In its current, nascent state,
DTC genetics gives insight into how a new biotechnological practice is being integrated
into the lives of individual persons, families, and groups. As such, it not only provides a
window into the possibilities and risks of integrating complex science through
technology into the existing social practices of individuals and groups. It also allows for
an intervention into this integration.
Applied genetic technology marketed and sold directly to individual customers
promises to bring the benefits of applied genetics quickly and cost-effectively to the
general population. At the same time, however, the risks introduced by applied genetics
22
in general are magnified in the field of DTC genetics. DTC genetic services have been
on the market for a relatively short number of years, and they provide often
inexpensive
34
access to genetic services for everyone with internet access, mailing
address, and credit card.
35
Their potential for business success is reflected in popular
news media. Wired discusses how at-home DNA kits offered by amazon.com and
target.com have pushed one company's sales up by 40%, and how some companies now
even market DNA kits for the "baby-shower gift market."
36
The Los Angeles Times calls
direct-to-consumer genetic testing "a booming and controversial subset of the $6-billion
genetic testing and molecular diagnostics business."
37
Scientific American argues that
"our society is already beginning to enjoy the fruits of this new form of information,"
but warns that "scurrilous entrepreneurs are also, predictably, beginning to offer
unreliable DNA tests or bogus interpretations of the data."
38
The New York Times
discusses the fast pace of legitimate or illegitimate products "in the rapidly expanding,
34.
Some DTC genetic tests can be bought for just over $100, while the more expensive ones
run between $3000-4000.
35.
For a more detailed discussion of what is involved in the practice of DTC genetics, see
Chapter II.
36.
Randy Dotinga, "Home DNA Tests Just a Click Away," Wired News, September 1, 2005,
http://www.wired.com/news/medtech/0,1286,68692,00.html (accessed February 19, 2007,
archived by WebCite at http://www.webcitation.org/5MmWXxEbF).
37.
Judy Foreman, "Genetics for the DIY Set; Will I Get Cancer? Should I Take Zinc? At-
Home Gene Tests Say You They'll Tell You -- But Their Advice Is Often Suspect," Los Angeles
Times, August 21, 2006.
38.
"Caution: Sharp Edges," Scientific American, April, 2007.
23
chaotic and largely unregulated world of direct-to-consumer genetic testing, an industry
at the confluence of two of the greatest of recent technological achievements — the
Human Genome Project and the Internet."
39
DTC genetic tests even were the cover story
of a nationwide news magazine.
40
Reports about DTC genetic services like these praise their wide availability and
potential, but none of them neglect to discuss their more problematic sides. Privacy,
reliability, validity, quality, immediate usefulness, abuse, and understandability often
are cited as anything from problematic to dangerously lacking. These concerns are not
limited to the news media. Academics and legislators have started to pay attention to
emerging practices of using DTC genetics as well. In 2003, a survey of DTC genetic
tests on the internet found that companies offering health-related DTC genetic services
frequently neglect to address openly the risks associated with genetic services, and less
than half discuss counseling or offer counseling options.
41
Some have discussed the
complex ethical, legal, and social issues that come specifically from offering DTC
genetic services.
42
Others worry about the lack of regulation and oversight when it
comes to potentially misleading and exploitive advertising of DTC genetic services that
39.
Andrew Pollack, "The Wide, Wild World of Genetic Testing," New York Times, September
12, 2006, http://www.nytimes.com/2006/09/12/business/smallbusiness/12genetic.html (accessed
March 1, 2007, archived by WebCite at http://www.webcitation.org/5N1k9c8Wt).
40.
Nancy Shute, "Reading Your Genes," U.S. News & World Report, January 8, 2007.
41.
Sarah E. Gollust, Benjamin S. Wilfond, and Sara C. Hull, "Direct-to-Consumer Sales of
Genetic Services on the Internet," Genetics in Medicine 5, no. 4 (2003): 332-37.
42.
Bryn Williams-Jones, "Where There's a Web, There's a Way: Commercial Genetic Testing
and the Internet," Community Genetics 6, no. 1 (2003): 46-57.
24
builds on overly deterministic views of genetics and ignores the complex probabilities
underlying them.
43
Despite their relative obscurity and the risks they carry, to deny DTC genetic
services their compelling raison d'être would be a mistake. A Scientific American
editorial makes the point that "as with other forms of personal information, over which
we are willing to trade some measure of control for benefits [...] genetic information
will offer powerful rewards and some risks."
44
Unlike clinically or otherwise
administered genetic services, DTC genetic services make available to the everyday
client the vast benefits and potential of the genomic age with as little interference and as
few hurdles as possible. They can empower clients by giving them knowledge about
themselves that they could not have had otherwise: knowledge that can range from their
susceptibility to specific health conditions to their resistance to specific drugs or
personalized ancestral information about their family roots. Individuals can make use of
cutting-edge genetic technology from the comfort of their homes. They can educate
themselves, select, purchase, go through, and receive results from genetic tests. They
can tiptoe into the ontological depths of who they are. Or they can tap into a reservoir of
potential health risks, knowledge of which allows them to maximize their preventative
health practices. Thus, DTC genetics magnifies the complexity of applied genetics in
43.
Sarah E. Gollust, Sara C. Hull, and Benjamin S. Wilfond, "Limitations of Direct-to-
Consumer Advertising for Clinical Genetic Testing," JAMA 288, no. 14 (2002): 1762-67.
44.
"Caution: Sharp Edges."
25
general: it opens up the possibilities and benefits of applied genetic technologies to
regular clients and customers from the comfort, privacy, and anonymity of their own
homes but, in so doing, it must remove many of the institutional safeguards that
translate scientific complexity and mitigate the risks of using applied genetic
technologies within a clinical, controlled setting.
Reaping these benefits while at the same time being aware of the risks creates an
acute requirement for lay individuals to understand the complexities of genetic
technology and the consequences of complexity for choosing a genetic test. The burden
of this requirement is not insignificant. Genetic tests available directly to the public,
genetics experts say, often are so complex that consumers need a doctor or even a
genetic counselor to help them interpret the results.
45
Because the practice of DTC
genetics is driven by the benefits of anonymity and privacy that a DTC business model
can give to clients, however, the communication of complex genetic science to lay
audiences cannot take place through genetics experts and counselors. Nor can this
communication be tailored to the specific individual and familial contexts of a client:
necessary knowledge about whether clients have access to healthcare or have family
member that might be impacted by results are missing from the communicative
interactions of a DTC genetics practice.
DTC applied genetic technologies create a polarity where the benefits of genetic
technologies clash with their risks and force choices that are not easily calculable.
45.
Pollack, "The Wide, Wild World of Genetic Testing."
26
Instead, the choice to use applied genetic technology is dependent on values,
preferences, shared agreements, and uncertain contingencies: in other words, choice is
grounded not in whether the technology can be used, but in whether it ought to be used
given the individual person's contextual circumstances or a larger group's shared
understanding of its members' rights and obligations. As a result, choices made and
actions taken regarding this new biotechnological practice cannot be grounded in the
certainty of episteme but instead rely on the contingent nature of doxa
46
that grounds
and shapes social practices. Thus, communicative practices must bridge the space
between complex nature and the social. In this sense, communicative practices act as
heuristic lenses for reading the complexities of nature and relating them to existing
social practices, thereby extending to lay publics a sense of agency. Such agency,
however, is challenged by a twin distortion of how the nature of genes and genetics is
perceived and understood: genetic determinism and underdeterminism.
The Problem of Genetic Determinism
The legitimate introduction of DTC genetic biotechnology into the lives of
individuals, families, and publics requires heuristics that can communicate to these
audiences an understanding of the complex scientific and mathematical relationships
between genetic mutations and genetic diseases, as well as an equally complex matrix
46.
See e.g., Farrell, Norms of Rhetorical Culture.
27
of biological and social relations linked through genetic ties.
47
Communication thus can
empower individuals, families, and publics with the agency to make choices: as
Luhmann asserts, the complexity of the environment necessitates social actors to make
choices.
48
Crafting such a heuristic can be complex because it competes with frequent
symbolic distortions of how the complexity of genes should be understood and of where
the power to make choices resides. As the dissertation moves into its main chapters, the
challenge of how to address these distortions will emerge as the root cause for the clash
between various institutional languages involved in DTC genetics.
Genes commonly are framed in a lens that distorts their underlying scientific
reality through amplification, exaggeration, and hyperbole. Nowhere is this more
prevalent and evident as in art and fiction. In 1959, a malfunctioning genetic experiment
unleashes The Killer Shrews on the world. For Spielberg's dinosaurs in Jurassic Park,
genetic technology radically reshapes our understanding of past and present. The Boys
from Brazil pits its protagonists against Hitler clones. X-Men's heroes have genetic
mutations that make them powerful, but marginalized. Star Wars: Attack of the Clones
has genetically cloned and engineered soldiers triumph over their mechanized
counterparts. The latest Spider-Man movies feature not the original radioactive but a
newly genetically altered spider. Gattaca's all-too-perfect world brims with the
47.
Chapter II discusses in more detail the scope of this understanding, as it splits into a
mathematical/probabilistic and social dimension.
48.
Luhmann, Social Systems, 25.
28
demagogic promise of personalized genetics. And in a thinly veiled Frankenstein
reference, the aptly-named Stitch of Lilo & Stitch is a genetic patchwork full of rewards
and risks for its owner.
As David Kirby holds, these fictional representations of genetics may mirror
"the dominance that biotechnology enjoys over physics in the world of science."
49
But
more importantly, they are indicative of how the material reality of genes can become
distorted in its translation into a non-expert public consciousness. These distortions of
the material nature of genes put limits to the effectiveness of communication to
legitimately situate genetics in the context of existing social practice. Distortions of the
material reality of genes fall into two categories: the more common genetic
determinism, and the less common genetic underdeterminism.
49.
As quoted in Dan Vergano and Susan Wloszczyna, "Genetics Take Starring Role on Silver
Screen," USA Today, June 17, 2002, http://www.usatoday.com/news/science/2002-06-18-
genetics-movies.htm (accessed March 14, 2007, archived by WeCite at http:/
/www.webcitation.org/5NLTjvsOf).
29
Genetic determinism. The former (often also referred to as overdeterminism or
biological determinism) is a topic of frequent discussion in genetics.
50
Genetic
determinism derives from a perception of genetics as deeply internal and ontological.
Most nongenetic diseases are perceived as external: they become introduced through
bacterial infections, viruses, and other external influences, and they can then be expelled
50.
See e.g., Francis Collins, "Human Genetics: Where Do We Stand?," Origins 26, no. 28
(1997): 464-68; Celeste M. Condit, Alex Ferguson, Rachel Kassel, Chitra Thadhani, Holly C.
Gooding, and Roxanne Parrott, "An Exploratory Study of the Impact of News Headlines on
Genetic Determinism," Science Communication 22, no. 4 (2001): 379-95; Celeste M. Condit,
Benjamin R. Bates, Ryan Galloway, Sonja Brown Givens, Caroline K. Haynie, John W. Jordan,
Gordon Stables, and Hollis M. West, "Recipes or Blueprints for Our Genes? How Contexts
Selectively Activate the Multiple Meanings of Metaphors," Quarterly Journal of Speech 88, no.
3 (2002): 303-25; Gollust, Hull, and Wilfond, "Limitations of Direct-to-Consumer Advertising
for Clinical Genetic Testing;" Abby Lippman, "Prenatal Genetic Testing and Screening:
Constructing Needs and Reinforcing Inequities," American Journal of Law and Medicine 17,
no. 1-2 (1991): 15-50; Dorothy Nelkin, "Molecular Metaphors: The Gene in Popular
Discourse," Nature Review Genetics 2, no. 7 (2001): 555-59; Bonnie Steinbock, "Our
Deterministic DNA: Another Media Myth," Hastings Center Report, 2006, http:/
/www.bioethicsforum.org/20060627bsteinbock.asp (accessed 2006, July 15, archived by
WebCite at http://www.webcitation.org/5XlmpYo6q).
30
through medication or surgery.
51
Non-genetic disease becomes a function of external
intrusion that in turn maintains a sense of the human body as disease-free by default: the
human body only can become corrupted from the outside. Genetic disease functions
opposite: disease is seen as internal to the core of being, encoded into every single cell
at the very foundation of what constitutes the biological self, and spread throughout the
body through the RNAs that shape proteins.
51.
The historical roots for the perception of disease-as-external are rich, but not uncontested.
For many traditions of medicine, both historical and current, disease is perceived as an external
function of demonic creatures, witches, sorcerers, gods, star and moon alignments, and curses.
Ancient Greek and Roman medicine provided a counterpoint, seeing illness as originating from
inside the body: Hippocrates' four "humours" (black bile stood for earth, yellow bile for fire,
phlegm for water, and blood for air) famously required to be balanced in the human body to
ensure good health. These Greek and Roman texts survived into the Middle Ages, where the
view of disease as originating inside the body led to emphases on good hygiene and eating
habits as part of a good medical practice. This perception changed in the late Middle Ages and
the Renaissance; however, as early as 32 B.C., Marcus Terentius Varro's writings on agriculture
believed disease to originate from small, external creatures. Girolamo Fracastoro's De
Contagione et Contagiosis Morbis in 1546, or Antonie van Leeuwenhoek, whose refinement of
microscopy made it possible to see bacteria, substantiated the shift to seeing the origins of most
diseases as external. However, little was understood about how these external influences cause
disease (it was not until the work of Francsco Redi in the 17th century and Louis Pasteur and
others in the 19th century that a theory of spontaneous generation was disproved). The rise of
the scientific method during the European Renaissance and Enlightenment changed the inward
focus of earlier medicine, as methods like dissection and experiments on dead bodies created a
more thorough understanding of medicine and the sources of disease. In the 19th century, the
work of Ignaz Semmelweis, Louis Pasteur, and others popularized germ theory and firmly
established a view of disease as external. In the 20th century, technological progress, coupled
with a better understanding of human physiology, improved techniques for dissection and
surgery. Between the increasingly widely held recognition of germ theory, the ability to perform
surgery and remove parts of the internal body, and progress in medicine like peniciline and
antibiotics that could kill germs, viruses, and bacteria and so purge the body of externally
inflicted disease, disease came to be seen as external: it was caused by external agents, and
could be healed by removing or killing off the external, disease-causing agent. For further
reference, see Arturo Castiglioni, A History of Medicine (New York: Jason Aronson, 1985);
Bruno Latour, The Pasteurization of France (Cambridge, MA: Harvard University Press, 1993);
Joan Leach, "Healing and the Word: Hippocratic Medicine and Sophistical Rhetoric in Classical
Antiquity" (PhD diss., University of Pittsburgh, 1996); Roderick E. McGrew and Margaret P.
McGrew, Encyclopedia of Medical History (New York: McGraw-Hill, 1985).
31
A genetically determined understanding of genetics problematizes this
understanding of genetic disease because it ignores both the nature of genetic
probability and of environmental influence. Genetic determinism shapes a belief that the
material reality of genes -- specifically, the presence of a genetic mutation -- is linked
strongly and directly to a specific future outcome. This belief in turn conveys a false
sense of strong certainty. From a genetically determined perspective, a positive
diagnosis of susceptibility to a disease but lack of effective treatment options would risk
making the consequences of knowing about gene mutations a difficult burden to have to
bear: genetic evidence for heightened susceptibility becomes linked immutably and
inevitably to the eventual onset of the disease itself. This is problematic insofar as a
genetically determined perspective restricts the possibility of choice: positive results are
met with resignation and the belief that nothing can be done to prevent the onset or
manage the genetic "disease." Negative results lead to the equally problematic belief of
being resistant or immune to the disease for which one was sequenced. The distorted
perception of genes ignores the distinction between the presence of a disease and
genetically susceptibility to a disease. It misconstrues the reality that genetic
predisposition works in tandem with environmental influences: smoking, diet, exercise,
and other environmental factors frequently contribute to or trigger an illness to which
one is genetically predisposed.
The omission of environmental factors from a genetically determined
perspective is problematic because it negates human agency. If diet and exercise, or
32
elective surgery, can lower the chance for colon cancer for example, then a positive
genetic test for susceptibility to colon cancer becomes less threatening: it leaves the test
taker with some agency to make choices that could prevent the eventual onset of the
disease. A genetically determined perspective, on the other hand, shapes an
understanding of genes that overdetermines the eventual onset of the disease: with gene
therapy still in a distant and contingent future, the presence of genetic mutations
permanent and immutably leads to the eventual presence of the disease. A positive
genetic colon cancer test thus would falsely signal the inevitable presence of colon
cancer. A deterministic perspective can have a similar effect on negative test outcomes.
Knowledge of the precise nucleotide pairs that create susceptibility to a disease can
instill a false sense of certainty -- however biologically problematic that may be, seeing
that the mutation often exists in every cell of the body -- about the possibility of
"fixing" that mutation.
These examples are at the extreme theoretical ends of how genetic determinism
can skew an understanding of genes. In reality, these perspectives are more tempered.
Celeste Condit's The Meanings of the Gene shows how the idea that genes determine
and pre-determine us has taken hold of popular consciousness since the early days of
genetics.
52
But Condit also shows how, toward the end of the 20th century, genetic
determinism has softened ever so slightly, and the interplay between genes and
52.
Celeste M. Condit, The Meanings of the Gene: Public Debates About Human Heredity
(Madison: University of Wisconsin Press, 1999); Condit et al, "Exploratory Study of the Impact
of News Headlines on Genetic Determinism."
33
environment has received increased attention. This shift manifests itself in the way we
perceive genetics to be of use to us: where in the early decades of genetics topics like
eugenics and genetic engineering dominated public discourse, topics moved toward a
holistic integration of genetics into existing biomedical and environmental models of
health.
53
Thus, few today believe a Gattaca-like world of genetics to be imminent.
Nonetheless, active institutional attempts to educate publics about the deterministically
skewed perceptions of genetics
54
are indicative of the fact that strongly deterministic
beliefs about genetics remain lodged in popular consciousness and affect the way in
which individuals read and understand the nature of genes. Taken to its theoretical
extreme, however, corrective efforts at countering genetic determinism can lead to the
dialectical counterpart of genetic determinism: genetic underdeterminism.
Genetic underdeterminism. Genetic underdeterminism creates a false belief
where a future outcome is always speculative and never seen as sufficiently grounded
and ground-able in the material reality and presence of genetic mutations. From an
underdetermined perspective, the epistemological link between physically present
mutations and predicted future outcomes remains always and necessarily uncertain. A
positive test result would be met with denial or lack of concern either because the
53.
Ibid. See also Celeste M. Condit, "How the Public Understands Genetics: Non-
Deterministic and Non-Discriminatory Interpretations of the 'Blueprint' Metaphor," Public
Understanding of Science 8, no. 3 (1999): 169-80.
54.
See e.g. the Human Genome Project's websites at http://www.genome.gov for the NHGRI's
pages, and http://genomics.energy.gov.
34
disease has not yet manifested itself, because there seems to be no conclusive evidence
that the disease will ever manifest itself, or because having identified the precise gene
that creates a predisposition to that disease seemingly may allow for a correction of that
gene that could prevent disease in the future.
Underdeterminism remains less researched as a particular aspect of how public
perceptions about genetics are shaped than instances of genetic determinism. Instead,
the concept of underdeterminism can be found in more general philosophies of science.
The idea of underdeterminism in science often is linked to the rise of scientific
relativism during the 20th century. Thomas Kuhn's The Structure of Scientific
Revolutions, while not underdeterministic in a strong sense, serves as a cornerstone for
arguments that deny the absolute necessity of a given conclusion based on the presence
of seemingly convincing physical and scientific evidence.
55
Kuhn was not the first to
engage the problem of underdeterminism. David Hume, in his An Inquiry Concerning
Human Understanding, questioned the possibility of certainty in science because of its
reliance on inductive reasoning. Hume's "Problem of Induction" argued that since
scientific reasoning is inductive reasoning, and inductive reasoning builds on
observations of the past, the past can be generalized to predict the future, but that
connection cannot find grounding in strict logic. Inductive reasoning so could operate
55.
Thomas S. Kuhn, The Structure of Scientific Revolutions (Chicago: University of Chicago
Press, 1962).
35
with near-certainty, but skepticism toward claims of certainty remains necessary.
56

Others, from René Descartes to John Meynard Keynes to Betrand Russell, have
discussed the same problem in different ways.
57
Genetic determinism and
underdeterminism thus differ, both in terms of what they are and in their prevalence.
But they share one central concept: their effect on agency.
The problem of agency. Genetic determinism and underdeterminism differ in
how they distort the material reality of genes but are alike in how they constrain the
space for agency and choice. Genetic determinism distorts genetic matter to an extent
that genes come to be perceived as exclusively ontological in nature. Genes are
symbolically framed as a predetermining foundation of everything that constitutes the
self, and they convey a sense of biological predestination. Through a lens of genetic
determinism, genes become imbued with a Dawkins-like agency
58
that strips agency and
choice from the individual. From an underdetermined perspective, the physical presence
of genetic mutations remains always and radically contingent, it lacks any predictive
capacity, and it structures a rejectionist frame
59
that renders choice and decision-making
56.
David Hume, An Enquiry Concerning Human Understanding (New York: Oxford
University Press, 1999).
57.
See e.g., Norma B. Goethe, "Two Ways of Thinking About Induction," in Induction,
Algorithmic Learning Theory, and Philosophy, ed. Michèle Friend, Norma B. Goethe, and
Valentina S. Harizanov (New York: Springer, 2007); John Maynard Keynes, A Treatise on
Probability (New York: AMS Press, 1979); Sandy L. Zabell, Symmetry and Its Discontents:
Essays on the History of Inductive Probability (New York: Cambridge University Press, 2005).
58.
Richard Dawkins, The Selfish Gene (Oxford: Oxford University Press, 1989).
59.
cf. Kenneth Burke, Attitudes Toward History (New York: The New Republic, 1937/1984).
36
moot because decisions over potentially difficult treatments or strict lifestyle changes
seemingly can be postponed: the contingent future of genetic technology allows either
for the belief that genetic or molecular drug treatments will become available, or that
the mere likelihood of having a disease does not warrant interventionist measures.
Thus, overcoming perceptions of genes as determining or underdetermining
humans requires a restoration of agency. Chapters II and III will show that the
conventional communicative practices employed to create an understanding of genes
frequently disassociate the material presence of a genetic mutation from the eventual
onset of a disease. But it is in this attempt to restore agency and to overcome the false
belief that humans are either determined or underdetermined by genes that institutional
languages differ. How communicative practices frame genetic complexity in relation to
existing social practices, and the different ways in which institutions try to best address
genetic complexity, are the central questions for Chapters II and III. Not all DTC
genetic services are alike, however, and to provide a frame for organizing the coming
chapters, the next section provides a typology of the categories for genetic services
analyzed in this dissertation.
Methodology & Typology of DTC Genetic Services
To discuss how the discrete institutional sites involved in the field of DTC
genetics create heuristics that relate complex genetic science to lay practice, the
dissertation divides the practice of DTC genetics into different types of genetic services.
37
DTC genetic services exist in numerous permutations, including services related to
individual health (e.g., identification of genes linked to specific diseases, or risk-
assessment for a disease), services with a focus on social lineage (e.g., paternity testing,
or ancestry tracking), and services that are more difficult to classify (e.g., nutrigenetics
or pharmacogenetics). Studies have divided this growing field using different criteria.
60

Following their lead, the dissertation divides the field of DTC genetic services into three
distinct types. The division outlined here serves to orient the different types of DTC
genetic services currently available on the market; a more thorough description of these
services can be found in Chapters II and III.
Health-Related DTC Genetics
The first type includes health-related DTC genetic services. These services deal
with the management of medical risk and preventative health practice. The genetic
services of this type provide the individual person with information that can indicate
susceptibility to specific diseases (e.g., colon cancer) or (more rarely) the certainty of
eventually having (or not having) a specific disease (e.g., Huntington's, cystic fibrosis).
If positive, results from these services can lead to significant changes in a client's life:
clients may use the genetic information to begin seeking preventative treatment, change
diets, exercise, take medication, or even undergo surgery. They also can empower the
patient: health information can change how patients approach their doctors, and what
60.
Gollust, Wilfond, and Hull, "Direct-to-Consumer Sales of Genetic Services on the Internet."
38
expectations and assumptions they carry into a consultation or meeting with their
primary care physician. Cancer risk-assessment services, for example, can screen for a
variety of cancers and allow the client to seek medical treatment (e.g., chemotherapy) or
change their lifestyle (e.g., diet habits, smoking, exercising) long before symptoms of
cancer manifest. Tests for hemochromatosis allow the client to detect iron irregularities
and respond to prevent diabetes, liver cancer, heart problems, and other ailments.
Services that detect markers for cystic fibrosis can point to necessary preventative steps
to protect lungs, sweat glands, the digestive system, and other affected areas and
calculate the chances of passing on the disease. Tests for alpha-1 antitrypsin deficiency
enable detection of a lesser known, but relatively widespread disorder that can affect the
lung (and cause asthma) and the liver.
Non-Health DTC Genetics
Not all DTC genetic services are health-related. The second type of DTC genetic
test consists of non-health genetic services. The "non-health" tag should not suggest that
these services are unimportant or superfluous. These tests emphasize the social
dimension of genetics, even though they are not limited to it. They include popular
ancestry tracking tests, paternity testing (or other relational tests), and tests that can be
used to make claims for rights to immigration privileges and claims. Non-health tests
often are bound up with issues of identity: clients can gain a new or changed
understanding of who they are, and they can change or reaffirm their familial identity or
39
ancestral heritage. These tests, too, can be empowering to individuals who make use of
them. They can reaffirm long-held beliefs about familial identity or heritage, they can
provide assurance about biological relationships to others, or they can be used to prove
legal rights that are tied to a specific cultural or geographical heritage. Chapter IV will
show, however, that these tests come with potential risks as well.
Hybrid DTC Genetics
A third type includes services that vacillate between the two previous types.
These hybrid services are situation-dependent, and can be used for health-related or
nonmedical purposes. They include custom-tailored diet recommendations (also known
as nutrigenetics or nutrigenomics) and a newly emerging service in the pharmaceutical
field called pharmacogenetics. The former purportedly provides diet recommendations
based on the genetic makeup of the client's DNA, where screening seeks a set of
conditions that can be addressed by properly adjusting one's diet. This service can be
used to customize one's diet and to adjust diets to prevent medical complications from
both latent or actual obesity or undernourishment. Pharmacogenetics uses the client's
DNA to determine the person's rate of drug metabolism. This information in turn allows
clients and their doctors to adjust drug dosage and better manage side effects.
The three types of DTC genetics consist of a wide range of applications and
services, some more popular than others. The services currently offered in the third type
either are proven not to work (nutrigenetics) or are in a very early stage of development
40
(pharmacogenetics); thus, they are not (yet) used as frequently as the others. For the
purposes of this study, I will thus focus on the first two types and omit the hybrid type.
Chapter V, however, speculates about the impact these types of tests will have on a
future practice of DTC genetics.
Representative Tests for Health and Non-Health Services
For this study, I selected one widely used genetic service from each of the first
two types: hemochromatosis risk-assessment from the health-related type, and ancestry
tracking from the non-health type.
61
Each of these applications represents a major and
oft-utilized service in their respective categories. Hemochromatosis tests are popular
because of the relative high prevalence of hemochromatosis in the general public,
because positive results come with a complex but available set of choices regarding risk
and treatment options, and because of the relatively low cognitive threshold (e.g., as
opposed to cancer risk-assessment or Huntington's disease) required to order such a test.
Ancestry tracking is a widely popular subtype of DTC genetic services, ranging from
major transnational projects like IMB/National Geographic's Genographic Project to
small business ventures that provide customers with ancestral information about
themselves and their families. While each of these services contains a microcosm of
unique challenges, problems, assumptions, and practices of use, their characteristics are
typical of those of other tests within their respective categories. The study explores the
61.
See Chapter II for additional detail on each of these services.
41
texts that accompany these specific tests as examples of the communicative conventions
used to communicate the mathematical and social complexities of health and non-health
types of DTC genetic services.
The practice of DTC genetics takes place almost exclusively through written
discourse. Communicative interactions between businesses and clients all take place in
writing:
62
because DTC genetics favors anonymity and ease of use, the temporal and
spatial distance that it can provide makes writing the medium of choice.
63
Nonmarket
institutions insert themselves into the practice through textual artifacts: legislation,
medicine, and public advocacy all leave formal discursive traces of their involvement in
DTC genetics through bills, hearings, acts, statement briefs, and newsletters. At the core
of Chapters II and III is a rhetorical analysis of how the websites, legal forms, and test
result reports that constitute the market's language, and legislative documents and
recommendations, statements by medical organizations, and issue briefs by public
advocacy groups that constitute the nonmarket actors' language, together form a
language -- a vocabulary and grammar -- that acts as a heuristic for communicating and
making sense of the complexities associated with DTC genetic technologies. Chapter IV
assembles these institutional languages and, through the lens of a framework by
62.
For a more detailed view of the communicative steps involved in a DTC genetics practice,
see section on "The Communicative Steps of a DTC Genetics Practice" in Chapter II.
63.
cf. Walter J. Ong, Orality and Literacy: The Technologizing of the Word (London:
Routledge, 1991).
42
sociologists Luc Boltanski and Laurent Thévenot, shows why they clash, and why their
clash magnifies complexity and thereby increases risk.
Thus, the dissertation employs both close textual, rhetorical analysis and
theoretical frameworks from sociology. Indeed, both rhetoric and sociology are
necessary to appreciate the complexity of change as science discovers new ways of
interpreting nature and technology devises new vehicles for introducing such discovery
into the lives of individuals and collectives. Both rhetoric and sociology have a history
of reading and intervening in these processes. The next section illuminates some of this
disciplinary history, arguing that while both rhetoric and sociology have dealt in depth
with the problem of bridging the divide between nature and the social, what is lacking is
a focus on how language frames agency as constitutive of the way in which individuals
engage in biotechnological practice, and as problematic when rhetorically situated loci
of agency clash with each other.
Literature Review: Nature, Society, and the Question of Agency
The literature review opens with a brief historical snapshot that traces (albeit
cursorily) some of the moments where questions about the integration of nature into the
social surfaced. It then moves into the 20th century to discuss sociological work that
theorizes how actors in social spaces integrate objects of nature and their corresponding
technologies into social practices. Much of this integration relates to symbolic
mediation: how nature and its elements are framed symbolically and integrated into the
43
existing symbolic interactions of social actors. Communication, and in particular
rhetoric, have theorized the mediation of environmental objects in their integration into
social practices. Throughout these sections, the question of agency looms large: what
constitutes agency, where agency is located, and how it becomes situated. Ultimately,
this section argues that while existing work in sociology and rhetoric yields necessary
theoretical and methodological insights, this dissertation extends a focus on rhetorically
situated agency and on the stases that emerge from competing definitions of agency as
an underlying rhetorical principle to biotechnological practice. Such recognition of
agency in particular and of a rhetorical understanding of language in general, the
dissertation argues, is necessary for the establishment of state-of-the-art norms of
communication for biotechnological practice.
Historical Snapshot
The problem of integrating nature into the social may be as old as the existence
of a stable social space itself. While it predates the ancient Greeks, in Western thought
some of the best known considerations of this problem can be found in the writings of
the Greeks. Plato, for example, broke with the tradition of using the streets of Athens as
a backdrop for his writings when he situated the Phaedrus in the countryside outside the
city. That the Phaedrus' natural setting framed questions of rhetoric and writing (albeit
44
often metaphorically), and more implicitly questions of agency,
64
is indicative of the
concerns about the nature of agency that later would provide a common thread to the
field of rhetoric. Where Plato's mingling of (and concern with) nature and the social in
the Phaedrus was implicit at best, Aristotle discussed the problem of integrating nature
into the social more explicitly. The Nicomachean Ethics and its discussion of tyche
(maybe best translated as "moral luck") show Aristotle's belief that as the social space
bumps into nature, notions of agency and teleology in relation to either nature or the
social become questioned and complicated.
65

Long after Plato and Aristotle, Niccolò Machiavelli picked up on Aristotle's
notion of tyche in his discussion of fortuna.
66
And even though Machiavelli did not
connect fortuna explicitly to nature per se, if he is read as a transitional thinker between
the ideas of of the ancients and an incumbent age of modernity,
67
it is difficult not to see
64.
See e.g., Judith Ann Abrams, "Plato's Rhetoric as Rendered by the Pentad," Rhetoric
Society Quarterly 11, no. 1 (1981): 24-28; James L. Kastely, "Respecting the Rupture: Not
Solving the Problem of Unity in Plato's Phaedrus," Philosophy & Rhetoric 35, no. 2 (2002):
143.
65.
Aristotle, The Nicomachean Ethics, trans. J. A. K. Thomson and Hugh Tredennick (London:
Penguin Books, 2004). See also Martha Craven Nussbaum, The Fragility of Goodness: Luck
and Ethics in Greek Tragedy and Philosophy (Cambridge: Cambridge University Press, 2001);
Miguel E. Vatter, Between Form and Event: Machiavelli's Theory of Political Freedom
(Boston: Kluwer Academic Publishers, 2000), 151.
66.
Niccolò Machiavelli, The Prince, trans. Robert Martin Adams (New York: Norton, 1992);
Niccolò Machiavelli, Discourses on Livy, trans. Harvey C. Mansfield and Nathan Tarcov
(Chicago: University of Chicago Press, 1996). See also Vatter, Between Form and Event.
67.
See e.g., Harvey C. Mansfield, Machiavelli's Virtue (Chicago: University of Chicago Press,
1996).
45
how fortuna gives credence both to the ideas of the past and the rediscovery of nature in
philosophy that soon would follow. After Machiavelli, the concept of nature gained in
importance. Born shortly after Machiavelli's death, Francis Bacon's famous quotation
that "nature, to be commanded, must be obeyed" signaled a departure from
Machiavelli's antagonistic conception of the external toward a view where the external
could be made known. The more enthusiastic view of an external and its potential to be
integrated into the social space persisted throughout the Age of Reason and the
Enlightenment. It was slowed down significantly in the Romantic period, where the
period's most recognizable literary icon exemplified the risks and dangers of what can
happen when nature is "commanded" and managed: even to date, Mary Shelley's
Frankenstein still sets the tone for the risk of tinkering with the biological essence of
what makes us human.
The beginning of the 20th century gave credence to the Romantic period's
pessimism about the unrelenting drive to make nature part of the social. The scientific
insights and technological advancements of the late 19th and early 20th century gave
World War I the dubious distinction of leading to the most military casualties of any
war up to that date. Just over a decade later, the casualties of World War I were eclipsed
by the events that took place during World War II. Combined, the two wars led to
proclamations about the demise of Enlightenment ideals that favored the possibility of
progress through managing nature and rationality. Hannah Arendt and others lamented
the eclipse of a vita activa in which political praxis trumps philosophical views of
46
humans as Plato's shadows subordinated to something other than themselves.
68
Among
them, Kenneth Burke began to write about his distaste of "scientism." Burke saw
scientism as a lens that would impose an absolute way of seeing and interacting with the
world, likening it both to magic and religion. All three, he argued, imposed an
authoritative hermeneutic on humans: science, like magic and religion, are modes of
reading and making sense of unexpected external phenomena that could not be
explained within the epistemological framework of a given culture and society. They
were necessary insofar as there was a basic human need to explain and make sense of
inexplicable phenomena. But to Burke, the danger in each of these "modes of
rationalization" was their insistence on being the only, sole, and authoritative lens that
could explain and make sense of the external. Burke's response was a new hermeneutic
that was poetic in nature: a poetic mode of rationalization that, unlike science, magic, or
religion, would allow for seeing the world more flexibly and openly.
69
Theorizing and Defending the Contested Mediation Between Nature and Social
The sociological tradition. Burke's analogy between scientism, magic, and
religion is important because it points to the hermeneutic function of each. Rather than
68.
See e.g., Hannah Arendt, The Human Condition (Chicago: University of Chicago Press,
1998).
69.
Kenneth Burke, Permanence and Change: An Anatomy of Purpose (Berkeley and Los
Angeles: University of California Press, 1935/1984). This concept of Burke's reappears in
Chapter II as a strategy of framing and translating genetics.
47
absolute and authoritative modes of reasoning and of seeing nature, Burke's analogy
emphasizes that each is one among many modes of rationalizing the natural world.
Modes of rationalization thus each may seemingly be absolute and unique but in reality
are not. The view of science as a hermeneutic for making sense of nature brings up
questions about the symbolic mediation of nature. These questions are not unique to
Burke. Thomas Kuhn's The Structure of Scientific Revolutions
70
argued that scientific
invention and progress did not follow the inevitable, teleological path its history would
suggest. Instead, social, historical, and individual factors at any given time enabled and
constrained scientific discoveries and inventions. Kuhn thus suggested what Aristotle
and others had insinuated in more general terms: that neither the social nor nature could
act independently of the other, and that any integration of elements from one into the
other would fundamentally shape, change, and be changed by the other.
Kuhn's work helped give rise to a rich body of literature in emerging fields and
subfields like the history and philosophy of science, science and technology studies, and
the sociology of science/scientific knowledge. The Structure of Scientific Revolutions
soon was caught in the middle of a debate that would rage for decades between the
Vienna Circle's logical positivists, who thought that Kuhn too radically relativized
science, and postmodernists and poststructuralists, who believed he was not radical
enough. The debate soon splintered into ever finer gradations, where internal
70.
Kuhn, Structure of Scientific Revolutions. See also Kenneth Zagacki and William Keith,
"Rhetoric, Topoi, and Scientific Revolutions," Philosophy & Rhetoric 25, no. 1 (1992): 59-77
48
separations on either side led to deeper and deeper debates about the nature of science
and society. These internal separations included adherents of a "Strong Programme,"
most famously David Bloor, proponents of a "Weak Programme," and others like Karl
Popper, Imre Lakatos, Paul Feyerabend, Wiebe Bijker, and Bruno Latour.
71
Despite internal disagreements, proponents of these schools had in common a
purpose to show that Science (capital S) was not a unified whole but instead was
composed of sciences (small s). Unlike Science, the sciences could differ strongly in
their ontological presumptions and in the epistemological tools they used to reveal the
complexities of nature. Thus, sciences all were shaped and influenced internally and
externally by varying forms of nonpositivist social forces.
Because of their open challenge to the Vienna Circle's thesis of scientific unity,
these schools had to defend themselves against accusations of relativity. Sociologists
and philosophers of science, some argued, sought to deny the objective empiricism of
science in favor of a social constructionist point of view. Most famously, the Sokal
Hoax tried to expose the problem of approaching science through nonscientific and
relativistic means. In 1996, Sokal revealed in Lingua Franca that the scientific
foundation of an article
72
he published in the well-known peer reviewed journal Social
71.
For an overview, see Massimiano Bucchi, Science in Society: An Introduction to Social
Studies of Science, trans. Adrian Belton (London: Routledge, 2002).
72.
Alan Sokal, "Transgressing the Boundaries: Toward a Transformative Hermeneutics of
Quantum Gravity," Social Text 14, no. 1/2 (1996): 217-52. See also Alan Sokal, "A Physicist
Experiments with Cultural Studies," Lingua Franca (May/June 1996): 62-64.
49
Text lacked the veracity on which it claimed to build its critique of subjectivist views of
science. Through his article, and later in a book (co-authored with Jean Bricmont)
entitled Fashionable Nonsense, Sokal sought to critique the Strong Programme,
postmodernists, and psychoanalysts for using science to create a veneer of respect for
their own work, and for misusing scientific concepts (either in critique or application)
that they did not understand. Responses to Sokal and Bricmont in turn accused them of
ignorance and pointed at their conflation of postmodernism and poststructuralism.
Science studies, many argued, were not trying to impose a framework of radical
relativism on science, but instead discussed the problematic blind belief in objectivity
and the false dichotomy it set up between science and society.
The debates between the various schools of thought involved in these questions
are too numerous to recount in detail here. What they had in common was a notion that
the integration of nature -- of elements or objects from nature and the environment --
into social spaces and practices somehow was and had to be mediated. The nature of
this mediation frequently became subsumed under general terms like social, cultural, or
political. Among these labels, some considered the concept of a symbolic or
communicative mediation of nature and how communication and language could shape
the integration of scientific objects into the social space. Karin Knorr Cetina and Bruno
Latour, for example, notably discussed the role of metaphor, argumentative modality,
50
controversy, and rhetoric in the sciences.
73
Such increased awareness of the role that
rhetoric played in the sciences and in how sciences communicate with the public
introduced another academic field to the discussion: speech communication.
The rhetorical tradition. The role rhetoric played in the symbolic mediation of
nature and its integration into the public space did not go unnoticed in the field of
rhetoric and speech communication. For rhetoricians, however, a driving force behind
their efforts to theorize the symbolic mediation of nature was less to participate in the
debates over scientific relativity and social influences on science than to equip
individuals with the skills they needed to participate as citizens in political practices.
They recognized that in order to train "good citizens," an understanding of science -- of
how fields of science communicate with the public, and how scientific discourse is
discussed in public spaces -- increasingly was becoming paramount. Early in the 20th
century, John Dewey made a case for scientific education as a "supreme intellectual
obligation" of educators.
74
Later, Burke's influence on the field of rhetoric in the 60s and
70s was a likely catalyst to recognizing the importance of understanding the language of
science and how it could affect public, social practices. Others extended the concern
73.
Karin Knorr Cetina, Epistemic Cultures: How the Sciences Make Knowledge (Cambridge,
MA: Harvard University Press, 1999); Bruno Latour and Steve Woolgar, Laboratory Life
(Princeton, NJ: Princeton University Press, 1986); Latour, Politics of Nature.
74.
John Dewey, "The Supreme Intellectual Obligation," Science Education 18, no 1 (1934):
1-4.
51
with training lay publics in the language of science
75
to emphasize that a public
understanding of science is important not only for democratic and civic reasons but also
for scientists who depend on resources in a variety of forms from the public. Texas'
failed supercollider may be one of the more memorable pieces of evidence for the
bilateral relationship between science and public.
76
The very concept of communicating science to publics itself is problematic,
however. The integration of a symbolically mediated language of science into public
practices is rhetorically challenging, complex, and problematic. As early as 1959, Lloyd
Bitzer questioned the feasibility of targeting science communication as rhetorical
discourse toward larger audiences. He argued in "The Rhetorical Situation" that "neither
scientific nor poetic discourse requires an audience [as] the scientist can produce a
discourse [...] without engaging another mind."
77
Bitzer acknowledged that scientific
discourse does address certain audiences. But if a rhetorical audience is one that "must
be capable of serving as mediator" of change, he posited that those "audiences are not
necessarily rhetorical" because they instead "consist of persons capable of receiving
knowledge."
78
75.
For a thorough history of this field and of science in public in general, see Gregory and
Miller, Science in Public.
76.
David Ritson, "Demise of the Texas Supercollider," Nature 366, no. 6456 (1993): 607.
77.
Lloyd F. Bitzer, "The Rhetorical Situation," Philosophy and Rhetoric 1, no. 1 (1959): 8.
78.
Ibid.
52
Bitzer was not alone in emphasizing the difficulty of conceptualizing a rhetorical
lay audience receptive to the language of science. The difficulty lies in the clash
between a language of science that is highly complex and a public that is not trained in
understanding scientific complexity. The clash between these languages can lead to
controversy over considering or making use of elements of nature conveyed through
science in the public square.
79
In "The Rhetoric of Science," Philip Wander observed:
"When the language of public debate becomes too specialized, the laity is encouraged to
remain silent."
80
He argued that the rise of expert committees in society leads to
decreased decision-making powers by larger publics; a trend that is especially
pernicious considering the importance of scientific language in all realms of public
discourse and policy-making. Wander, however, rejected the "perplexing duality
between informative (scientific) and persuasive (rhetorical) discourse"
81
that Bitzer's
distinction between rhetorical and scientific audiences emphasized. Wander argued
instead that scientific discourse, both within scientist circles and between scientists and
the public, was always rhetorical and thus subject to rhetorical inquiry.
79.
See e.g., H. Tristram Engelhardt and Arthur L. Caplan, eds., Scientific Controversies: Case
Studies in the Resolution and Closure of Disputes in Science and Technology (Cambridge:
Cambridge University Press, 1987); Latour, Politics of Nature; Dorothy Nelkin, Controversy:
Politics of Technical Decisions (Newbury Park, CA: Sage, 1992).
80.
Philip C. Wander, "The Rhetoric of Science," Western Speech Communication 40, no. 4
(1976): 227.
81.
Ibid., 233.
53
Others questioned the separation between scientific and rhetorical audiences as
well and brought critical attention to the risks of maintaining such a separation. G.
Thomas Goodnight critiqued the existing separation between technical and public
modes of invention that increasingly stifled public argument. He argued for the
reinvention or rediscovery of "the lost art" of deliberative public argument.
82
Similarly,
Walter Fisher's analysis of public moral argument in environmental discourse cautioned
that within a framework of scientific reasoning and rational validity standards, "public
moral argument is [...] overwhelmed by privileged argument." Fisher's was concerned
with "what happens when 'experts' argue about moral issues in public," and with how
technical reason "rendered the public unreasonable." He concluded that in such
situations true public moral argument becomes impossible and only can be
reinvigorated when experts assume roles as "counselors" that impart and teach as
storytellers rather than pronounce "a story that ends all storytelling."
83
What this short selection of studies illuminates is a central problem for the
integration of a symbolically mediated nature into the social: the assumption of one-
sided authority on grounds of expertise.
84
The concern with one-sided authority reminds
of Burke's critique of scientism as a seemingly authoritative mode of rationalization.
82.
Goodnight, "Personal, Technical, and Public Spheres of Argument."
83.
Walter Fisher, "Narration as a Human Communication Paradigm: The Case of Public Moral
Argument," Communication Monographs 51, no. 1 (1984): 12-15.
84.
see e.g., Thomas Haskell, The Authority of Experts: Studies in History and Theory
(Bloomington: Indiana University Press, 1984).
54
Scientific expertise can and often is if not rhetorically constructed then at least
rhetorically amplified. Explicating the voice of expertise, Thomas Lessl argued that
science uses a "priestly" voice that is "in some sense extra-human, always originates
within a certain elite substratum of society and represents a reality that the audience can
only superficially hope to approach."
85
Critiquing the presumption of expertise in
science, Steve Fuller saw scientific expertise embedded in myth
86
or ethos
87
that limited
or barred nonexpert participation in science. And Charles Taylor argued that science's
successful demarcation of technical expertise comes "at the cost of public authority."
88

Overcoming the separation between science and public thus proves to be a formidable
hurdle, but a hurdle that the institutions involved in DTC genetics need to clear: if
market and nonmarket actors alike indeed seek to facilitate and make possible the
participation of individuals and groups in a biotechnological practice like DTC genetics,
then crafting communicative practices that can convey complex science and give
individuals and groups the legitimate power to make choices and evaluate actions about
their use of science becomes necessary.
85.
Thomas L. Lessl, "The Priestly Voice," Quarterly Journal of Speech 75, no. 2 (1989): 183.
86.
Steve Fuller, "Social Epistemology and the Research Agenda of Science Studies," in
Science as Practice and Culture, ed. Andrew Pickering (Chicago: University of Chicago Press,
1992), 422.
87.
Ibid., 394.
88.
Charles A. Taylor, "Of Audience, Expertise and Authority: The Evolving Creationism
Debate," Quarterly Journal of Speech 78, no. 3 (1992): 289.
55
Rhetoric and argumentation can serve as means for overcoming the separation
between science and publics. The perplexity and controversy that arises whenever new
elements of nature are introduced into public practices
89
can be transformed into a
critical site of inquiry that, as Goodnight argued, "strengthens the quality of
argumentation and decision-making."
90
Fisher proposed to shift to narratives paradigms
of communication as a mode of better translating complex science into lay practice.
91

Gregory and Miller cautioned against a one-sided model of communication
92
and called
for a communication network model that "allows popularization to be considered not as
something peripheral to scientific activity, or as deviant or pathological, but as an
integral function of normal scientific life."
93
Extending Kuhn's Structure of Scietnific
Revolutions to rhetoric, Kenneth Zagacki and William Keith proposed that rhetorical
practices accompany scientific revolutions to frame uncertainty, create personae,
preserve new ideas, and settle changes brought about by new scientific insight into
preexisting practice.
94
And regarding genetics, Celeste Condit et al. explored how public
89.
Latour, Politics of Nature. On how new technologies can force social groups to re-draw
boundaries of normalcy, see also Douglas and Wildavsky, Risk and Culture, 35.
90.
G. Thomas Goodnight, "Controversy," in Argument in Controversy: Proceedings of the
Seventh SCA/AFA Conference on Argumentation, ed. Donn W. Parson (Annandale, VA: Speech
Communication Association, 1991), 8.
91.
Fisher, "Narration as a Human Communication Paradigm."
92.
Gregory and Miller, Science in Public, 86.
93.
Ibid, 88.
94.
Zagacki and Keith, "Rhetoric, Topoi, and Scientific Revolutions."
56
perception of scientific concepts could be altered. They deployed the metaphor as a
tropological means of reducing the deterministic nature with which many associate
genetics. The failure of using recipe instead of blueprint as the dominant metaphor for
genetics led them to extend the concept of metaphor to a "polyvocal theory" where
"metaphors develop particular patterns of social usage."
95
The practice of rhetoric thus can mediate the introduction of new scientific
discoveries into social practice by moving from evolving conditions of change to settled
norms of social practice. In genetics, the symbolic mediation of nature revolves around
the question of agency. Because genetic complexity, coupled with misunderstandings
about the nature of genes, removes agency and disrupts settled norms of social practice,
communicative practices that relate genetic complexity to social practice restore a sense
of agency to clients and publics. Later, the dissertation will show that the
communicative conventions of institutions clash over how to frame agency, leading to
communication complexity that puts at risk the integration of DTC genetics into
existing social practices. The next section explores more general views on agency
relevant to the relation between science and social.
The question of agency. The question of symbolically mediating nature is
important because it is this mediation that relates environmental complexity to social
practice and enables and constrains how individual persons and larger groups can make
95.
Condit et al., "Recipes or Blueprints for Our Genes?," 303. See also Condit, "How the
Public Understands Genetics;" Alan G. Gross, The Rhetoric of Science (Cambridge, MA:
Harvard University Press, 1996).
57
legitimate choices about their use of new biotechnologies. In other words, the symbolic
mediation of nature enables and constrains how affected audiences perceive, judge, and
make use of the benefits and risks of a new object of nature. As Mary Douglas and
Aaron Wildavsky argue, the risks individuals and groups face may be purely empirical,
concerning the mathematical probability of danger that comes from the use of science
and technology. But empirical risks often carry a second, more social, and often more
deliberative dimension that concerns the interpretation of danger. This second
dimension involves questions over whether integrating the element of nature that poses
the empirical risk ("danger") ought to be acceptable.
96
The concept of risk thus not only
speaks to "what the world is like" but also to "how we live."
97
This latter dimension of
risk involves active personal or collective choice. This necessary second dimension of
risk thus presupposes a sense of agency: it gives agency to individuals or groups to
choose whether and how to integrate an element of nature into their practices.
The necessary sense of agency that undergirds Douglas and Wildavsky's second
dimension to risk is tied to moral responsibility: it requires individuals and groups to
"integrate moral judgments about how to live with empirical judgments about what the
96.
Douglas and Wildavsky, Risk and Culture, 10. They hold that
In calculating the probability of danger from technology, one concentrates on the risk
that is physically "out there," in man's intervention in the natural world. In determining
what is acceptable, one concentrates on the uncertainty that is 'in here,' within a person's
mind. Going from "out there" to "in here" requires a connection between the dangers of
technology and people's perception of those risks.
97.
Ibid.
58
world is like," and it holds that "ought cannot be completely deduced from what is."
98
In
a large-scale late modern society,
99
however, the locus of agency is not easily
determinable. In the institutional multiplicity of many contemporary societies, agency is
difficult to locate and situate firmly in the social and discursive processes of integrating
nature into the social.
The centrality of agency resonates with concerns about a symbolic mediation of
nature. As a large field of environmental rhetoric and advocacy attests, human agency in
the practice of transgressing the boundary between nature and social is critical.
100
But
maybe nowhere is a concern with agency as evident as in actor-network theory (ANT).
Latour's Politics of Nature, while not strictly within the paradigm of ANT, is indicative
of how ANT tries to rethink and resituate the notion of agency in the integration of
nature into social spaces.
101
Politics of Nature rethinks how facts of nature are
introduced into the value-centric space of the social, proposing a progression in which a
sense of perplexity yields to consultation about whether new nonhumans should be
allowed to bear onto a collective, then moves into hierarchization that asks how
98.
Ibid., 10, 30.
99.
Ulrich Beck, Risk Society: Towards a New Modernity, trans. Mark Ritter (London: Sage
Publications, 1992); Ulrich Beck, Anthony Giddens, and Scott Lash, Reflexive Modernization:
Politics, Tradition and Aesthetics in the Modern Social Order (Stanford, CA: Stanford
University Press, 1994); Anthony Giddens, "Risk and Responsibility," Modern Law Review 62,
no. 1 (1999): 1-10.
100.
See e.g., Carl George Herndl and Stuart C. Brown, Green Culture: Environmental Rhetoric
in Contemporary America (Madison: University of Wisconsin Press, 1996).
101.
Latour, Politics of Nature. See also Latour, Reassembling the Social.
59
relations between humans and new nonhumans should be established, which gives way
to institutionalization that embeds and settles nonhumans among humans.
Through ANT, Latour articulates a model of how human actors coexist with
what he calls "nonhuman" actors: corporations, technological objects, elements of
nature and the environment, or institutions. ANT argues that like human actors,
nonhuman actors, too, have agency: they can influence, impact, and change other
nonhuman actors and human actors alike. Following assumptions of the "Strong
Programme" in science studies, ANT is built on the assumption of symmetry: it posits
that in critical inquiry, human and nonhuman actors both must be viewed as
symmetrical actors, equally influencing and affecting each other. In its conceptual
assumptions, ANT "challenges some common epistemological convictions by rejecting
essential subject/object, culture/nature, or society/technology distinctions."
102
Michel
Callon and John Law use the example of a ringing telephone to illustrate how a
technological object can be active and necessitate an act of choice.
103
This distribution
of actors to involve nonhumans calls into question the notion of agency.
102.
Bryn Williams-Jones and Janice E. Graham, "Actor-Network Theory: A Tool to Support
Ethical Analysis of Commercial Genetic Testing," New Genetics and Society 22, no. 3 (2003):
272.
103.
Michel Callon and John Law, "Agency and the Hybrid Collectif," South Atlantic Quarterly
94, no. 2 (1995): 481-505.
60
In ANT, interactions between human and nonhuman actors take place through
the translation of individual interests
104
that establish common ground and change the
actors involved.
105
Agency thus is enabled and constrained through the translation of
common interests.
106
It is not situated within specific places; instead, it is situated
through the interactions that take place in a network of human and nonhuman actors.
These interactions are critical to understanding biotechnological practices: as Bryn
Williams-Jones and Janice Graham argue, "genetic technologies are not simply passive
entities developed by scientists, prescribed by clinicians and used by patients. A genetic
test will shape and be shaped by human behaviour, relations, and society."
107
Agency in
ANT thus need not be restricted to human actors, but can shift to nonhumans as well.
Thus, agency in ANT is distributed
108
: the individual human or nonhuman actor exists
104.
Williams-Jones and Graham, "Actor-Network Theory." Broadly, "translation" in ANT is
here defined as a form of "'glue' that encourages [actors in a network] to be involved in a
network."
105.
Michel Callon, "Some Elements of a Sociology of Translation: Domestication of the
Scallops and the Fishermen of St. Brieuc Bay," in Power, Action and Belief: A New Sociology
of Knowledge, ed. John Law (London: Routledge & Keagan Paul, 1986).
106.
Which, as Chapter IV will deal with in more detail, resemble the "principles of worth" in
Luc Boltanski and Laurent Thévenot's work on justification.
107.
Williams-Jones and Graham, "Actor-Network Theory," 284.
108.
See e.g., Hans Harbers, Inside the Politics of Technology: Agency and Normativity in the
Co-Production of Technology and Society (Amsterdam: Amsterdam University Press, 2005);
John Law and John Hassard, Actor Network Theory and After (Malden, MA: Blackwell/
Sociological Review, 1999).
61
as part of a network in which agency is distributed between and shared by a range of
human and nonhuman actors.
ANT's view of agency is problematic for inquiry into a practice where different
institutional perspectives act as singular perspectives from within which they designate
discrete, contending loci of agency. Such loci of agency enable and constrain how
individual and social actors, as autonomous agents, can make choices, evaluate actions,
justify decisions, and translate results. But they are also in external contention, not
distributing agency among themselves but instead fighting over who has the legitimate
power to set boundaries for grounds for choice.
Because ANT distributes agency symmetrically between humans and
nonhumans, from the vantage point of ANT there is no form of human agency that
would allow autonomous actors to make critical choices about the integration of
nonhuman objects that are a priori to and outside of the system that contains these
objects. Responsibility is distributed similarly: as Nick Lee and Steve Brown show,
"one site for the construction of subjects, and simultaneously objects, is the occasions
on which we are held responsible for our actions."
109
An actor-network system resolves
tensions and disagreement internally and leaves no possibility for human agency
situated outside and prior to an actor-network comprised of humans and new
109.
Nick Lee and Steve Brown, "Otherness and the Actor Network: The Undiscovered
Continent," American Behavioral Scientist 37, no. 6 (1994): 773. See also Martin Heidegger,
The Question Concerning Technology and other Essays, trans. William Lovitt (New York:
Harper & Row, 1977).
62
nonhumans. Nor can it situate moral responsibility for actions about but not within a
network of human and nonhuman actors. This is not to say that ANT closes off the
space for agency, choice, and responsibility, only to say that it restricts linguistic agency
to an a posteriori function of interconnected actors within a system. Consequently,
some have pointed out how ANT is by design amoral,
110
and discuss why its totalizing
structure can in its current form leave no room for an external "Other."
111

These contentions are important for a consideration of genetic complexity and
its communicatively mediated relation to social practice. Niklas Luhmann points out
that "complexity, in this sense, means being forced to select; being forced to select
means contingency; and contingency means risk."
112
For Luhmann, risk emerges from
the choices a system must make because it always and necessarily is less complex than
the environment in which it is situated and which, through biotechnological practices or
scientific discovery, it wants to make part of itself.
113
Thus, absent the possibility of a
system that is in perfect balance with its environment (i.e., is equipped to "react to every
state of the environment"
114
), systems must and always will expose themselves to the
110.
See e.g., Geoffrey C. Bowker and Susan Leigh Star, Sorting Things Out: Classification and
its Consequences (Cambridge, MA: MIT Press, 1999); Langdon Winner, "Upon Opening the
Black Box and Finding it Emtpy: Social Constructivism and the Philosophy of Technology,"
Science, Technology, & Human Values 18, no. 3 (1993): 362-78.
111.
Lee and Brown, "Otherness and the Actor Network."
112.
Luhmann, Social Systems, 25.
113.
Ibid.
114.
Ibid.
63
potential risks that come with having to make selective choices. In so doing, they
expand the domain of contingency, uncertainty, and risk. And choose they must,
because every system "contains, as complexity, a surplus of possibilities, which it self-
selectively reduces."
115
As each choice (each selection of objects of the environment for
integration into the social system) settles new norms that combine, reduce, and calcify a
surplus of possibilities that exists in the system's environment, the act of choice and
selection itself brings with it contingent uncertainty that, by definition, involves risk.
The introduction of new biotechnologies like DTC genetics creates new
uncertainties and challenges to settled norms. As new biotechnologies impinge on social
systems, they increase complexity and call forth precisely the kinds of contingent
choices Luhmann discusses. But for Luhmann, like for ANT, there is little agency for
autonomous actors -- be they individuals or publics -- for choice: instead, it is the
unstable discrepancy between the existing complexities of a social system (which are
settled into known relations and guides for navigating them) and newly discovered
elements of the environment (which disrupt and destabilize the known, settled norms of
the social system) that, as he says, "forces" us to make choices. As is true for ANT,
Luhmann theorizes agency, but not in a way that recognizes how agency is not as much
an effect of a preexisting system or network as it is a normative ground from which
choices about the integration of new biotechnologies into preexisting social practices
can be justified and legitimized. And this recognition, the dissertation argues, is critical
115.
Ibid., 39.
64
to inquiry into DTC genetics because it recognizes that the language through which
multiple, polysemous institutional sites frame agency not only matters, but that clashes
between how different languages situate different loci of agency magnify complexity
and create risks for participants in DTC genetic services.
Neither Luhmann nor ANT thus theorize how different loci of agency affect the
legitimacy of choices, actions, and outcomes differently. Even if the absence of
external, moral agency that some (see above) attribute to ANT was to be denied, as
those with a vested interest in ANT have labored to do, the locus of agency would
remain static.
116
In a model in which agency is distributed among human and nonhuman
actors, agency cannot be situated: it remains dispersed between multiple sites of action
and interaction. And for Luhmann, choices are less the result of human agency than of
the tension or pressure between a system and its environment: complexity forces
selection, which in turn generates contingency and ultimately risk.
The normative force of agency in genetics is recognized by Habermas, who
asserts that different grounds for legitimating and enacting choices carry fundamentally
different consequences. In The Future of Human Nature, Habermas raises the questions
about how to handle the new possibility of gaining knowledge of our genes. He asks:
116.
see for example: Bruno Latour, "Technology Is Society Made More Durable," in A
Sociology of Monsters: Essays on Power, Technology and Domination, ed. John Law (London:
Routledge, 1991); John Law, "Introduction," in A Sociology of Monsters: Essays on Power,
Technology and Domination, ed. John Law (London: Routledge, 1991); Williams-Jones and
Graham, "Actor-Network Theory."
65
Do we want to treat the categorically new possibility of intervening in the
human genome as an increase in freedom that requires normative regulation --
or rather as self-empowerment for transformations that depend simply on our
preferences and do not require any self-limitation?
117

This integration of genetic science into life practices requires the kind of external
agency that neither ANT's sense of distributed and always a posteriori agency, nor
Luhmann's sense of choice as a necessary afterthought of discrepancies between the
complexity of systems and environments, can provide. For Habermas, individuals and
collectives have the power to make choices as they relate new applied genetic
technology to their existing social practices. Their choices about the use of genetic
technology are situated either with the individual or the group but outside and prior to a
network that already presupposes the presence of technologies that allow for intervening
in the human genome.
The dispersed and a posteriori notions of agency of both ANT and Luhmann are
problematic if, as Habermas alludes, the specific locus of agency is contested and
contestable in the debate over whether or not to integrate genetic technologies into our
lives. For Habermas, there are two versions of agency in human genomics that seem
mutually exclusive. His quotation above shows that locating agency on the normative
level of regulation necessarily impinges and imposes limitations on the agency of
individuals. The clash, thus, is over whether the use of applied genetic technologies
117.
Jürgen Habermas, The Future of Human Nature (Malden, MA: Polity Press, 2003), 12.
These questions, Habermas contends, are necessary because we "no longer have any good
reasons for leaving such a dispute [concerning the 'good life'] to biologists and engineers
intoxicated by science fiction" (Ibid., 15).
66
should depend on the personal preferences and choices of individuals or on communally
held, shared, and agreed-upon rules. For Habermas, this difference between the two
types of agency is one between ethical and moral choice:
At first glance, moral theory and ethics appear to be oriented to the same
question: What ought I, or what ought we, to do? But the "ought" has a different
sense once we are no longer asking about rights and duties that everyone
ascribes to one another from an inclusive we-perspective, but instead are
concerned with our own life from the first-person perspective and ask what is
best "for me" or "for us" in the long run and all things considered. Such ethical
questions regarding our own weal and woe arise in the context of a particular
life history or a unique form of life. They are wedded to questions of identity:
how we should understand ourselves, who we are and want to be.
118
Thus for Habermas, the locus of agency can differ radically. It rests either with the
individual, whose sense of identity, self, and preference guides these decisions, or it
rests with a political and social collective, where commonly held and agreed-upon
beliefs guide choice.
119
The binary stasis that undergirds Habermas' sense of agency for
the integration of genetic knowledge into life and social practices differs from the
118.
Ibid., 3.
119.
See also Karl-Otto Apel, "Is the Ethics of the Ideal Communication Community a Utopia?
On the Relationship between Ethics, Utopia, and the Critique of Utopia," in The Communicative
Ethics Controversy, ed. Seyla Benhabib and Fred Dallmayr (Cambridge, MA: MIT Press,
1990); James Arnt Aune, "'Only Connect': Between Morality and Ethics in Habermas'
Communication Theory," Communication Theory 17, no. 4 (2007): 340-47; Celeste M. Condit,
"Crafting Virtue: The Rhetorical Construction of Public Morality," Quarterly Journal of Speech
73, no. 1 (1987): 79; Michel Foucault, Ethics: Subjectivity and Truth (New York: New Press,
1997); Habermas, "Discourse Ethics;" Jürgen Habermas, Justification and Application: Remarks
on Discourse Ethics, trans. Ciaran P. Cronin (Cambridge, MA: MIT Press, 1994); Michael J.
Hyde, The Ethos of Rhetoric (Columbia: University of South Carolina Press, 2004); James A.
Mackin, Community Over Chaos: An Ecological Perspective on Communication Ethics
(Tuscaloosa: University of Alabama Press, 1997); Alasdair C. MacIntyre, After Virtue: A Study
in Moral Theory (Notre Dame, IN: University of Notre Dame Press, 1984).
67
distributed agency of ANT. It puts at stake how the boundaries of normalcy and
acceptable risk
120
for the integration of genetic science into social and political spaces
are negotiated and managed.
Following Habermas, this dissertation works to expose the limited, contested
spaces of agency articulated as binary choices for clients of a biotechnological practice
by the institutional languages involved. Negotiating a shared, common locus of agency
is important because, as Habermas' question shows, actions grounded in different,
discrete loci of agency each come with different benefits but, combined in a context in
which they stand in contention, magnify complexity and expose individuals to risks.
What Habermas does not consider in The Future of Human Nature, however, is what
happens when, as is true in the current state of DTC genetics, multiple institutions
articulate different spaces for legitimate choice that necessarily coexist and clash: for
him, the choice between normative regulation and self-empowerment through private
preferences seems to be a binary one.
Thus, this dissertation follows Habermas' lead in recognizing the possibility of
(and need for) self-justified choice, but argues that such choice need not be informed
only by one or the other perspective. Instead, assembling multiple, polysemous
institutional perspectives into a contested, broad context requires a recognition of
120.
Douglas and Wildavsky, Risk and Culture.
68
agency as rhetorically framed, negotiated, and situated.
121
Rather than present binary
choices, this broad context assembles multiple institutional languages and puts them in
stasis with each other.
Both Hermagoras and later Cicero identified stasis as a point of contention or
standstill between competing positions.
122
Stasis brings together multiple perspectives
into a space where these clashes can be dealt with, negotiated, and ideally resolved
rhetorically.
123
Thus, approaching the external contention between the institutional
languages of DTC genetics as a stasis opens possibilities for recovering human agency
that go beyond binary choices. For the languages of DTC genetics, this rhetorical point
of view is possible because, as the dissertation will show in its main chapters, stasis
between the institutional languages is grounded in disagreement over where to situate
agency in the communicative practices that translate complex genetics into private or
public uses. As Michael Leff argues, the concepts of agency and rhetoric are
inextricably linked in the humanistic tradition.
124
But agency cannot be defined in
absolute terms, nor can it be located in a specific place: Leff argues that the nature of
121.
See e.g., Karlyn Kohrs Campbell, "Agency: Promiscuous and Prothean," Communication
and Critical/Cultural Studies 2, no. 1 (2005): 1-19.
122.
For the more contemporary context of bioethical decision-making, see also John H. Evans,
Playing God? Human Genetic Engineering and the Rationalization of Public Bioethical Debate
(Chicago: University Of Chicago Press, 2002).
123.
According to Cicero, stasis can have four levels, hierarchically arranged, through which the
stasis can be resolved: factual, definitional, qualitative, or procedural.
124.
Michael C. Leff, "Tradition and Agency in Humanistic Rhetoric," Philosophy & Rhetoric
36, no. 2 (2003): 135-47.
69
agency is, as he calls it, "productively ambiguous."
125
And indeed, in the last 20-odd
years, rhetorical theory has exposed agency as fluid, shifting, and problematic. The
"productive ambiguity" about the concept of agency has led to much discussion about
how and where to situate agency in rhetorical practice. The traditional view of situating
agency with a rhetor-as-agent has been called into question through the ideological turn
in traditional rhetorical studies,
126
the emergence of Foucaultian post-modernism,
127
as a
response to post-humanism,
128
or the presence of nonhuman actors among humans.
129
I
point out these studies not to position this dissertation within these debates over agency,
but to show that clash and ambiguity over where to situate agency can be approached
from a vantage point of rhetorical theory, and that thus analysis of how the competing
125.
Ibid., 135.
126.
See e.g., Bitzer, "Rhetorical Situation;" William R. Brown, "Ideology as Communication
Process," Quarterly Journal of Speech 64, no 2 (1982): 17-27; Thomas A. Hollihan and Patricia
Riley, "Rediscovering Ideology," Western Journal of Communication 57, no. 2 (1993): 272-77;
Michael Calvin McGee and Martha Anne Martin, "Public Knowledge and Ideological
Argumentation," Communication Monographs 50, no. 1 (1983): 47-65.
127.
See e.g., Raymie E. McKerrow, "Critical Rhetoric: Theory and Praxis," Communication
Monographs 56, no. 2 (1989): 91-111.
128.
See e.g., Barbara Biesecker, "Michel Foucault and the Question of Rhetoric," Philosophy &
Rhetoric 25, no. 4 (1992): 351-64; Christian Lundberg and Joshua Gunn, "Ouija Board, Are
There Any Communications?" Agency, Ontotheology, and the Death of the Humanist Subject,
or, Continuing the ARS Conversation," Rhetoric Society Quarterly 35, no. 4 (2005): 83-105.
129.
See e.g., Carolyn R. Miller, "Expertise and Agency: Transformation of Ethos in Human-
Computer Interaction," in The Ethos of Rhetoric, ed. Michael J. Hyde (Columbia: University of
South Carolina Press, 2004); Carolyn R. Miller, "What Can Automation Tell Us about
Agency?," Rhetoric Society Quarterly 37, no. 2 (2007): 137-57.
70
institutional languages of DTC genetics have grown to be in stasis to each other should
start with a consideration of those competing institutional languages as rhetorical.
The two chapters that follow illuminate the institutional languages available to
those who want to participate in DTC genetics. These languages represent state-of-the-
art communicative conventions as they are currently practiced within their respective
institutional sites. Chapter II deals with the market's discourse as the primary and most
direct institutional intermediary between DTC genetic technologies and clients. Chapter
III deals with the languages of nonmarket actors (federal legislation, medical
organizations, and public advocacy groups), all of which seek to reframe, limit, and
regulate the direct link the market establishes between clients and applied genetic
technologies. These chapters are not meant to indict the communicative practices of
each institutional site, as the texts chosen all are exemplary instances of refined,
thought-out communicative practices that genuinely seek to communicate to lay
audiences the complex genetic information they need to understand in order to relate
DTC genetics to their existing medical and social practices. Indeed, the texts represent
best practices of communication within their respective, distinct institutional contexts.
But what these chapters reveal is that how the communicative conventions of market
and nonmarket actors frame genetic complexity in relation to existing social practices
differs in one significant aspect: agency.
71
Chapter II
The Language of the DTC Genetics Market
Companies offering DTC genetic services have cropped up all over the internet
in the past few years. With nothing but a few quick twists of a cotton swab, they
promise to decode clients' susceptibility to cancer, blood clotting, hemochromatosis,
alpha-1 antitrypsin deficiency, sickle-cell anemia, cystic fibrosis, and many other
diseases. Other types of DTC tests can reveal the deep origins, lineages, and migration
patterns of our ancestors tens of thousands of year ago, beyond what even the most
meticulous paper trail genealogy can furnish. The genetic tests needed to accomplish
this can be taken from the comfort of one's own home, they are quick and time-efficient,
come at a relatively low price, and do not entail any of the physical or emotional
discomfitures of dealing with physicians, clinic personnel, or insurance agents.
The relative ease, speed, and cost-effectiveness with which customers can make
use of DTC genetic testing brings with it a number of benefits. DTC genetic tests are
virtually painless: the DNA sample collection is nonintrusive and easily accomplished
by the untrained individual. DTC genetic testing can be undertaken from the privacy of
one's own home, takes little time, and gives clients a chance to use genetic technology
without the privacy concerns that arise when insurance carriers, healthcare providers, or
other intermediary institutions become involved. For medical diagnostic purposes, DTC
genetic tests are cheaper than clinical genetic testing, and often cheaper even than
72
clinical non-genetic diagnostic tests. Above all, DTC genetic services can empower
clients: they give lay individuals access to cutting-edge technology that provides them
with information about their susceptibility to diseases, their resistance to drugs, their
deep ancestral roots, or a number of other health-related and non-health types of
information.
These benefits have potential downsides and risks. The risks of DTC genetics
arise through the trappings of the DTC business model. The DTC market model
removes experts as mediators grounded in traditional institutions (e.g., doctors in a
clinical or primary healthcare setting) from the interactions between the lay individual
and the company that provides access to advanced genetic science. This forces clients to
relate the complexities of genes, genetic technology, and the results they receive to their
existing social practices without the aid of a knowledgeable expert. The problem of how
the market can, through communicative practices, frame the complexities of this science
in the context of social practice without the help of intermediary experts leads to a
number of questions. How do providers of DTC genetic services address the rhetorical
problem of creating complex communicative practices for translating the complex
nature of genetics to lay audiences? In other words, how do they create an
understanding of genetic complexity that relates the scientific/mathematical
probabilities and the social/collective implications of genetic technology to the existing
social practices of their clients and, in so doing, extend to clients a sense of agency to
legitimate and integrate this new biotechnology into the social space? In their efforts to
73
create such state-of-the-art norms of communicative practice, how does the way in
which providers of DTC genetic services symbolically frame the material, biological
reality of genes and of genetic technology restore a sense of agency for clients to have
the power to make legitimate choices about their uses of DTC genetic technology? And
what are the normative implications of this emerging vocabulary and grammar, as it
constitutes a linguistic resource in and through which individuals can choose and justify
the integration of applied genetic technology into their lives?
To explore these questions, this chapter lays out the complex communicative
practices of providers of DTC genetic services. Inquiry into their communicative
conventions reveals how language can provide a heuristic that enables, but also puts
limits on a practice.
1
This chapter explores the market of DTC genetics: the companies
and businesses offering DTC genetic services, the procedures and practices of ordering
and taking a DTC genetic test, and the benefits and risks associated with them.
Following the typology of DTC genetic services in Chapter I, the chapter consider two
types of genetic service: health-related and non-health genetic services. Using one
representative example from each category (a hemochromatosis test from DNA Direct
and an ancestry test from the Genographic Project), the chapter analyzes how the DTC
genetics market shapes a unique language to address the rhetorical problem discussed in
Chapter I: a language that can act as a heuristic for making DTC genetic technology part
of the lives of clients and customers. Thus, in the first part, the chapter presents an
1.
See e.g., Katz and Miller, "Low-Level Radioactive Waste Siting Controversy," 132.
74
overview of health-related and non-health genetic services: the companies that are
involved, the genetic services they sell, and the communication practices through which
clients can make use of their services. In a second part, the chapter analyzes the primary
texts involved in the practice of researching, purchasing, and taking these tests to
exemplify and explore how providers of DTC genetic services structure heuristic lenses
that frame complex applied genetics in relation to the existing social structures and
practices of clients.
The Field of DTC Genetics
The Health-Related DTC Genetics Market
When precisely a health-related genetic test first was offered over the internet
directly to clients is uncertain. The idea of offering complex genetic technology to a
wide range of lay individuals at consumer prices has been prominent for a long time,
and it fueled many of the utopic and dystopic visions about genetics and society. But the
profitability of a DTC genetics model generally has not been able to keep pace with
these grander visions of personalized genetic technology. Knowledge of how particular
genetic mutations were linked to diseases or ancestral origins remained nebulous for all
but a few genetic mutations. Genetic sequencing was (and to a degree still remains)
expensive. And in the pragmatic terms of the market, brick-and-mortar solutions would
have added expenses and restricted the reach of businesses, while over-the-phone
75
solutions would have required a large staff for extended explanations of this complex
technology to lay consumers.
These issues began to disappear around the turn of the millennium. On the
research side, the completion of the Human Genome Project engendered an arms race
between different organizations and international consortia. This race led to the rapid
discovery of a large number of genetic mutations that could be linked to specific
diseases or other biological markers. On the business side, the implementation of the
World Wide Web standards in 1990 led to a rapid expansion of the internet. Growing
acceptance of e-commerce toward the end of the 20th century made it possible for
companies to sell genetic tests online without the expenditures required to maintain
storefront properties or a large sales staff. The oldest DTC genetics company still in
existence, Genelex, was incorporated in 1987. Many followed, with the shared goal of
making the use of applied genetic technology as simple and accessible as possible to
individual customers who do not wish to go through genetic testing within the
traditional strictures of clinical healthcare and medicine.
Taking a health-related DTC genetic test. Despite the differences in how they
distribute diagnostic technology, DTC genetic services are similar to their clinical
counterparts. Samples of body tissue or fluid are collected, these samples are sent to a
lab, and results are communicated to clients. DTC genetics operates outside a context
that would allow for constant interactions between provider and client within a clinical
space, however, and a few important differences between genetic and clinical practices
76
characterize this field. To collect tissue with genetic samples, companies mail a cotton
"swab" (in reality a long scraping device with a bristly or tooth-like tip) that clients use
to scrape cells off the inside of their cheeks. The tip is deposited either straight into a
specimen envelope or into a liquid-filled vial, sealed, consent forms are signed, and the
package is mailed back to a specified address. In most cases, all or most components of
this process -- vials, swabs, bags, and envelopes -- are marked with a barcode and ID
that anonymously match the client's information in the company's internal database. The
DTC genetics company takes care of lab instructions (or sequences tests in-house).
During the following weeks, the provider analyzes the sample(s), matching the
information to the client's file and identifier. Sometimes, clients can follow the progress
of their sample on the company's website. Eventually, results are posted online in a
login/password protected environment accessible only to the client.
The process is simple, relatively cost-efficient, and provides maximum comfort
and privacy. A small number of companies are currently on the market to provide
individuals with these benefits of health-related genetic technology. Genelex (http:/
/www.genelex.com) is one of the oldest companies in the DTC genetics field. The
company offers a range of services, including ancestry tracking, paternity testing,
nutrigenetics, and pharmacogenetics. Their Health & DNA section offers clients
looking for health-related genetic testing the option of purchasing tests for
hemochromatosis, celiac disease, gum disease, and narcolepsy. DNA Direct (http:/
/www.dnadirect.com) provides customers with the largest palette of health-related DTC
77
genetic tests, including tests for blood clotting, breast and ovarian cancer, colon cancer,
cystic fibrosis, diabetes risk, hemochromatosis, infertility, and a panel of tests targeted
for people with Ashkenazi Jewish ancestry (including Bloom syndrome, canavan
disease, familial dysautonomia, fanconi anemia, Gaucher disease, mucolipidosis type
IV, Niemann-Pick disease, and Tay-Sachs). DNA Direct's focus is on health-related
genetic services, but the company also offers limited pharmacogenetic testing and
ancestry tracking. CyGene Laboratories (http://www.cygenelabs.com) does not focus
exclusively on DTC consumer oriented testing, but offers a number of DTC health-
related genetic tests through its CyGene Direct department, including tests for
osteoporosis, thrombosis, glaucoma and macular degeneration, metabolic health
assessment, and athletic performance. GeneLink (http://www.bankdna.com), one of the
few publicly traded companies in the field of health-related DTC genetic services, offers
genetic assessment of oxidative stress, cardiovascular health, lipid metabolism/
metabolic syndrome, bone health assessment, and CoQ10 efficiency. GeneLink also
offers tests that are marginally health-related, such as a healthy aging assessment, a
dermagenetics skin health test, and a nutrigenetics test. This list is not exhaustive but
provides an overview of the kind of services offered by providers of health-related DTC
genetic technologies.
DTC genetics is not the only business model represented in the market. A
subgroup in the field of health-related DTC genetic services consists of companies that
market genetic services to clients, but do not sell them directly to individuals. Kimball
78
Genetics allows individuals to directly order from them but require clients to call and
speak to a genetic counselor before ordering a test. The company further requires clients
to submit their physician's contact information -- without this information, the company
will not continue with the testing process. deCODE Genetics -- primarily a
biopharmaceutical company that uses genetics to develop drugs -- has begun offering
two diagnostic tests, but allows their atrial fibrillation test to be ordered through a
doctor only. For their type 2 diabetes test, they refer clients to a specialized DTC
genetics company (namely, DNA Direct) that offers deCODE's test on their behalf.
Clinical Data, Inc. (http://www.clda.com), a company that sells laboratory equipment
for genetic testing, also offers a few pharmacogenetic tests as well as one health-related
test for cardiac channelopathies, Long QT Syndrome, and Brugada Syndrome. Clinical
Data, Inc., also requires a physician to mediate the testing interactions between the
company and the individual client. And Myriad Genetics (http://www.myriad.com), a
company that recently garnered widespread attention and criticism when it launched the
first large-scale ad campaign for a DTC genetic test, requires a physician to order and
administer its tests for hereditary breast and ovarian cancer, hereditary melanoma,
adenomatous polyposis syndromes, and hereditary nonpolyposis colorectoral cancer.
Because these companies do not offer true DTC genetics services and exist in a hybrid
space between DTC genetic technology and clinical genetics, they are outside the scope
of this study.
79
Benefits and risks. DTC genetics companies purport to offer cost-efficient,
anonymous, painless, critical health information based on highly complex genetic
sequencing. The benefits of such a practice are perhaps best illustrated by the following
excerpt of a story told by a news magazine. "Ellen" who had a history of breast cancer
in her family wanted to get tested to gain some certainty about her own future, but did
not want the results to become part of her medical record.
2
Myriad Genetics, a pioneer
of BRCA genetic testing, did not allow her access to the test without a physician's
signature: Myriad Genetics' policy is that while they offer tests directly to lay
customers, these customers must go through a physician to access the test and the test
results. This policy ensures that customers have the proper explication and followup
discussions to test results, but it would make "Ellen's" genetic data part of the very
system she tried to circumvent. DNA Direct, a DTC genetics company based in San
Francisco, did allow her to test for BRCA mutations directly and without the traditional
healthcare/insurance setting as an intermediary. "Ellen's" results were positive, and with
genetic counseling from DNA Direct and later consultation with her doctor, she could
take preventative steps against breast cancer. "Ellen's" story highlights the benefits of
DTC genetics: she wanted full privacy for her genetic information in case her results
were negative. At the same time, in the case of a positive result, she needed access to
the traditional healthcare system, since genetic testing can only predict but not yet heal a
disease. "Ellen's" story is undoubtedly an ideal case, where she could reap the full
2.
Shute, "Reading Your Genes," 51-52.
80
benefits of DTC genetics. But it illustrates the potential to empower individual lay
customer to gain critical health information and make important health decisions that
they otherwise could or would not make.
Despite their advantages, health-related DTC genetic services suffer from a
number of shortcomings when compared to more traditional, clinical analysis. This is
particularly true when it comes to the accuracy of results and the actions that can be
taken in response to them. Non-genetic clinical assessments generally seek a binary
result -- whether a patient carries specific disease-causing agents or not -- and
communicate that result with a varying but often high degree of certainty. The
relationship between a positive result and a disease is far more complicated in genetics.
Genetic testing looks for genetic susceptibility to a disease that, unlike a viral infection
or cancerous growth, cannot be targeted directly with the intent of removing the
disease-causing agent. At best, a disease can be anticipated and managed: the results of
health-related genetic testing indicate a probability of carrying a disease in a contingent
future. A small number of diseases can be anticipated with near certainty. Cystic
fibrosis or Huntington's disease, for example, can be predicted with near certain
accuracy if specific genetic mutations are found. For these cases, anticipation is the only
possible action, however: treatments, whether genetic or molecular, are not available.
The psychological burden of knowing about the inevitable onset of an incurable disease
like Huntington's makes the results of this type of health-related genetic tests a difficult
burden to bear, and the choice to take a test a difficult one to make.
81
Most genetic mutations that can be sequenced through DTC genetic services
yield less certain results than Huntington's or CF. Diseases and health problems ranging
from various cancers to heart disease or osteoporosis cannot be predicted with certainty
through genetic testing. Genes that indicate these diseases show susceptibility to the
disease rather than the certainty of having it now or in the future. A positive test result
still would enable clients to pursue a number of preventative responses, ranging from
invasive surgery to lifestyle changes (smoking, diet).
3
Receiving a negative test would
not preclude the possibility of having the disease either in the future or contracting it
through means other than genetic ones. Sometimes, this tenuous susceptibility even can
be indirect: an osteoporosis test like the one offered by GeneLink looks for genes
related to bone density and bone loss, which helps predict susceptibility to osteopenia,
which in turn may lead to osteoporosis. And environmental factors add to genetic risk:
colon cancer, for example, can be introduced by heightened genetic susceptibility, but
factors like smoking or diet that are under the client's control can either enhance genetic
susceptibility significantly or cause colon cancer despite an absence of genetic markers.
Thus, for diseases that can be predicted with near certainty and for those that
cannot alike, one significant shortcoming remains. To date, health-related DTC genetic
services can reveal susceptibility to serious diseases but remain unable to treat or cure
the eventual onset of many, if not most, of the diseases they foreshadow. This gap
3.
See e.g., Robert Langreth, "Never Mind You--What About Me?," Forbes.com, June 18,
2007, http://www.forbes.com/free_forbes/2007/0618/052b.html (accessed June 1, 2007,
archived by WebCite at http://www.webcitation.org/5PHdizTHs).
82
between diagnosis and treatment poses a heuristic problem to providers of health-related
DTC genetic services.
4
A company offering these tests must be able to communicate to
clients that a genetic test's results cannot indicate that the client will have a disease with
absolute certainty. Nor can it indicate that the highly probable nature of results means
clients can use them for informational purposes only and do not need to be concerned
about the likely onset of a disease. Companies must convey that, contrary to expected
practices of non-genetic diagnosis, the presence of an abnormal agent (here a genetic
mutation) does not indicate the presence of a disease. In so doing, providers must find
means to overcome the heuristic burden of genetic determinism and underdeterminism
that posits the radical presence or absence of the link between mutation and disease.
And because the relationship between the presence of a mutation and a disease is
governed by highly complex probabilities, conveying these mathematically complex
probabilities while overcoming the radically simplifying draw of genetic determinism
poses a challenging communicative problem.
What complicates this challenge is the fact that the results of a genetic test
cannot be limited to the purview of the individual test taker. Genes and genetic
mutations are not unique to individuals: siblings share many genes and genetic
mutations, parents and children share a large number of them, and more distant
4.
This is not to say that diagnoses are always stable and lead to effective treatments in a
clinical setting, but only that the aim of clinical medicine is a binary diagnosis followed, if
necessary, by the removal of an illness or the underlying agent, whereas the aim of genetic
testing, to date, can be neither binary diagnosis nor the removal of genetic mutations.
83
relatives, too, always share some genes with the individual taking the test. Blood-related
family members thus are implicated in the results gained from a test.
5
This implication
goes beyond the social or familial implications that, for example, a diagnosis of a
serious non-genetic disease would have on the family around the individual patient. In
genetics, the implication is biological: blood-related family members could be exposed
to the same susceptibility (or in the case of, e.g., Huntington's, certainty) of having the
disease in the future. An individual who chooses to undergo a genetic test thus always
implicates family members in that practice, but frequently does so without their explicit
consent
6
or without their full understanding of what implications a test result could have
for their own lives.
These issues have not gone unnoticed by actors outside the market. The gap
between diagnosis and therapy and the difficulties imposed by the mathematical and
social complexities that these companies have to be able to communicate put companies
that offer health-related DTC genetic services under regulatory scrutiny. Major privacy
5.
See e.g., Susan M. Cox and William McKellin, "'There's This Thing in our Family':
Predictive Testing and the Construction of Risk for Huntington Disease," Sociology of Health &
Illness 21, no. 5 (1999): 622-46; Gordon R. Mitchell and Kelly Happe, "Informed Consent After
the Human Genome Project," Rhetoric and Public Affairs 4, no. 3 (2001): 375-406; Sara Taub,
Karine Morin, Monique A. Spillman, Robert M. Sade, and Frank A. Riddick, "Managing
Familial Risk in Genetic Testing," Genetic Testing 8, no. 3 (2004): 356-59; Julie Wallbank,
"The Role of Rights and Utility in Instituting a Child's Right to Know Her Genetic History,"
Social & Legal Studies 13, no. 2 (2004): 245-64.
6.
In my research, I could not find one informed consent document that would require closely
related family member to give consent for a genetic test. They all warned of familial
implications, but never required formal consent. Chapter IV discusses this issue, among others,
in more detail.
84
legislation like the Genetic Information Nondiscrimination Act (GINA) or clinical
standards acts like the Clinical Laboratory Improvement Amendments (CLIA) may not
target explicitly health-related DTC genetic services, but they encompass health-related
genetic services in their regulatory purview to different extents. A set of more directed
legislative documents target DTC genetic services directly. Recommendations by the
Secretary's Advisory Committee on Genetic Testing in 2000 and Senate hearings on at-
home genetic testing in 2006 both center on health-related genetic services (with a few
minor exceptions) and go as far as to call DTC genetic technology potentially
"detrimental to public health." Concerns about public good notwithstanding, health-
related DTC genetic services remain largely outside the regulatory arena in which other
medical technologies operate. Genetic services remain less strictly institutionalized than
traditional medical, biotechnological, or pharmaceutical companies. Many of the more
respected DTC genetics companies voluntarily choose to operate within established
institutional spaces: some use labs with CLIA compliance for their testing or follow
strict privacy regulations. The overlap between health-related DTC genetics and the
established institutional norms and practices of government regulation and healthcare,
however, remains small. The DTC genetics industry largely operates outside legislative
jurisdiction.
7
7.
Chapter III takes a closer look at these various legislative texts, and what implications the
way in which they communicate about the risks of DTC genetics has on the overall practice.
85
DTC genetic services thus operate largely outside the institutional boundaries,
norms, and practices of traditional healthcare and diagnostic medicine. But the
communication complexities of conveying relevant mathematical and social
information to lay clients requires these companies to translate highly complex
scientific concepts for lay publics. Outside of the established translational practices of
informed consent, doctor-patient conversations, and other sense-making mechanisms
deeply embedded in the discourses of traditional healthcare institutions, the burden of
productively and successfully framing genetic complexity in relation to existing social
practices falls to the providers of health-related DTC genetic services. Crafting
appropriate communicative practices is challenging. The object whose communicative
integration into lay practice is at the center of this study's exploration of health-related
DTC genetics represents and reflects this complexity. To explore the market language
of the health-related segment of DTC genetics, this chapter's analysis focuses on a test
for hemochromatosis. The genes and mutations that stand at the center of a
hemochromatosis test are representative of many of the communication complexities
and challenges discussed thus far: they are complex, both in terms of their scientific and
probabilistic characteristics and in terms of the social links their presence can
complicate.
The case of hemochromatosis. Hemochromatosis is not among the more well-
known diseases, nor is it one that first comes to mind when thinking about health-
related DTC genetic testing. Yet, hemochromatosis is a test typical of the kinds of tests
86
offered for DTC genetic testing because it shares many characteristics with other
diseases for which DTC genetic tests are frequently offered. First, hemochromatosis is
widespread among the U.S. public. Second, the genetic mutations that reveal
susceptibility to the disease cannot be linked with certainty to the eventual onset of the
disease. Third, hemochromatosis can mask as a number of other diseases and thus, even
though it is hereditary, it is difficult to know conclusively whether it runs in one's
family. Hemochromatosis thus shares a range of characteristics with other diseases that
are offered frequently by providers of health-related DTC genetic services, like cancer,
cystic fibrosis, alpha-1 antitrypsin deficiency, and sickle-cell anemia.
Hemochromatosis is one of the most prevalent diseases in the United States.
8

Various studies have talked about introducing regular genetic screening for the most
common mutations of the HFE gene (albeit, to date, without conclusive results).
9

Hemochromatosis is an iron overload disease that can cause liver problems, heart
disease, arthritis, thyroid problems, and other complications. Hereditary
hemochromatosis, caused by mutations in the HFE gene (the HFE gene is found on the
6th chromosome, and three of the most common mutations that signal heightened
8.
See e.g., Elizabeth Barry, Teresa Derhammer, and Sarah H. Elsea, "Prevalence of Three
Hereditary Hemochromatosis Mutant Alleles in the Michigan Caucasian Population,"
Community Genetics 8, no. 3 (2005): 173-79; Carolyn Hoppe, Robert M. Watson, Christoper
Long, Fred Lorey, Lara Robles, William Klitz, Lori Styles, and Elliott Vichinsky, "Prevalence
of HFE Mutations in California Newborns," Pediatric Hematology and Oncology 23, no. 6
(2006): 507-16.
9.
Ibid.; Evelyn P. Whitlock, Betsy A. Garlitz, Emily L. Harris, Tracy L. Beil, and Paula R.
Smith, "Screening for Hereditary Hemochromatosis: A Systematic Review for the U.S.
Preventive Services Task Force," Annals of Internal Medicine 145, no. 3 (2006): 209-23.
87
susceptibility to hemochromatosis are C282Y, H63D, and S65C), allows the body to
absorb too much iron that is deposited in various organs through the blood stream. Like
most other genetic tests, the genetic test for hemochromatosis does not indicate the
presence of the disease; instead, it can find whether mutations in the HFE gene are
present that could predispose someone to hemochromatosis. The test is neither
diagnostic nor with certainty predictive of the onset of the disease. Furthermore, most
hemochromatosis tests look for a few of the most common mutations (in the case study
example, DNA Direct tests for the aforementioned three mutations) but leave open the
possibility of carrying less common mutations that also may cause hemochromatosis.
Hemochromatosis testing often is recommended when one or both parents are
known to have mutations in their HFE gene or exhibit symptoms of hemochromatosis.
Hereditary hemochromatosis passes in an autosomal recessive
10
pattern from generation
to generation. If one parent is a carrier (someone who carries a mutation on only one of
the two #6 chromosomes) and another parent does not carry any mutation, their child
would have a 25% chance of being a carrier (heterozygous) but could not be fully
affected. If both parents are carriers, each has a 50% chance of passing on the affected
chromosome, and their child has a 25% chance of carrying the mutation on both #6
chromosomes (homozygous), a 50% chance of being a heterozygous carrier, and a 25%
10.
"Autosomal" refers to the mutation's location on chromosomes #1-22, in this case #6;
recessive indicates that more than one mutation must be present for symptoms to develop, while
carrying only one mutation exposes the carrier to little risk, yet leaves open the possibility of
passing down the mutation to children.
88
chance of not being affected. If both parents are homozygous, the child has a 100%
chance of being homozygous as well.
These mathematical probabilities are well-known and established. In other
words, there is no chance that two homozygous parents could have a child without
mutations that would make it susceptible to hemochromatosis. Nonetheless, when
hemochromatosis testing is recommended for family planning purposes, understanding
these probabilities and making choices based on them becomes more difficult.
Questions about how to value the worth of an unborn, not-yet-conceived child in
relation to the unknown possibility
11
of developing a disease that is harmful, potentially
deadly, but (given the uncertainty of future research) also potentially correctable, pose
difficult ethical choices to would-be parents. So do more wide-reaching questions about
approaching genetically related family members in the case of positive test results. Such
issues put at stake questions about self-worth in relation to the worth of others. Does the
knowledge of having these mutations and the consequent ability to take preventative
steps to prevent hemochromatosis outweigh the choices that blood-related relatives now
have to make without their explicit intention and consent? Or in the case of a negative
test, does an individual have the right to ask her/his partner to be tested as well for the
benefit of yet-to-be-born or already-born children?
11.
For while the probabilities of passing on hereditary chromosomes are well-known, the
chance of developing hemochromatosis when mutations are present remains unknown and
contingent.
89
These and similar complexities make hemochromatosis testing a difficult field to
navigate. The risks to which an individual is exposed lie less in the direct physicality of
the test (both blood tests and the cheek swab tests of the DTC industry carry virtually no
risk of physical harm) than in the choices that clients have to make before and after a
test
12
: decisions about involving biologically or socially related family members in the
process, about how strongly test results should impact family planning, or about the
extent of taking preventative efforts in response to merely probable outcomes.
Hemochromatosis and many similar health-related tests on the market are not
the only type of DTC genetic test to expose customers to these types of risks, however.
On the surface, non-health genetic tests may inherently be less risky than health-related
ones. But non-health tests, too, carry these risks and also introduce their own, unique
types of risk.
The Non-Health DTC Genetics Market
Genetic research often is justified by its potential to diagnose and eventually
cure currently incurable diseases. Diagnostic and, eventually, therapeutic services rank
high in importance, and the spotlight of both regulative efforts and public attention
frequently falls on them. To date, however, therapeutic genetic services remain elusive.
Diagnostic technology is more readily available, yet remains hampered by the paucity
12.
See e.g., Tara E. Power, Paul C. Adams, James C. Barton, Ronald T. Acton, Edmund Howe,
Shana Palla, Ann P. Walker, Roger Anderson, and Barbara Harrison, "Psychosocial Impact of
Genetic Testing for Hemochromatosis in the HEIRS Study: A Comparion of Participants
Recruited in Canada and the United States," Genetic Testing 11, no. 1 (2007): 55-64.
90
of therapeutic offers. The disadvantages of health-related genetics open DTC genetic
technology to a wider range of purposes than the diagnosis of potential health-related
issues. The most popular of these non-health genetic services -- ancestry tracking --
gives clients not a forward-looking insight into their future health but a look back into
their deep ancestral past. Non-health genetic services may be a luxury rather than a
necessity, and little regulative efforts from legislators, public advocacy groups, and
medical organizations are wasted on them. But in the market of DTC genetic services,
they are popular, even more so because they can avoid the already lax regulation of
health-related DTC genetic services. Because non-health genetic services constitute a
large and important slice of the DTC genetics market, and because, as Chapter IV will
show, real risks are associated with them, non-health services warrant inclusion in this
study, even if only to introduce them and the risks associated with them into a nascent
conversation about DTC genetic technologies that tend to ignore these types of services.
Taking a non-health DTC genetic test. On the client-side, non-health genetic
services functionally work the same as health-related genetic services. Companies mail
the same swab to clients, who then collect DNA samples from their cheeks and return
them in specially designed envelopes to the provider of the genetic service or an
external laboratory. Clients then follow the progress of their sample on the company's
website. Eventually, results are posted online in a login/password protected
environment. Throughout the analysis, only a little sliver of the client's genome
becomes revealed. Because sequencing an entire human genome still carries
91
astronomical costs, selectively identifying and analyzing small segments that are
relevant to the services offered is the only practically feasible choice. As a consequence,
little medically relevant information is decoded and revealed. The narrow scope and
type of genetic information decoded even leads some, like Ronald Green, director of
Dartmouth College's Ethics Institute, to call "genealogy-oriented test results [...] 'pretty
useless information.'"
13
The market presence of non-health genetic testing services contradicts Green's
belief about the usefulness of non-health genetic testing, however. On the market, non-
health peripheral services outnumber health-related services.
14
Because providers of
non-health genetic services are scrutinized by regulatory institutions even less than their
health-related counterparts, non-health services come in manifold facets and many
companies offer a range of different services. These include ancestry tracking packages
that try to match the DNA of clients to geographic regions, relational tests to determine
paternity or biological relationships between twins, siblings, or more distant familial
categories (for an additional fee, these services often come with accompanying legal
documents to be used in paternity or immigration trials, or can be done without the
father's consent), DNA security and ID options, banking and safeguarding of
individuals' DNA for later use, and even a test for caffeine tolerance (or more
13.
Dotinga, "Home DNA Tests Just a Click Away."
14.
See e.g., Gollust, Wilfond, and Hull, "Direct-to-Consumer Sales of Genetic Services on the
Internet."
92
accurately, the rate of caffeine metabolism) that makes claims to linking a neologistical
"CaffeineGen" to nonfatal heart attacks. Recently, one company (DNAPrint Genomics),
best known for its variety of ancestry tests, even offered an ancestry test for dogs --
"Doggie DNAPrint."
Non-health genetic services may reveal little information but this information
remains complex and, as Chapter IV will show, exposes clients to significant risks that
are in some ways similar and in others different than the risks from health-related
genetics. Like health-related DTC genetic services, non-health tests deal with highly
complex scientific information and advanced genetic technologies. Some of the niche
market tests try to predict real conditions that are far removed from what genetic
mutations can indicate or predict. Caffeine tolerance or nutritional advice, for example,
must be extrapolated from genetic information that cannot be linked directly to the
physical manifestations they try to predict. For genetic ancestry tracking, the
relationship between mutations in the Y-chromosome or mtDNA to ancestral migration
patterns and origins (particularly ones that pinpoint geographical locations with a high
degree of accuracy) can be ambiguous at best. And as was true for health-related tests,
the gap between the presence of a mutation and the physical manifestation of an
outcome is governed not only by complex mathematical probabilities but further
compounded by social ones. An ancestry test, for example, carries implications for close
relatives, especially if the results convey unexpected information that could result in
problems regarding identity or privacy.
93
A popular choice: ancestry tracking. Among non-health genetic services,
ancestry tracking is among the most easily accessible and most frequently used test. The
range of ancestry tests is large. To list all companies that offer these services would be
futile: they are numerous, and they disappear and appear at an almost weekly rate. Some
of the largest and most well-known representatives in the field of ancesstry tracking
warrant mention, however. IBM/National Geographic's Genographic Project (https:/
/www3.nationalgeographic.com/genographic), Family Tree DNA (http:/
/www.familytreedna.com), Gene Tree (http://www.genetree.com), DNA Heritage (http:/
/www.dnaheritage.com), DNA Worldwide (http://www.dna-worldwide.com), DNA
Print Genomics (http://www.dnaprint.com), HomeDNA (http://www.homedna.com),
The Genetic Testing Laboratories (http://www.gtldna.net), the DNA Diagnostics Center
(http://www.dnacenter.us), or aforementioned Genelex (http://www.genelex.com) and
DNA Direct (http://www.dnadirect.com) all vie for a slice of the increasing on-line
genealogy market. Many of these companies also offer other non-health services, like
paternity testing. A few, like Genelex or DNA Direct, offer both health and non-health
services.
Most genetic ancestry tests closely resemble each other. Two different tests are
offered most commonly: Y-DNA tests for paternal lineage and mtDNA tests for
maternal lineage, or combo packages offering discounts for choosing both. Both Y-
DNA and mtDNA tests look for so-called "markers" (in actuality a known and varying
range of nucleotide pairs along a specific DNA strand) on either the Y-chromosome in
94
the nucleus of a cell or in the DNA of a cell's mitochondrion, respectively. Mutations on
the Y-chromosome and mtDNA reveal information about the carrier's ancestral past: as
tribes split and migrated into different parts of the world, small mutations on their DNA
were passed down to members of specific tribes and sub-tribes. These mutations (so-
called "haplogroups") thus uniquely identified these tribes.
15
Because both men and women carry mtDNA but the Y-chromosome is found
only in men, only male clients can choose to test for both paternal and maternal lineage.
Female clients can test for maternal lineage but must rely on a close male relative's Y-
chromosome to get information about their paternal lineage. Y and mtDNA tests
frequently are offered in different resolutions. Some services allow the client to choose
between cheaper options that test for a limited number of genetic markers or a more
expensive, high-resolution option that tests for more markers and allows for more
specific ancestral identifications. Beyond that, some companies offer advanced
haplogroup-specific clade tests, or tests linked to various institutional purposes.
Immigration and taxation, for example, are areas in which certificates from genetic
ancestry and relational tests can be used to get visas for close relatives or prove
membership in tax-advantaged groups.
The primary goal of these tests is to identify the geographic location of a client's
distant ancestors and their migration routes. Through images and text, the company
15.
For a more detailed overview of the science behind ancestry genetics, see Mark D. Shriver
and Rick A. Kittles, "Genetic Ancestry and the Search for Personalized Genetic Histories,"
Nature Reviews Genetics 5, no. 8 (2004): 611-18.
95
offering the test shows clients both. On large, glossy maps that are shipped to the
customer or displayed online, the ancestral origins and the migration patterns of a
multitude of tribes are displayed. Each migration route is labeled by its unique set of
genetic mutations: the M130 haplogroup moves into Australia, M170 into western
Europe, P15 into southeastern Europe, M45 into central Asia, all of these and many
others further splitting into new haplogroups that move in new directions.
16
On their own, DNA tests can identify one's distant ancestors' geographic
location more or less accurately, but they cannot identify one's living ancestors. For
ancestry services to partake of the lucrative genealogy market,
17
however, identifying
specific ancestors is precisely what is of central importance. To that end, some
providers combine ancestry DNA testing with so-called "surname projects." Clients
send in a DNA sample for a test of their choice but also are included in a list of people
with the same (or similar) surname. If a client's surname matches those of a given
group, his or her DNA samples are matched to others in that group. If key genetic
markers match those of other clients in the group, a likely familial relationship exists
between the two and, depending on the group's or individual's privacy settings, the
business provides both parties with contact information. Creating an extended
16.
For an excellent interactive map of migration routes, see https:/
/www3.nationalgeographic.com/genographic/atlas.html.
17.
Margot Hornblower, "Roots Mania," Time Magazine, April 19, 1999.
96
genealogy becomes easier than sifting through historical documents to find one's distant
ancestors.
Ancestry tracking exemplifies the potential of non-health genetic technology. It
anchors an image of one's distant past in the biological certainty of roughly 3 billion
nucleotide pairs, a past that thus far had to rely on the contingent knowledge of familial
genealogies maintained by the contingent residues of oral family history, social
institutions, and legal archives. Where the hydrogen bonds of DNA ensure a level of
consistency across time, the accuracy of traditional genealogy declines exponentially
with every generation. But as every technology that offers great rewards, ancestry
tracking has its risks. The ontological depth it exposes through biological computation
reaches to the core not only of the biological self but also the social and cultural
structures in which the self is embedded. This transgression from biological certainty
made visible through technology into the contingent social spaces that give meaning to
individuals requires a language of sense-making that can communicate the
mathematical and social complexities into a lay public practice. As is the case with
health-related services, crafting a language that can act as an effective heuristic is
difficult. The objects such a heuristic must make sense of are complex, and they call for
complex choices and decisions to be made: in the case of non-health/ancestry tracking,
the genes in the Y-chromosome and mtDNA are complex in terms of their scientific and
probabilistic characteristics and in terms of the social links they establish or negate.
97
Both the health-related hemochromatosis test and the non-health ancestry test
thus stand on a firm genetic foundation. The predictive qualities the tests advertise to
their clients are enabled by the fact that susceptibility to hemochromatosis and ancestral
origins and migration patterns are embedded firmly in our DNA. The precise nature of
this genetic foundation is complex, however. Hemochromatosis can be the result of a
variety of genetic mutations and the hereditary passing of these mutations rests on
complicated mathematical probabilities. For ancestry tracking, mutations in our Y-DNA
and mtDNA mark specific evolutionary migration routes and allow sequencing
machines to unearth deep ancestral origins. But mapping mutations to specific ancestral
regions and migration patterns remains a complex, contingent, and uncertain endeavor.
This complexity asks for complex communication practices. Providers of DTC genetic
services cannot assume that their lay clientele know how to interpret both the
possibilities and the limitations of what their genes can reveal about themselves. What
is required of both health-related and non-health providers of DTC genetic services is a
rhetorical heuristic for crafting communicative practices: a heuristic that can
communicate the complexities of these tests successfully and integrate this new,
complex element of nature into existing social practices. In order to convey the
complexities of what the applied genetic technology they offer can do, and what
limitations it has, providers interact with clients through a language of sense-making
that is structured around three communication steps.
98
The Communicative Steps of DTC Genetics
Because the DTC model requires direct interaction between the client and the
business that offers access to applied genetic technology, the communicative steps that
guide interactions take place in writing.
18
Written materials guide clients through the
process of purchasing and using a genetic test in a manner similar to what clients would
experience in a clinical setting. The first step is informational and takes place prior to
the purchase of a test. A range of visual and textual materials tell clients what they need
to know: that genetic testing indicates susceptibility rather than presence of a disease,
that genetics is hereditary and results can affect genetically linked family members,
what the test is and is not designed to reveal, and often additional information about the
disease for which the test sequences. The second step is transactional. It takes place
during the test's purchase, and presents clients with informed consent forms and other
legal documentation to inform them about the potential risks to which they are exposed.
Frequently, these forms also provide information about the legal regulations (e.g., CLIA
compliance) under which the company operates either voluntarily or by mandate, and
outline the rights of both client and company. The third and possibly most critical step
is evaluative. After lab results have been returned, clients are informed of the results.
This information generally comes in the form of a written multi-page report that
18.
While some providers of DTC genetic services offer optional phone counseling, the DTC
model relies on written words for most or all of its communicative interactions.
99
describes what, if any, genetic mutations have been found.
19
It then explains, in varying
detail, what these findings mean, and what implications they could have for the client.
The former is a problem of communicating complex science and mathematical
information of heredity to lay clients; the latter is a problem of communicating to clients
the health and lifestyle implications for them and for their families.
These communicative steps are a critical component of the health-related DTC
genetics business. The texts that structure DTC genetic practices represent the
companies' efforts to create a hermeneutic through which clients can make sense of the
material reality of genes. Successful communication of complex science provides an
understanding of risks and consequences that then can enable a successful integration of
genetic technology into the lives of individual clients. Because the DTC business model
relies on written messages that separate clients from providers both spatially and
temporally,
20
these texts often represent the only interaction between the business and
the client. The texts that constitute aforementioned communicative steps therefore
anchor how clients perceive genes and genetic technology, what expectations they have
for the tests, and what consequences and responsibilities they draw from the results.
These communicative interactions are made difficult by the complexity of the
science. The complex nature of genetics requires providers of DTC genetic services to
19.
Some offer free genetic counseling post-testing: test results are revealed online or per mail,
but genetic counselors are available by phone to discuss the results, implications, and possible
future steps. This service is rare, however, and is never compulsory.
20.
See Ong, Orality and Literacy.
100
create a language through which clients can understand and make sense of genetics as a
personalized biotechnological practice. Genetic complexities arise from a frequent
deterministic understanding of the gene-as-object that collapses the presence of a
genetic mutation with the presence of a disease and obscures the often probabilistic,
contingent, and tenuous relationship between genetic mutation and disease. Genetic
complexity lies in the chronological and probabilistic separation between the presence
(or absence) of a mutation and the corresponding presence (or absence) of a physical
manifestation of what the mutation indicates (disease, ancestral information, hereditary
consequences, etc.). The rhetorical problem for providers of DTC genetic services thus
lies in making visible the chronological and probabilistic separation between the
presence (or absence) of a mutation in the sequenced DNA strands and the presence (or
absence) of a physical manifestation of what the mutation indicates.
The next section explores how the market creates a language that tries to
respond to this rhetorical problem. In the case of hemochromatosis, this language must
act as a heuristic for communicating the mathematically complex probabilities that
govern how different HFE mutations are inherited and the probabilities that determine
whether the disease will be present in a given individual. Social complexities build onto
the mathematical ones: both the presence and absence of mutations in the HFE gene put
at stake difficult social questions that need to be resolved by individuals and families.
Because genetic conditions rarely are isolated, blood relatives and potential future
children are or could be affected by the individual client's test results. In the case of
101
genetic ancestry tracking, Y-chromosome and mtDNA mark different ancestral lines,
and ancestral origins can give clues about conditions (both health-related and familial)
that go beyond the expectations of clients.
21
Thus, the next section explores how the
symbolic framing of the complex choices that are enabled by genes and genetic
technology provides heuristic, linguistic resources for clients to make sense of their use
of genetic technology and the test results they receive. As the first and, often, sole texts
to frame the complexities of genetics in relation to the social practices of clients, the
texts designed by and for the market set expectations about test outcomes, potential
consequences both for the client and their family, and new responsibilities that may
arise from specific results.
Communicating Genetic Complexity
The complexities that need to be communicated throughout the three steps of a
DTC genetics practice create a difficult problematic. Present and future choices about
taking a test and about responding to test results are influenced by a range of factors.
Most clients of DTC genetic services do not have expert knowledge of genetics and the
DTC business model rests on the possibility of anonymous testing outside the
institutional constraints of healthcare or insurance practices. What a gene is and what
genetic sequencing technology can predict -- what genes are, what they can tell us about
ourselves, and how they can be read -- thus lacks an agreed-upon set of meanings
21.
For more on the effects that missed expectations can have on clients, see Chapter IV.
102
shared by all or most potential clients. Instead, in the field of DTC genetics, genes and
genetic technology are empty signifiers, at best unknown and at worst misunderstood by
the lay customer.
The communicative steps outlined in the previous section encompass the texts
used to communicate what genes are and what they mean to the specific customer.
These texts thus help integrate genetic biotechnology into the existing social and
individual practices of lay clients. This is not to say that genes are brought into
existence by communicative acts. Instead, as Bruno Latour has shown, what takes place
is the integration of an external, recalcitrant reality into the existing lifeworld of clients,
their family, or a larger collective through meaning-making mechanisms that make
sense of this external reality.
22
Genes are not brought into existence by the
communicative act (as a radically relativistic view might assert); instead, genes are
brought into the existence of particular individuals within the constraints of a particular
situation. In other words, communicative practices provide individuals who are
presented with an exigence that requires or suggests the use of genetic technology
(unexplained symptoms, family planning, new hereditary information, or simple
curiosity) with a space within which to integrate this previously unknown technology
and scientific knowledge into their lives. How such a space is shaped through the
market language is the focus of the following sections.
22.
Latour, Politics of Nature.
103
The Texts Behind Hemochromatosis and Ancestry Testing
This section explores how a market language of DTC genetics communicates the
complexities of genetics. The texts are drawn from the two tests discussed earlier as
representative of the larger types of DTC genetic services on the market:
hemochromatosis and ancestry tracking. The first test is sold by DNA Direct, one of the
largest, most active, and most widely recognized
23
providers of health-related DTC
genetic services. The second is sold by IBM/National Geographic. IBM and National
Geographic's joint Genographic Project was among the first provider to offer tracking
ancestral heritage and migration patterns through the Y-chromosome and mtDNA. The
project is unique in that its primary selling point is not limited to individual ancestry
tracking. Instead, it advertises itself as a "landmark study of the human journey,"
24

inviting individuals to participate in a study run by aforementioned organizations,
genetic scientist Spencer Wells, and the Waitt Family Foundation.
The informational step. The texts through which both of these companies
communicate with their clients follow the communicative steps outlined above. For the
informational step, I consulted the websites of both providers at
http://www.dnadirect.com for the hemochromatosis test and
23.
As of April 2008, Lexis-Nexis shows 94 hits for DNA Direct in major U.S. newspapers and
wires (since September 2003, when DNA Direct was incorporated), compared to 83 for Genelex
(for the same time span), 30 for GeneLink, or 24 for CyGene.
24.
The Genographic Project, "About the Project," IBM/National Geographic, 2007, https:/
/www3.nationalgeographic.com/genographic/about.html (accessed June 21, 2007, archived by
WebCite at http://www.webcitation.org/5Pli6g0fs).
104
https://www3.nationalgeographic.com/genographic for the Genographic Project. Both
websites provide information about the tests people can purchase, including descriptions
of health-related genetics and ancestral genetics, respectively, the benefits and risks of
taking a genetic test, potential legal issues and affirmations of privacy and anonymity
and, maybe most importantly, explanations of why someone should purchase a test.
Sample results also include explanations of hypothetical test results and give potential
clients a sense of what the technology can and cannot do.
The transactional step. I then purchased the hemochromatosis test from DNA
Direct and the ancestry tracking kit from IBM/National Geographic and gathered the
informed consent forms and other texts that are sent to customers during the
transactional step. Generally, the purchase step requires clients to go through a few
questions before completing the purchase, either about their and their family's health
history or their ethnicity. Then, a package is sent to the customer containing the testing
instruments (a cotton swab, specimen envelope, etc.) and legal forms. Some of these
forms are available (as samples) on the websites of the companies, albeit in less
complete and less custom-tailored form than when the test is purchased. The most
critical text in this step is the informed consent form. As a legal contract, the informed
consent form must be able to communicate the general risks of DTC genetics concisely
and in a manner that is understandable to lay audiences. This is particularly difficult for
health-related genetics, where the immediate risk is more direct (see Chapter IV), the
105
science behind the tests rather complex, and thus the potential for misunderstanding
much greater.
The evaluative step. Third, I went through the process of using the two tests to
take samples of my DNA. This step gave me access to the texts that convey the full
results of a test, including detailed descriptions and explanations of the results. This
third body of texts is made accessible to the client online (in a private, password
protected environment) a couple of weeks after sending the DNA samples to the
laboratory address provided in the initial mailing. For the hemochromatosis test, the test
results came in the form of a 30-page report tailored to my genetic sample. The report is
divided into nine chapters
25
dealing with and explaining issues ranging from the
immediate results to the probability of risk from genetic mutations, the presence of non-
genetic environmental risks, the implications for family members, and how to talk to
family members, healthcare providers, and insurance companies about the results.
Sample results are available on the companies' websites but, unlike the results of the
actual tests analyzed here, these public samples are incomplete and not tailored to a
specific test taker. For the ancestry test, results are revealed across multiple web pages
linked to each other within a password protected environment. These pages explain how
and why genetic mutations can indicate ancestral locations and migration patterns and
25.
In sequence, these chapters are entitled "Your Test Results," "Your Genetic Risks," "Your
Lifestyle and Other Risks," "Understanding 'Risk,'" "Your Test Results and Your Family,"
"Talking With Your Family," "Working With Your Health Care Team," "Putting It All
Together: Practical Steps," and "Resources."
106
show through text and images what the specific mutations found in the customer's
sample say about that customer's heritage: which tribes and sub-tribes (defined by their
haplogroups) their ancestors belonged to, what characterized those tribes and their
geographical locations, and where they migrated over different time periods. For both
health and non-health services, these test results reports are the last mandatory step of
the communicative interaction between customer and provider (although in some cases,
for example with DNA Direct, clients can ask to speak via telephone with a genetic
counselor), they are the only texts to include the actual genetic information about the
client and thus provide the most critical step for communicating the complexities and
potential consequences of a test and its results.
Within these texts, I examined the conventions of communicative practice
employed to relate the complexities of genetics to the preexisting social and individual
lives of clients and how the language used accounts for the contingent nature of choices
opened by a genetic test. In other words, I looked for how the market language opens a
space in which uncertainty and probability can be retained, the future remains open and
malleable, and clients are left with choices they can make in response to their test
results. While the language of the texts differs throughout the market discourse, there
are recurring rhetorical patterns that frame the gene-as-object in relation to the
individual test taker. To translate the complexities of genetic science against the
common pre- and misconceptions of the gene-as-object as biologically determining or
underdetermined, providers of health-related DTC genetic services frame the nature of
107
genes through a set of rhetorical tropes and practices that disassociate the presence of a
genetic mutation from the physical manifestation, consequence, or knowledge gained
from that mutation (be it a disease or ancestral information). The section that follows
outlines the five most prevalent rhetorical strategies used to do this in these texts.
The texts provide a range of examples for where and how these texts made use
of rhetorical strategies to convey a sense of uncertainty, contingency, and ambiguity
that undercuts the prevalent languages of genetic determinism. This sense of
contingency structures a more probabilistic way of understanding test results and
assessing risks. The rhetorical strategies flip the dynamics of determinism: where the
popular Dawkinsian understanding of the gene-as-object would situate agency with the
gene, the heuristic efforts of DTC genetics providers reverse the relation between the
gene and individual test taker. One tool in creating such a heuristic is the use of
synecdoche in how providers of health-related DTC genetic tests report test results to
clients.
Synecdoche for Communicating Health-Related Test Results
Synecdoche is used to introduce a sense of contingency into an understanding of
genes and genetic technology. Of the recurring rhetorical structures that help relate the
complexities of genetics to existing social practice and account for the necessary
contingency and the possibility of choice clients need to deal with in response to a test,
synecdoche is among the most prevalent ones. The Encyclopedia of Rhetoric defines
108
synecdoche as a trope that "signifies a relationship of the particular and the general.
Like metonymy, it is constituted by a substitution of contiguities. Synechdoche presents
either particular things instead of a whole, or a whole instead of something particular."
26
A synecdoche thus functions enthymematically: it is inclusive insofar as the meaning of
the explicit language-term that signifies the synecdoche ("mouths to feed") relies on a
shared understanding by the audience of the larger meaning to which it refers ("hungry
children"). The enthymematic understanding of synecdochical meaning creates a
contingent language (facts are not explicitly stated) that affirms the audience's agency:
the synecdoche's tacit, implicit meaning involves the audience (here, the individual
clients) in the meaning-making process of reading a text and of translating its language.
The presence of synecdoche as means of communicating about genetic
complexity is exemplified in the test results of the health-related hemochromatosis test.
In non-genetic medical testing, the central outcome of a medical test generally is
communicated through positive or negative labels. These labels generally construct a
descriptive binary. Terms like positive or negative draw from the institutional
vocabularies of medicine and clinical healthcare to set up a binary either-or situation in
which the existence of a disease-causing agent is either proven or disproved. But
positive and negative resonate more widely in the discourses of traditional healthcare
and medicine. They indicate not only the presence of a disease-causing agent (the
signifier insofar as most medical diagnostic techniques only can point at an outside
26.
Thomas O. Sloane, Encyclopedia of Rhetoric (Oxford: Oxford University Press, 2001), 763.
109
agent like a bacterium, virus, or cancerous growth) but further signify the presence of
the disease itself with all its personal and interpersonal consequences. Positive and
negative in a medical context thus collapse the presence of an external disease-causing
agent or indicator of a disease with the presence or manifestation of the disease itself.
They stand not only for the presence or absence of a disease-causing agent but also for a
resulting near-certainty or certainty of carrying (or not carrying) the disease. In other
words, positive and negative in medical discourse signal the presence of a disease-
causing agent, but also indicate the presence of the disease with all its financial and
social ramifications for the individual.
Despite the difference between genetic and non-genetic testing, this vocabulary
often is retained in the communicative practices of DTC genetics providers. The
institutional vocabulary of clinical medicine remains important to how these providers
communicate with their patients. Established vocabularies create symbolic piety
27

between the practices of DTC genetics and well-regarded practices in a medicine and
healthcare: using the vocabulary of medicine and healthcare, providers of DTC genetic
services can cloak themselves symbolically in the guise of established medical practice.
Because of the differences between traditional medical diagnosis and genetic diagnosis,
however, mirroring the vocabulary of medical practice distorts the material results of a
genetic test. The use of positive and negative in itself is not incorrect in the context of
health-related DTC genetics, as these terms communicate, in a binary and descriptive
27.
Burke, Attitudes Toward History.
110
way, the presence or absence of specific mutations.
28
But where testing for diseases
within a non-genetic context would look for bacteria or viruses in the bloodstream
29
that
serve as certain indicators for the presence of disease itself, genetic material cannot
have the same diagnostic function. Rather, it reveals mutations that signal susceptibility
to a disease, but never the actual physical presence of manifestation of that disease.
Given the critical discrepancies between medical non-genetic diagnosis and genetic
diagnosis, a language for communicating test results must emphasize the tenuous,
probable link between disease and mutation. The provider's communication must be
able to convey, for example, that a positive colon cancer test only is positive for the
presence of a mutations but does not indicate the presence of cancer. Despite the initial
resonance that positive may have with the patient, the language of a genetic test
outcome thus must indicate that the presence of genetic mutations associated with colon
cancer must not necessarily indicate the inevitable presence of the cancer itself.
The use of positive and negative in the hemochromatosis test result report
exemplifies this concern. Used in the evaluative step of the hemochromatosis genetic
28.
A common misconception in applied genetics is that genetic tests look for the presence of
absence of genes. What they instead look for are mutations in a specific gene. This
misconception often occurs with genetic tests for breast cancer, where the presence of the
BRCA gene is frequently (and falsely) perceived as correspondent with the presence or eventual
presence of breast cancer. In fact, it is changes in the BRCA gene that predispose to the cancer,
not the presence of the gene itself.
29.
Despite the many differences here, traditional diagnostic testing through blood samples and
genetic test results share similar ontological perceptions. While genes have long been seen as
building blocks not only of our biological but also of our social self, blood (as Kenneth Burke
describes in his "Rhetoric of Hitler's Battle") is similarly seen as a constituent part of not only
our biological, but also social makeup.
111
test, the test result report qualifies the positive and negative terms. The first few
paragraphs of the 30-page report frame the meaning of these central terms as follows:
These genetic changes [the C282Y, H63D, and S65C mutations] are found in 85
to 90 percent of people with hereditary hemochromatosis. This means that if we
gave this test to 100 people with hereditary hemochromatosis, 10 to 15 people
would have a negative test result. They would test negative because there are
other, less common genetic changes that may be involved in developing iron
overload for which testing is not currently available.
30
The paragraph emphasizes the probabilistic aspect of genes by shifting the underlying
meaning of negative. While negative in a medical context indicates both the absence of
a disease-causing agent and of the disease itself, negative in the context of DTC
genetics here separates the presence of an abnormal object (the mutation) from the
presence of a disease. Negative in this genetic context functions not as a descriptive
term but as a synecdoche: it explicitly references the presence of the abnormal object
(the mutation) but remains implicit on the relationship between the presence of the
mutation and the underlying disease. Instead, the link is implied within the frame of a
contingent future outcome that, while likely, is uncertain.
This move of the positive and negative labels from descriptive to synecdochical
terms separates the presence of disease-causing agent from the presence of disease. The
move is made more understandable through a personification and inversion of numbers.
Rather than relying on the mathematical "percent," the text substitutes the mathematical
term by replacing the abstract "percent" with the concrete "people." This allows the
30.
DNA Direct, "Hemochromatosis Report," mailed item to author, 2007.
112
client to more readily identify him- or herself with the improbable but not impossible
chance of having hemochromatosis without carrying one of the three sequenced
underlying genetic mutations. At the same time, the paragraph mirrors the initial
statistic: the "85 to 90 percent" is explained by its inverse ("10 to 15 people"). The
inversion emphasizes not the norm (the 85-90 percent) but the exception (the 10 to 15
people) to highlight the probability of an outcome that differs from what the physical
presence or absence of a mutation would indicate in most cases. The paragraph thus
qualifies negative to be an indicator rather than a marker: a negative result means that
there is a high likelihood of not getting hemochromatosis, but no certainty. The
medically certain negative is refocused from an absolute (marking the presence or
absence of a disease) to a probable (indicating the likelihood of a disease).
The same shift of positive and negative from descriptive label to a synecdochical
trope takes place when the familial and collective implications of negative test results
are explained. One of the two central complexities of genetics mentioned earlier is that
genetic test results carry direct, biological consequences not only for the individual but
also for his or her blood relatives. The texts that communicate the results are sensitive to
the social dimension of genetic testing. Negative results, the test results state, indeed
have implications for family members. Even though the client "may not have any of the
three most common HFE mutations involved in hemochromatosis" and "there is no
113
indication that your other relatives are at any greater risk than the general population,"
31

the report states that while children cannot inherit mutations from the client's side, they
could do so through the client's spouse: "It is important to recognize that HFE mutations
are relatively common and most people who have them are not aware that they have the
genetic risk."
32
Here, too, the absolute negative is refocused through a number of verbal
qualifiers ("relatively common," "the three most common," "indication," "greater risk
than the general population") to maintain a sense of probability: even though results are
negative, the possibility for having hemochromatosis still exist.
Moving the terms positive and negative from descriptive label to synecdochical
trope can go as far as renaming the terms themselves. DTC genetics company CyGene
alters the names of terms that communicate test results. It replaces positive and negative
with "risk level."
33
Instead of binary terms like positive or negative, the renaming of
these labels reframes the consequences of genetic test results as gradient rather than
binary. The gradient nature of the new terms helps shift the explanatory language
toward a more contingent ground.
The presence of synecdoche in the hemochromatosis report shapes a language
that shifts the nature of genes away from framing genes as predictive signifiers of
31.
Ibid.
32.
Ibid.
33.
CyGene Direct, "Sample Genetic Test," 2006, https://cygenedirect.com/genetic-testing/
genetic-testing-sample-test2.html (accessed June 2, 2008, archived by WebCite at http:/
/www.webcitation.org/5YHYuOp2C).
114
certain future outcomes. Instead, the language here reflects expectations that are less
certain and allow genes to merely indicate the possibility of a future outcome rather
than predict it with certainty. Framing positive and negative as synecdoche shifts the
terms from an institutional understanding where they carry a sense of certainty to a new
understanding that allows for the possibility of uncertainty. This is not to say, however,
that these shifts in synecdochical meaning reflect language choices that would make the
presence (or absence) of genetic mutations negligible. Synecdoche may make the link
between the presence of a mutation and a disease ambiguous and implied. But the
causal link nonetheless remains implicit and commonly understood. Synecdoche relies
on shared, assumed understandings of how the explicit language-term relates to the
whole that it stands for. While the examples above qualify the shared understanding of
positive and negative by weakening the causal connection between mutation and
disease, and while the synecdoche as a linguistic trope by definition involves a certain
degree of contingency, it cannot deny or obscure that the shared understanding for
positive and negative closely links the terms to the presence or absence of a disease.
The sense of contingency introduced through synecdoche into the language of
the report is characteristic of the market discourse's heuristic effort to undercut genetic
determinism and to translate the complexities of genetics into lay terms. But the use of
synecdoche (here exemplified in the hemochromatosis test results) to communicate the
critical difference between mutation and disease and thus the complex, contingent
choices of genetic test results partakes of another rhetorical strategy: comic framing.
115
Comic Framing in Informed Consent Protocols
Whether through verbal qualifiers or through renaming, refocusing the labels
that communicate medical test outcomes toward something more contingent and
ambiguous becomes part of a larger rhetorical strategy that positions the biological
materiality of a gene in what Kenneth Burke calls a comic frame. Burke's comic frame
is instrumental in the construction of what he termed a "poetic perspective." The comic
frame can maintain the recalcitrance of scientific fact (in this case, the presence or
absence of sequenced genetic markers) but challenges appeals to scientific factuality as
reasons for denying the possibility of choice and probability. The resulting poetic
perspective creates a rationalization for the possibility of choice around, or maybe in
spite of, the permanence of scientific fact. In Permanence and Change, Burke lays the
groundwork for this "corrective rationalization" that "must certainly move in the
direction of the anthropomorphic or humanistic or poetic, since this is the aspect of
culture which the scientific criteria, with their emphasis upon dominance rather than
upon inducement, have tended to eliminate or minimize."
34
This corrective becomes
predicated on "a sharp distinction between the ethical and the logical," where the latter's
emphasis on "mechanistic notions of causality"
35
historically has supplanted the former.
Where natural law, factual data, and scientific method "categorically [make] the
34.
Burke, Permanence and Change, 65.
35.
Ibid, 171.
116
discovery of purpose impossible,"
36
the ethical emphasis on teleological notions of
causality -- on purpose -- restores the possibility of making choices and affecting a
future that, despite the presence of scientific fact, remains contingent and malleable.
Indeed, emphasis on contingency and uncertainty is critical in restoring a sense of
choice, as according to Burke it is through "speculation" and "linguistic skepticism"
37

that we can depart from the restrictions of scientific rationalization.
Maybe the most striking example of comic framing appears in the informed
consent form of the hemochromatosis test. The informed consent form communicates
information about the nature of genes and the potential of genetic technology during the
transaction between client and provider. At first glance, the language in the informed
consent form seems more appropriate to a tragic frame and supports, not undercuts, a
deterministic understanding of DNA. It states: "DNA is the genetic code that passes
hereditary information from generation to generation. The information stored in our
DNA instructs our body to grow, develop, and function over time."
38
The vocabulary
here -- "genetic code," "instructs" -- falls more closely into a Burkean tragic perspective
in line with a deterministically distorted perception of genes and genetics. The same is
true for the term mutation. Mutation carries a distinct sense of inevitability: its
36.
Ibid.
37.
Kenneth Burke, A Grammar of Motives (Berkeley and Los Angeles: University of
California Press, 1969), 442-43.
38.
DNA Direct, "Informed Consent & Customer Agreement," mailed item to author, 2007.
117
etymology is rooted in the passivity of a past participle (its roots are closer to mutatus
than to the active infinitive mutare), and its meaning in a genetic context serves as a
catch-all for insertions, deletions, amplifications, translocations, inversions, and other
non-voluntary facets of genetic change. Being told that they have a "genetic mutation"
found in a sequenced chromosome could linguistically shape a perspective and belief
for clients in which they have little agency to make choices that would deal with that
mutation. As was true with positive and negative, the term draws from the institutional
vocabulary of laboratory science, clinical medicine, and regulated healthcare practice.
This symbolically shaped deterministic understanding of genes quickly yields to
a less biologically determined version, however. The language of the informed consent
form communicates the complexity behind a concept like the nucleotides of DNA
through an analogy:
Our genetic code (DNA) is the set of instructions that tells our bodies how to
develop and function. DNA is like a string of beads in which each bead
represents a letter of the code. Genes are stretches of DNA that represent the
instructions for a specific protein or function.
This passage makes an analogy between the nucleotide pairs that compose the human
genome and "beads" or "letters" that constitute through enthymematic implication the
"word"
39
in its entirety: if the individual nucleotide base pairs are like letters, then the
entirety of the human genome is a word that easily can be read and made sense of.
Terms like letter or word connote an understanding of genes that is more malleable and
39.
Ibid.
118
controllable than code or instruction. They exist in the domain of the familiar, where the
individual client retains the knowledge and agency to control "letters" and "words."
Code and instruction, on the other hand, connote prescriptive rather than descriptive
meanings of gene and genome: as a "set of instructions that tells our bodies how to
develop,"
40
code shapes an understanding of DNA that explicitly removes agency from
the individual. But what ultimately flips the deterministic dynamic of code is another
analogy: the comparison of mutation to the term mistake.
The informed consent form undercuts a deterministic perspective by reframing
the term mutation with mistake. "We all have mistakes (mutations) in our DNA,"
41
the
forms says, trying to explain and translate what the term "mutation" means. The same
switch from mutation to mistake takes place on the test results report, where the
following text seeks to create an understanding of the nature of genes and of genetic
technology: "If there is a mistake or change in one of the "beads" or letters, the
instructions can change. When this change causes a disease, it is called a mutation.
42

This passage, like the one before, juxtaposes code and instruction to mistake, beads, and
letters, using the latter terms to make sense of the former.
These terms are not unique to only one type of test, nor are they unique to the
informed consent protocols of health-related DTC genetic tests. On both their public
40.
Ibid.
41.
Ibid.
42.
DNA Direct, "Hemochromatosis Report."
119
website and their test results page, the Genographic Project explains the meaning behind
the mutations in a specific DNA sequence that allow for distinguishing between
different ancestral origins as follows:
[...] there are parts of the genome that are passed down unshuffled from parent to
child. In these segments the genetic code is varied only through occasional
mutations--random spelling mistakes in the long sequence of letters that make
up our DNA.
43
The same language that was used in the transactional step of health-related test results
appears here in the informational step of a non-health test. Mutations are reframed as
mistakes and an analogy between nucleotide pairs of a genetic sequence and the more
familiar words and letters facilitates an understanding of the concept of nucleotide base
pairs in a genome.
Thus, in both the informed consent form of the hemochromatosis test and the
informational and evaluative sections of the Genographic Project's website, the efforts
to explain terms like code symbolically shift the heuristic vocabulary from an
institutional space of laboratory science, clinical medicine, and regulated healthcare to a
more personal and familiar space. Mistakes, beads, letters, and words are terms that
operate within the familiar domain of everyday practice: they facilitate an understanding
and integration of this new, complex genetic technology in the context of existing lives
and practices. This is nowhere as apparent as in the move from mutation to mistake in
43.
The Genographic Project, "Genetic Signposts," IBM/National Geographic, 2007, https:/
/www3.nationalgeographic.com/genographic/signposts.html (accessed February 19, 2008,
archived by WebCite at http://www.webcitation.org/5VjSiP8Dg).
120
the informed consent protocol of the hemochromatosis test. The reframing of mutation
gets at the distinction Kenneth Burke makes between different frames of reading and
accepting the world around us.
44
As Burke shows, the individual in a tragic frame is
predestined through a tragic flaw and lacks the agency to shape future outcomes; the
individual in a comic frame, on the other hand, faces the burden and possibility of
correcting errors and mistakes. Mistake, unlike flaw, defines an event that is both
temporally and causally limited. Mistakes, in other words, can be overcome. They allow
the individual to retain agency for shaping future outcomes: within a scientific mode of
rationalization, we see the universe as "having been created" instead of "being created,"
which positions individuals as an audience merely responding to events in the world
rather than actors shaping the world.
45
When genetic code is broken into letters and (by
implication) words, and when an error in one of these letters is framed as a mistake, a
Burkean comic frame flips this dynamic and restores agency to the individual.
The term mistake, however well it may undercut a deterministic perception of
genetic mutations, does not risk translating the gene-as-object into an underdetermined
perspective. As part of the informed consent form's language, the term mistake not only
opens up a contingent space and, with it, the possibility for choice but also retains a
perspective where the necessary uncertainty of a contingent choice remains structured
44.
And if frames are attitudes taken toward others, as Burke often asserts, this framing will
prove relevant for discussions of identity (see Chapter IV).
45.
Burke, Permanence and Change, 218.
121
and choice remains possible. Where strong underdeterminism would foreground
uncertainty that makes it impossible to predict a future outcome and would so lead to a
loss of agency, mistake shows the necessity of trying to control a future outcome. Errors
in a Burkean comic frame may be fixable, but they are nonetheless errors: if no attempt
is made to fix them, they eventually will become harmful. The comic frame, in other
words, makes possible choice, action, and agency, but it does not remove responsibility
from the agent. Contingency is tempered: too much uncertainty leads to erratic decision-
making and prudent choices can take place only when uncertainty is structured enough
to enable a number of well-defined outcomes.
The creation of a poetic rationalization effectively severs the causal link between
the results of genetic sequencing (the specific mutation) and the disease for which the
test sequences. Since much of the language of genetic determinism relies on such a
causal link, comic framing becomes a successful rhetorical strategy for undercutting
determinism. In the example here, the use of the term mistake disassociates sequenced
results from future certainty by shifting the outcome of a genetic test from certain
permanence into a Burkean comic frame, where the future is contingent and flexible and
choices are possible. Such dissociation through a comic frame carries a unique,
diachronic dimension.
122
Diachronicity and Genetic Risk
The move to symbolically disassociate mutation from disease frequently
involves a diachronic dimension. Traces of temporality appear in the use of the term
mistake, and there is a clear temporal distance between a "mistake" in the genetic
"letters" and the possible onset of a disease.
46
In a similar dissociative move, the
hemochromatosis test's informed consent form states: "The purpose of DNA testing is to
determine whether I, and/or members of my family, are affected with or carry the DNA
mutation(s) associated with [my emphasis] the condition or disease that is being tested."
To argue that a term like to associate at the same time also disassociates may seem
warrantless but, as Burke has argued, identification cannot take place without division.
47
Associate thus separates the objects associated with one another into two distinct
entities that are joined but are not linked by a necessary and irresolvable connection.
One object, in other words, cannot be seen as the cause of the other object; instead, each
46.
This concept of diachronicity as a rhetorical device can be traced to Aristotle. His division
of rhetorical types into deliberative, forensic, and epideictic not only differentiates between the
kinds of events, situations, and audiences to which a rhetorical text responds but also locates
these events, situations, and audiences on a temporal axis. It presumes that speeches that fall
into the category of the deliberative, forensic, or epideictic are also situated on a temporal axis
(future, past, and present, respectively). This temporal axis in turn puts all rhetorical acts into a
diachronic context. A eulogy thus is not only a rhetorical act in the category of the epideictic
because it deals with an event that reaffirms the values of a specific culture, family, or group. It
is also within the category of the epideictic because it uniquely and explicitly situates the event
in the present, and in so doing provides a context and a space for engaging with the past (the life
of the person mourned) and the future (how the loss will affect the future) in terms of a present
moment and context.
47.
Kenneth Burke, A Rhetoric of Motives (Berkeley and Los Angeles: University of California
Press, 1969).
123
object is indicative of the presence of the other object. The connection between genetic
mutation and the presence of a disease thus is predictive rather than prescriptive.
Dissociation through temporality appears throughout the texts analyzed, most
frequently in places where the texts need to make sense of the concept of genetic risk: in
the hemochromatosis test results report. Under the heading of "Competing Risks May
Change Over Time," the report notes: "It is important to remember that the risk factors
you may have for certain diseases will change over time."
48
This segues into a report on
the implications of test results for family members and a discussion of hereditary risk.
Heredity falls into the categories of both mathematical and social complexity. It is
among the more difficult genetic concepts to explain to lay clients, yet also one of the
most important ones for clients to understand. Creating a language that can explain
heredity thus represents a complex heuristic undertaking.
49
Woven into the questions of
genetic past, future, and present that frame discussions about heredity are complex
mathematical probabilities: the ethical difficulty of deciding whether to have a child
even though one of two parents has too many repetitions of a CAG triplet on the tip of
48.
DNA Direct, "Hemochromatosis Report."
49.
Heredity spans across all three diachronic directions and puts at risk the central qualities of
each: in Aristotelian terms, heredity involves a forensic dimension (how genes are inherited
from parents, and how illness symptoms exhibited by parents, grandparents, and more distant
ancestors might point toward the presence of a genetic mutation), a deliberative dimension
(dealing with how existing or future children would inherit the genetic mutations of their
parents), and as a result of these two an epideictic dimension that puts at stake questions of
blame (regarding inheriting diseases from prior relatives) and questions of ethical choice (about
whether the possibility of passing on a mutation to a child warrants either not having a child, or
warrants the risk of having a child and exposing it to the possibility of carrying the mutation).
124
chromosome #4 (indicative of Huntington's disease) rests closely on understanding both
the probability of children inheriting the genetic defect and the probability of children
then developing the disease for which the mutation predisposes. Mutations of the HFE
gene may be less strongly predictive of hemochromatosis than the CAG repetitions are
for Huntington's disease. But the probabilities that govern hereditary hemochromatosis
are among the more complex ones.
To create an understanding of how a specific HFE mutation indicates a probable
but not certain likelihood of carrying the disease, the hemochromatosis test result report
employs what has become an industry-standard graphical depiction of a family tree that
shows through color-coding how genes are inherited (in autosomal-dominant,
autosomal-recessive, X-linked, mitochondrial, or other patterns). The genetic status of
parents is indicated through colors that allow for an intuitive distinction of dominant
and recessive hereditary patterns: recessive patterns allow for genetic mutations to be
depicted as only affecting one part (50%) of the individual and, thus, giving children an
equal chance (50%) of not inheriting the mutation from that parent. If both parents carry
only one copy of a mutation, the child has a 25% chance of inheriting both mutations.
However, limits to the graphics-based hermeneutic model are evident. The visual is
limited to depicting a binary between presence and absence of a mutation. It cannot
distinguish between the presence of a mutation and the possibility of the presence of a
disease. Even if the aforementioned child falls within the 25% that inherit both
mutations, it remains uncertain whether the child will develop the disease; if the child
125
inherits only one copy of the muation (for which there is a 50% chance), he or she is a
heterozygous carrier who will not be affected by hereditary hemochromatosis but still
can pass that gene on to his or her children.
Graphical depictions of risks and probabilities extend additional heuristic lenses
to communicate the meaning of this complex, tenuous, and contingent link between the
presence of a mutation and the presence of a disease. In the hemochromatosis test result
report, a section entitled "Understanding 'Risk'" is designed to teach clients how to read
risk probabilities and determine their own personal risk of genetic disease. Here, a
number of visual charts -- a pie chart, a so-called "wall of balls" chart, vertical bars, and
a chart with 100 small human forms of which only two are shown to be "dying of
disease" and eight as "developing disease" -- graphically illustrate, first, that a mutation
is not necessarily linked to death and, second, how small is the correlation between
testing positive for a genetic mutation and later developing that disease is.
50
Yet, even graphical depictions remain limited when it comes to shaping an
understanding about the precise probability of risk to which an offspring can be exposed
if one or both parents carry a mutation for hemochromatosis. The difficulty rests in the
absence of symptoms. If a parent carries only one copy of a mutation, he or she may
show no symptoms. If the child in turn has hemochromatosis, it appears as if the disease
would "skip" a generation. The test results report is aware of this problem of perception
and asks: "Can hereditary hemochromatosis skip a generation?" This view is
50.
Ibid.
126
problematic insofar as it imbues genes with agency and individuals with a sense of
helplessness: if the mutation in question can skip a generation without manifesting any
easily recognizable symptoms, then how can individual clients prevent passing on the
mutation or calculate the probability of their offspring carrying the mutation?
51
The test
results accurately correct the impression that mutations indicative of hemochromatosis
cannot "skip" a generation. Instead, "hereditary hemochromatosis can 'reappear,'" the
report states, out of nowhere in children even if symptoms of hemochromatosis did not
manifest themselves in either of the parents (either because parents were carriers but did
not develop the disease or because a non-carrier married someone who was a carrier of
an HFE mutation without their knowledge).
The terms skip and reappear both situate the genetic mutation on a temporal axis
in a way that illustrates the opaque hereditary progression of the disease and highlights
that an absence of symptoms need not indicate absence of the mutations that may,
eventually, cause or predispose to the disease. The language here injects contingency
into the evaluation of hereditary risk and indicates that to evaluate genetic risk, a client
cannot necessarily rely on the presence of hemochromatosis symptoms but instead must
51.
"To pass on" stands in contrast to an earlier depiction of hereditariness, where the genetic
mutations for hereditary hemochromatosis were shown to "run" in families. "Pass on" is
different in where it locates agency: while a gene that "runs" in the family assumes its own
agency, a gene that is "passed on" is shown to be passive, and the individual passing on the gene
assumes a certain level of agency. Despite this difference, both verbs function similarly: as
heuristic tools, they signal that a genetic mutation, once present, will move down to the next
generation. More importantly, both explain that even though no symptoms of hemochromatosis
might be present in an individual, that individual might still carry one of the HFE mutations,
and they explain that the mutation might move unseen between generations -- again severing the
necessity of a link between mutation and disease.
127
see whether "there are clues in the family history that may help identify" if parents who
never exhibited full symptoms may have been carriers. This temporal framing (here
directed toward a historical past through the terminology of the forensic) shapes a
language where the presence of the disease is separated from the presence of the
underlying genetic mutation. This language does not deny the material, biological
reality of genes and genetic mutations (and the possibility that mutations will develop
into diseases). Nor does it deny the use of genetic technology as means of reading the
presence of a genetic mutation. But it does frame the predictive capacity of the
technology and the link between mutation and disease as inherently contingent and
tenuous.
In this context, diachronicity undercuts genetic determinism. But the separation
between genetic mutation and disease is not absolute. On the contrary, the last example
in particular shows that a temporal separation between genetic mutation and disease not
only separates but also connects: the two may be distant, but the linguistic markers that
position them alongside a temporal axis also represent a common ground -- the temporal
axis -- on which they are similar. The rhetorical use of a temporal axis on which events
and objects such as genetic mutations and the onset of a disease are located thus not
only undercuts genetic determinism but also preempts underdeterministic readings of
test results. What is made clear by the use of temporality (and, again, Burke's concepts
of identification and division prove instructive here) is that the presence of a genetic
mutation does not indicate the presence of a disease but does signal the possible onset of
128
that disease in the future. The linguistic creation of a chronological dimension thus
changes perceptions of genes from indicating something certain to the possibility of
outcomes that are different than what a gene might indicate.
This use of temporality is not unique in creating this language of disassociating
the presence of a mutation from the presence of an illness. Metaphors used in these texts
often perform a similar function; thus, the next section explores the role metaphors play
in the communicative practices employed the market actors.
Metaphors for Shaping Ancestral Narratives
Metaphors are tropes that make sense of an object through the lens of another
object. The Greek root of the term -- meta roughly translates to "beyond" and pherein to
the verb "to carry" -- indicate that the meaning of one object is used to give (literally,
"carry over") meaning to another. I.A. Richards explains metaphors in terms of tenor
and vehicle, where the meaning of one object becomes the vehicle of making sense of
another (the tenor, frequently also the "focus").
52
George Lakoff and Mark Johnson use
the more widely known terms "target domain" and "source domain" to describe how
metaphors can make sense of the unknown.
53
As is true for all tropes, however,
metaphors do not translate one object through another in a neutral, unaltered way.
52.
I. A Richards, The Philosophy of Rhetoric (New York: Oxford University Press, 1936).
53.
George Lakoff and Mark Johnson, Philosophy in the Flesh: The Embodied Mind and its
Challenge to Western Thought (New York: Basic Books, 1999).
129
Instead, metaphors can "turn" (Greek: tropos) the object they translate by injecting
common connotative associations of the vehicle or source domain into the tenor or
target domain.
The use of metaphors in the discourse of genetics has been studied in great
depth. Celeste Condit et al. argue that master metaphors used to describe (and make
sense of) the physical reality of genes frequently are deterministic in nature. Metaphors
like "blueprint" create an understanding where genes are seen as a firm and immutable
foundation of the self. Shifting these dominant metaphors to less deterministic ones like
"recipe" is critical but so far, they argue, has failed.
54
Others agree that metaphors play a
central role in the lay public's understanding of genes.
55
Metaphors are among the most
popular rhetorical strategies used to communicate the complex, contingent choices that
are enabled by genes and genetics into choices that are manageable by lay audiences. As
Chapter I has shown, frequently these translations use the vehicle or source domain to
impose deterministic understandings onto the material reality of genes as objects.
The metaphors used in the market discourse of DTC genetics seek the opposite:
to undercut determinism. In the texts of the health-related genetics test, one metaphor
stands out: the puzzle metaphor. The hemochromatosis test report explains the
importance of considering environmental factors in making health-related decisions in
response to a genetic test by noting that "genes are just one piece of the puzzle when it
54.
Condit et al., "Recipes or Blueprints for Our Genes?."
55.
See e.g., Nelkin, "Molecular Metaphors."
130
comes to your health. Your genes work in combination with lifestyle and other factors
to influence your personal risk for developing symptoms of hemochromatosis."
56
The
same puzzle metaphor also shows up in non-health/genetic ancestry testing. A sample
set of genetic ancestry test results by DNA Print Genomics suggests:
The problem is that it is not possible for us to distinguish between mechanism 1
and 2 (or even 3 for certain people) simply knowing the results of the BGA test,
so our 4-group admixture test is not the end to a genealogists journey, but rather
it is another important piece for the genealogists [sic] puzzle that should be
considered in light of other evidence.
57
This paragraph uses puzzle to explain a fairly complex topic: the predictive limitations
of a genetic ancestry test. In both cases, the puzzle metaphor severs the close association
between the presence of a genetic mutation and the presence of a disease.
The puzzle metaphor undercuts the language of genetic determinism. It conjures
a spatial image that emphasizes not only the spatial distance between mutation and
disease but also the necessary presence of a number of other factors that contribute to
the complete picture of what is sought through the test. In the second example, puzzle
explicitly references the predictive limits of genetic mutations: the mutations analyzed
in the test cannot predict with absolute accuracy the ancestral origins of the individual
test taker because these mutations are but one piece of a larger puzzle. In so doing,
however, the presence of a puzzle metaphor at the same time opposes a language of
56.
DNA Direct, "Hemochromatosis Report."
57.
DNA Print Genomics, "Interpretation of Results," 2008, http://www.ancestrybydna.com/
welcome/productsandservices/ancestrybydna/interpretationofresults/ (accessed June 2, 2008,
archived by WebCite at http://www.webcitation.org/5YHZ9HHnr).
131
underdeterminism. An underdeterministic language relies on making one object (a
genetic mutation) entirely independent of another (the presence of a disease). The puzzle
metaphor structures a language where the overall health picture depends on the presence
of many building blocks (genetics being only one of them). At the same time, puzzle
does not allow this picture to be complete without all of its pieces. Thus, genes cannot
be ignored even though they may be only one part of the equation. In fact, to someone
who has not yet taken a genetic test, puzzle indicates that taking a genetic test and
knowing about one's genetic makeup is a critical part of the overall health picture.
The use of metaphor is more common in genetic ancestry tracking than in
health-related genetics. Ancestry tracking services make extensive use of metaphors to
communicate an image of the discoveries that can be made through ancestry tests.
These metaphors frequently structure a narrative for the client. This use of narratives as
a heuristic for communicating complex science has been explored in depth by scholars
across a wide range of disciplines. Walter Fisher, for example, argues that, in instances
where complex technical decisions need to be made by lay publics, framing these
decisions in a narrative makes them more understandable than framing them within
traditional paradigms of rationality. This, in turn, allows for a decision-making process
that can involve not only trained experts but wider lay publics that are affected by a
technical or scientific problem.
58
58.
Fisher, "Narration as a Human Communication Paradigm." See also Walter R. Fisher,
Human Communication as Narration: Toward a Philosophy of Reason, Value, and Action
(Columbia: University of South Carolina Press, 1987).
132
Among the most common narrative features is the concept of a journey. The
journey metaphor is used to describe a range of events and processes.
59
Journey appears
frequently in genetic ancestry tests from different companies. A testing kit from
Genebase (a recent entry in the genetic ancestry market that offers to combine genetic
ancestry tracking with social networking) promises to unveil the "ancestral journey" of
our ancestors. DNA Print Genomics makes a reference to journey in the puzzle
paragraph described above. And the Genographic Project's website invites potential
participants during the informational step to participate in a "landmark study of the
human journey."
60
Journey sets expectations for the test's result because it promises a
novel discovery worth seeking, and it sets firm expectations about the outcome of the
process. Journey invokes a sense of distance and of travel: as a verb, "to journey"
indicates the activity of traveling from an origin to a destination. Journeys are
purposeful: they lead from one place to another for a specific purpose. Using journey to
describe a genetic ancestry test thus frames the test, if not as a necessity, then as an
important undertaking. It does so from two directions. On one hand, the tests purport to
59.
See e.g., Markus Milne, Kate Kearins, and Walton Sara, "Creating Adventures in
Wonderland: The Journey Metaphor and Environmental Sustainability," Organization 13, no. 6
(2006): 801-39; Jane Mills, "The Concept of the Journey," Australian Screen Education 34
(Autumn 2004): 34-40; Jonathan Picken, "Helping Foreign Language Learners to Make Sense
of Literature with Metaphor Awareness-Raising," Language Awareness 14, no. 2/3 (2005):
142-52; Ann Staton and Jennifer Peeples, "Educational Reform Discourse: President George
Bush on 'America 2000,'" Communication Education 49, no. 4 (2000): 303-319; Anne Zbierska-
Sawala, "The Conceptualisation of the European Union in Polish Public Discourse, 2002-2003,"
Journal of Multilingual & Multicultural Development 25, no. 5/6 (2004): 408-23.
60.
The Genographic Project, "About the Project."
133
reveal the journeys of our ancestors: where they originated, and where they moved over
tens of thousands of years. But as the Genographic Project's website shows, journey
also situates the test in the context of the test taker. The individual in the present is
situated within or as part of the ancestral journey: "Thanks to modern genetics," a
paragraph from the Genographic Project reads, "we are following [our ancestors']
footsteps and charting their migratory paths." In so doing, the text promises that our
DNA can introduce us to our ancestors. Whenever a new haplogroup in the customer's
DNA indicates a new tribal belonging, the website describes it with highly descriptive
language such as: "Your next ancestor, a man born around 40,000 years ago in Iran or
southern Central Asia."
61
These examples shift the predictive potential of genes from a general to a
particular scope. In reality, a genetic ancestry test can predict ancestral origins and
migration patterns only in very general terms: the chronological resolution that these
tests track through haplogroups can identify "ancestors" only as parts of large blocks of
time with an accuracy far below the accuracy required to pinpoint specific ancestors.
Here, however, precise ancestors are highlighted as individuals that can be followed and
situated precisely. In all examples, a close focus on precise ancestry positions the
client's perspective within the deep ancestral journey itself. It creates a perspective that
looks from the present into the past to the past itself. The journey thus is a chronological
rather than geographical one. From a Burkean pentadic perspective, the language is
61.
The Genographic Project, "Your Genetic History," emailed item to author, 2007.
134
weighted toward the agent. Instead of what would be a more traditional focus on the
scene (the past) that the individual can passively peruse, this language sets a
circumference
62
that casts the agent as an active participant in a historical exploration.
The weighting toward the agent is qualified as contingent, however. Re-situating
the client's perspective allows the journey metaphor to invoke contingency. Journey in
the context above opens a wide chronological gap. The ancestral narrative set up by
these texts during the informational step temporally separates the material presence of
the customer's genes and the mutations sequenced to determine ancestral information
from the results of what can be found in and predicted through the test. Genetic scientist
Spencer Wells of the Genographic Project notes: "The greatest history book ever written
is the one hidden in our DNA [...] You have an ancient story encoded in your genes, too
[...] an ongoing subscription to your genetic history."
63
The reference to "book" runs
parallel to the analogies between genes and words and letters from the evaluative steps
of health-related DTC genetics providers (as evidenced in the section on "Comic
Framing"). The use of a similar analogy here characterizes a language that does not
situate the individual customer too firmly in the chronological past. During the
62.
Burke, Grammar of Motives.
63.
The Genographic Project, "About the Project;" The Genographic Project, "From the Project
Director, Dr. Spencer Wells," 2008, https://www3.nationalgeographic.com/genographic/
participate.html (accessed June 2, 2008, archived by WebCite at http://www.webcitation.org/
5YHZzheQ7).
135
evaluative step, the IBM/National Geographic's test results read at the end of a detailed
explanation of what haplogroup results mean:
This is where your genetic trail, as we know it today, ends. However, be sure to
revisit these pages. As additional data are collected and analyzed, more will be
learned about your place in the history of men and women who first populated
the earth. We will be updating these stories throughout the life of the project.
64
Here again, the language that invokes journey at the same time indicates that the
journey is open-ended. As the Genographic Project frequently points out, ancestry
genetics is a work in progress and test results may reveal new, unexpected findings in
the future.
Journey extends to underdeterminism as well. Journey does not simply connote
travel but more specifically measured and planned travel. Drawing from the term's
French etymology (journée), the OED identifies one meaning of journey (verb) as "To
travel by ordinary daily stages" and of journey (noun) as "A day's travel; the distance
travelled in a day or a specified number of days."
65
Journeys, thus, are carefully
planned, segmented, and delineated. The journey to discover one's ancestral roots may
be open-ended and contingent but it operates within precisely determined parameters.
Genetically grounded findings about an ancestral past are, thus, controlled and
expected. Again, journey sets expectations about what type of information may be
revealed, leaving open only the particular nature of that information for a given
64.
The Genographic Project, "Your Genetic History."
65.
Oxford English Dictionary, 2nd ed. (Oxford: Oxford University Press, 1989).
136
individual. Journey frames genes as material realities that pertain to the past, but it
introduces that material reality within the controlled parameters of the test and the
testing laboratory. This sense of controlled flexibility is underlined by a range of
metaphors that go along with journey. On my personalized results page, the
Genographic Project explains the role haplogroups play in determining my genetic
history by framing a haplogroup as something that "acts as a beacon."
66
Metaphors in the Genographic Project thus shape a language in which
discovering certain genes is the goal, but where this discovery is controlled by the
individual or the company offering the test. Genes are explained not as the self-
propelled, autonomous agents a deterministic view would make them out to be. Like the
tropes and figures before, these metaphors shape a language where the dialectic between
determinism and underdeterminism, between absolute certainty and absolute
uncertainty, is carefully balanced. Thus far, much of the language used to communicate
the complexities of genetics, to separate a genetic mutation from the notion of a
predetermined outcome or meaning, and to explain the contingent range of choices
opened by a genetic test has been grounded in the vocabulary of DTC genetics: the
figures, tropes, and frames that introduce a sense of contingency into the language.
What remains absent is a situational grammar: a consideration of the different situations
66.
The Genographic Project, "Your Genetic Journey," IBM/National Geographic, 2007, https:/
/www3.nationalgeographic.com/genographic/ (accessed September 30, 2007).
137
and contexts in which individuals and groups that make use of the DTC genetics
practice find themselves.
Rhetorical Situation and the Multiple Audiences of a Genetic Test
The absence of a situational grammar is not to indicate that synecdoche, comic
frames, metaphors, and other rhetorical strategies of communication do not consider
different situations and audiences. On the contrary: the very functioning of metaphors
and synecdoche, for example, rests on a recognition of the audience and on how
different audiences or individuals differently approach or respond to this
biotechnological practice. But what these tropes accomplish is to give diverse,
pluralistic audiences a functioning language of sense-making that does not hinge on any
particular, specific characteristic. Metaphors like journey thus can do rhetorical work
for a wide range of audiences and individuals, notwithstanding the particular attributes,
expectations, background, or desires of each specific audience member. Synecdoche,
narratives, and other linguistic devices function similarly.
Some of the language in DTC genetics takes into account the audiences and
situations to which providers of DTC genetics respond. Lloyd Bitzer wrote that in its
use as a pragmatic mediation of reality, rhetoric always responds to a situation that calls
the rhetorical act and utterance into effect.
67
If the language of DTC genetics tries to
accomplish a "pragmatic mediation of reality" (in its intention to translate and integrate
67.
Bitzer, "Rhetorical Situation."
138
complex science into lay practice), it is not impervious to Bitzer's observation. This is
particularly true for health-related DTC genetics and is visible in the test results report
from the hemochromatosis test, particularly its structural division into nine chapters.
Two of these chapters respond to two particular exigencies: the social dimension of
genetic testing that requires the primary test taker to involve their biologically linked
family members into the consent and decision process, and the diagnosis-therapy gap
that could require those whose test results indicate potential health issues to reveal those
results to traditional healthcare and insurance providers.
Two of the nine chapters in the report respond directly to different situations and
to different audiences. Chapter 6, entitled "Talking With Your Family," provides the
client with the resources needed to "share the considerations and resources" required for
a larger family to make sense of the individual client's results. This might be as
straightforward as sending family members to the resources available on the provider's
website. But it goes beyond that. To preempt a common deterministic response -- that if
the primary client carries a mutation close family members will as well -- the report
advises the following:
If you or another family member has a genetic risk for hereditary
hemochromatosis, there is no right and wrong answer as to which family
members should also be tested. People have to make their own individual
decisions, based on their personal opinions about the advantages and
disadvantages of testing. Everyone has his or her own perception of risk. Some
139
people may think a risk of 1 in 100 is high, while others may view it as low and
think there is a 99 in 100 chance that they are not at risk.
68
The language here revolves not only around the primary client but also his or her
family. This is evident in content and form. The language in this section is characterized
by an almost paternalistic style that emphasizes the potential hidden effects test results
can have on larger family structures. In this instance, qualifiers introduce hypothetical
scenarios contained by the issue of familial (and biological) guilt: "Sometimes, parents
may feel guilty that they have passed on the genetic risk. Other relatives may not want
testing because they would feel guilty if they did not have the genetic mutation, while
other family members have been affected."
69
The question in all these instances is not
how to make sense of risk and of hereditariness but how to make sense of it and convey
it to others who may be affected. The presence of family members that are biologically
linked to the primary test taker presents one exigence to which the the results need to
prepare the test taker to respond.
But it is not the only one. The primary care physician and insurance provider
(both within the traditional healthcare institutions) are another. Chapter 7 of the report,
entitled "Working With Your Health Care Team," is designed for these situations. The
chapter emphasizes: "It is up to you whether to share these test results with your
doctor."
70
Emphasis here is on choice. But choice is emphasized within the particular
68.
DNA Direct, "Hemochromatosis Report."
69.
Ibid.
70.
Ibid.
140
constraints of a situation in which the patient would consult with his or her healthcare
provider. Rather than the more general sense of choice emphasized by synecdoche,
metaphors, or narratives earlier (where choice was a function of being able to take
action despite and in response to the presence of genetic mutations), choice here is a
response to a particular social situation or institutional context. These texts invite choice
but also emphasize caution. On the question of whether a client should try to get
reimbursement through insurance providers, for example, the chapter warns about
possible discrimination: while illegal for employment, genetic discrimination still can
manifest itself in form of high premiums on life or health insurance. Here, too, the
communicative interaction responds to the exigency presented by a specific situation.
These are but a few of many examples that highlight the rhetorical strategies I
found in these texts. These strategies prominently shape and structure a language that
acts as a heuristic resource and a vocabulary of motives for lay clients. Through the five
rhetorical strategies discussed here, the market language communicates an
understanding of the complex, contingent choices enabled by genes and genetic
technology and situates genetic complexity in relation to the life choices of individual
clients. Synecdoche, comic framing, diachronicity, metaphor/narrative, and rhetorical
situations all translate the mathematical and social complexities of genetic science and
technology into lay terms and practices. They undercut the deterministic language that
frequently dominates common understandings of applied genetics by shaping an
understanding of the complex uncertainty and contingency that derive from the
141
mathematical probabilities and social consequences of genetic testing and are critical to
understand for those who choose to purchase a test. Undoubtedly, there are other
rhetorical strategies that perform very similar work as these five. Identifying and
collecting them all would provide a more accurate lens of how the market discourse
translates complex science into lay practice. Given the richness of the texts I found,
such an endeavor easily could take up the entire space of this project. Rather than
further catalogue how the market language symbolically separates mutation from
disease and how these rhetorical strategies provide a grammar and a vocabulary to
situate complex science in relation to social practice, the next section discusses the
normative implications of these strategies.
Normative Implications
The market language of DTC genetics exerts a normative effect in terms of
where it situates agency. It communicates mathematical and social genetic complexity
by disassociating mutation from disease in an effort to communicate that genetic testing
and its results remain contingent and open rather than close off choices the individual
test taker needs to make. By severing the necessary, predetermined causal connection
between the presence of a genetic mutation and the presence of a disease, these texts
work to restore a sense of agency to the individual. Genes are shown not to be the
142
autonomous agents of an actor-network model,
71
nor are they the selfish forces of
Richard Dawkins' imagination.
72
Instead, within the symbolic frame of contingency,
genes are disassociated from becoming inevitably linked to a specific and
predetermined interpretation and thus, to a certain degree, the interpretation of what the
future holds remains within the control of the individual. Probably most evident in the
comic frame, the symbolic separation of mutation and disease allows clients to retain a
sense of control over their genes: the presence of a genetic mutation would not mean
that the presence of the corresponding disease is unavoidable; on the contrary, the
individual would have the agency to shape future outcomes.
With such agency comes responsibility, however. The market language of DTC
genetics emphasizes that individual clients are responsible for the consequences of
taking a test and gives full responsibility for choices and decisions to the individual. In
this sense, the market language of DTC genetics has an epideictic function. In situating
agency within the limits of the individual, this language assigns responsibility and, in
turn, praise and blame. In other words, who is to praise or blame for expected and
assumed or unexpected and harmful consequences is tied closely to where the agency
for making choice and decisions is situated.
71.
Latour, Pasteurization of France; Williams-Jones and Graham, "Actor-Network Theory."
72.
Richard Dawkins, The Extended Phenotype: The Gene as the Unit of Selection (San
Francisco: Freeman, 1982); Dawkins, Selfish Gene.
143
This particular configuration of an epideictic language differs when the language
is not that of the market but of other institutions. As much as the language of
informational websites, informed consent forms, and reports of test results tries to
extend an understanding of genetic complexity to lay publics that maintains an
awareness of risk, other institutions are more forceful in discussing the risks of DTC
genetics. In so doing, the next chapter will show, they shift the locus of responsibility.
In terms of legislation, for example, the Secretary's Advisory Committee on Genetics,
Health, and Society's report on the oversight of genetic testing, published in 2007
emphasizes how responsibility for communicating the complexities of genetic
biotechnology has shifted: "The responsibility for the interpretation of laboratory tests
has typically rested with the ordering clinician [but] the ability to self-order tests [...
indicates] that patients will assume increasing responsibility in the interpretation and
and utilization of these test results."
73
But does this legislative language approve of such
a shift in agency and responsibility? Or is it instead concerned with these new
developments, arguing for an alternative? The next chapter explores how a number of
other institutional sites also have a voice in the larger communicative field of DTC
genetics. In particular, legislation, medicine/healthcare, and public advocacy groups all
see themselves as necessary parts of the practice of DTC genetics. The following
chapter explores in what ways these institutions see themselves integrated into this
73.
Secretary's Advisory Committee on Genetic Testing, U.S. System of Oversight of Genetic
Testing: A Response to the Charge of the Secretary of HHS (Bethesday, MD: National Institute
of Health, 2007), 137-138.
144
practice, how the ways in which their languages frame the complex nature of genes in
relation to existing social practice resembles or differs from that of the market, and what
normative effect these similarities and differences carry.
145
Chapter III
Contesting and Regulating the Market Language of DTC Genetics: The
Nonmarket Actors
The language of the DTC genetics market explored in the previous chapter does
not exist in a vacuum. On one hand, the primary site for the practice of DTC genetics
remains the market: it is through market transactions, and the market's language, that
clients of DTC genetic services inform themselves about, purchase, and receive results
about their genetic information. Despite the relative institutional autonomy that the
market currently enjoys, other institutions, ranging from legislative and regulative
bodies to public advocacy groups and the medical/healthcare system, surround these
market practices -- and increasingly, traditional regulative institutions seek a bigger
voice in DTC genetic services. After initial inertia by nonmarket actors that allowed
DTC genetics businesses to grow both in size and in the variety of testing offered
without much interference, the landscape has changed. Today, legislators are trying to
get a hold on the burgeoning DTC genetics industry before its increasing relevance can
pose risks to public health. Public advocacy groups recognize a lack of public
awareness about the risks and benefits (or often the very presence) of DTC genetics and
try to explain to large audiences the potential benefits and pitfalls of this new field's
practices. And the medical and healthcare system, already involved in clinical genetic
testing, slowly begins to ready itself to respond to patients walking into clinics or into
146
their primary physician's offices for followup treatments to a DTC genetic test they took
outside the doctor's supervision.
Thus, institutions other than the market share the rhetorical problem of having to
create complex communicative practices that can relate the mathematical and social
complexities of genetics to the existing social practices of individuals, families, and
publics and, thus, integrate this new biotechnology into the social space. This chapter
highlights the three institutions that to date most clearly have demonstrated their stakes
in becoming involved in DTC genetics: federal legislators and regulators, medical
organizations, and public advocacy groups. Federal legislators grapple with how best to
ensure that lay clients have knowledge of and access to appropriate experts in healthcare
and other fields that can translate complex issues of genetic risk for them. Public
advocacy groups like the Genetic Alliance, the Center for Genetics and Society, and the
Genetics & Public Policy Center have similar concerns, and seek to ensure that lay
clients fully understand the risks of taking a genetic test. Medical organizations, such as
the American College of Medical Genetics, would prefer to see the authority for
translating risks and making decisions in regard to genetic testing vested in medical
expertise and technology instead of private laboratories, companies, and lay individuals.
All three institutions have generated texts that address DTC genetics, but all
three have done so only sparingly. In this chapter, these texts are explored. First, I
analyze the legislative history of efforts toward federal regulation and oversight of DTC
genetics: to date, the texts that have addressed DTC genetics specifically are limited to
147
two reports issued by the Secretary's Advisory Committee on Genetic Testing in 2000
and in 2007, and a hearing by a Senate Committee on DTC genetic testing in 2006.
Second, I look for instances in which medical organizations directly address the issue of
DTC genetics: here, too, the texts that deal most actively with DTC genetics are limited
to a set of three statements from the American College of Medical Genetics, published
in 2004, 2007, and 2008. Third, I examine where and in what way the publications of
genetics advocacy groups contribute to the discourse of DTC genetics. Among a
number of large genetics public advocacy organizations, only the Genetics & Public
Policy Center addresses DTC genetics explicitly. Despite the scarcity of texts produced
by representative organizations within legislation, medicine, and public advocacy, I
highlight the similarities between these three institutional languages and show that the
languages of these nonmarket actors approach the rhetorical problems of genetic
complexity differently than the language of the market, with implications for the
practice of DTC genetics.
How the languages of nonmarket institutions frame genetic complexity in
relation to social practice and what normative implications the way in which they
approach this complex communicative task carries constitute the central questions of
this chapter. If the nonmarket institutions above face the same rhetorical problems as
the market and must figure out ways to communicate the complexities of genetics to lay
publics, be it to inform or to warn them, then do the languages used by these institutions
share rhetorical strategies with the market's language? In other words, are the rhetorical
148
sense-making mechanisms and strategies the same as evidenced in the market
discourse? If there are similarities in how institutional languages create heuristics for
complex genetic science, are there also differences? If so, how do these differences
manifest themselves, and to what normative consequence?
In this chapter, I argue that there are similarities but more importantly
differences between the market discourse and the languages of nonmarket actors. The
texts I analyze in this chapter retain a sense of contingency: they, too, emphasize the
contingent nature of genetic testing and negate the radical certainty conveyed in
biologically deterministic discourses. But the languages of the three nonmarket actors
analyzed take a decisive turn from how the market's language addresses contingency
and uncertainty: they seek to restore a sense of agency, but where they situate the power
to make choices, evaluate actions and consequences, and integrate the results of tests
into the lives of clients differs. The first section explores the first and most active
nonmarket actor in the field of DTC genetics: legislation.
Federal Legislation
Concerns about applied genetics have led government legislators to pursue
oversight and legislation of the use of applied genetic technology for over a decade.
Both on the level of state and federal legislation, efforts have been underway to create
effective norms and rules to regulate applied genetics in ways similar to the regulation
of traditional medical practice. On the state level, such efforts has proven fairly
149
successful: states like New York now have proposed legislation that would block
companies from offering genetic services directly to clients without using a licensed
physician or genetic counselor as an intermediary.
1

On the federal level, however, regulation and oversight of genetic testing in the
U.S. remains a scattered patchwork of acts, bills, hearings, and recommendations.
Efforts at enacting legislation on the federal level that would provide uniform regulation
across the states has been ineffective so far. The DTC variety of genetic testing in
particular has received little attention from government regulators, and to date largely
remains outside well-established institutional boundaries. The New York Times reports
that despite increased concern about the risks and the chance that "patients could be
harmed" from DTC genetic testing, regulatory oversight is "not keeping up" with the
explosive growth of genetic testing.
2
This is not to say that no governmental oversight
exists. But for a long time, such oversight focused on one issue only: the issue of
privacy. Thus, the following pages explore federal legislation and regulation of
genetics: how it initially was concerned with privacy and applied genetics in general,
then moved into wider issues that needed to be discussed in the context of genetics, and
eventually addressed DTC, or "at-home" genetics specifically.
1.
However, most state level legislation remains pending on the question of whether DTC
genetic services will be recognized as medical or as informational technology.
2.
Robert Pear, "Growth of Genetic Tests Concerns Federal Panel," New York Times, January
18, 2008, http://www.nytimes.com/2008/01/18/us/18tests.html (accessed January 21, 2008,
archived by WebCite at http://www.webcitation.org/5V1N31YB6).
150
Privacy Legislation
At first, legislation over the use of general applied genetic technology centered
on the issue of privacy. An early landmark case for the regulation of genetic privacy
was Executive Order 13145, ordered by President Bill Clinton on February 8, 2000;
shortly after Clinton's executive order, efforts began to introduce more wide-ranging
privacy legislation into law -- efforts that ended up taking years to pass into law.
Executive Order 13145. Clinton's Executive Order 13145 prohibits
discrimination based on genetic information in federal employment, and has come to be
seen widely as a landmark text that will pave the way for more wide-reaching
legislation against genetic discrimination. Executive Order 13145 imposes strict rules
against genetic discrimination. Its first section reads:
It is the policy of the Government of the United States to provide equal
employment opportunity in Federal employment for all qualified persons and to
prohibit discrimination against employees based on protected genetic
information, or information about a request for or the receipt of genetic services.
This policy of equal opportunity applies to every aspect of Federal employment.
3
Not only does the executive order forbid genetic discrimination, it also excludes
information a potential employee received from prior use of genetic services from
influencing employment decisions. For DTC genetic services, the latter allows clients to
make use of these services safely, without fear that their information eventually will be
used against them for purposes other than what those for which the test was ordered.
Yet despite its landmark status, the executive order never addresses DTC genetics
3.
Clinton, "Executive Order 13145," 6877.
151
explicitly, nor can its recognition of the privacy dangers exposed by a wide use of
genetic technology mask the limitations imposed by its narrow scope. Indeed, at the
time Clinton issued Executive Order 13145, a far more wide-reaching bill was making
its way through Congress.
The Genetic Information Nondiscrimination Act. Clinton's executive order
prohibits genetic discrimination only in federal employment; an important step, but for
those who seek employment outside the federal government more symbolic than
practical. Three years after Clinton signed Executive Order 13145, a Congressional bill
sought to remedy these shortcomings. The Genetic Information Nondiscrimination Act
(GINA) effectively expands the purview of Executive Order 13145 to include protection
against genetic discrimination for almost everyone. Subtitled "A bill to prohibit
discrimination on the basis of genetic information with respect to health insurance and
employment," GINA seeks to regulate the use of private genetic information for
purposes of employment and insurance. Its goal is to allow individual citizens to enjoy
the benefits of genetic testing without fearing retribution from employers of insurance
companies, who could interpret the individual's heightened genetic susceptibility to
specific diseases (or even ancestral information) as grounds for discrimination. As Rep.
Judy Biggers (R-Ill.) said after the passing of GINA, "[w]e will never unlock the great
promise of the Human Genome Project if Americans are too afraid to get genetic
152
testing."
4
Insurance companies, for example, could deny coverage for someone with
genetic markers that indicated a heightened possibility for a specific type of cancer,
even though the actual manifestation of the disease in the future remained contingent,
and even though controlling environmental factors could counterbalance heightened
genetic risk.
Despite its benefits, GINA proved difficult to introduce into law. First
introduced by Rep. Louise Slaughter in 1995, GINA was voted on first in the Senate in
2003, where it passed 95-0. Later that year, it did not make it through the House of
Representatives. In 2005, GINA was re-introduced and was approved by the Senate in
another landslide vote of 98-0. Again, GINA could not pass the House vote. On January
16, 2007, GINA was introduced in a House now controlled by Democrats; this time, it
was approved by the House after a number of amendments on April 25, 2007, with 420
4.
"House Backs Gene-Discrimination Plan," New York Times, May 1, 2008, http:/
/www.nytimes.com/aponline/washington/AP-Genetic-Discrimination.html (accessed May 1,
2008).
153
votes and with a total of 216 bipartisan sponsors. Finally, on April 25, 2008, GINA
passed a Senate vote 95-0, followed shortly by a House vote of 414-1.
5

GINA's passage may have been difficult because its scope was far wider than
that of any previous legislation.
6
GINA amends the 1974 Employee Retirement Income
Security Act and the Public Health Service Act to prohibit discrimination based on
genetic information for both health insurance providers and private and public
employers. GINA was not alone, nor was it first in this attempt to prohibit genetic
5.
"House Passes Landmark Ban on Genetic Discrimination," CQPolitics, May 1, 2008, http:/
/www.cqpolitics.com/wmspage.cfm?docID=cqmidday-000002715179 (accessed May 1, 2008,
archived by WebCite at http://www.webcitation.org/5XUtLgBgt). Even though the Genetic
Information Nondiscrimination Act recently passed into law, privacy issues continue to persist
in some professions. Military personnel, for example, do not fall under GINA's protection if
they served less than 8 years: an L.A. Times article lists the case of a number of active military
persons who were medically discharged without military disability or health insurance coverage
because a prior genetic condition was argued to be a preexisting condition. Such muddling of
"condition" and "susceptibility to a condition" becomes problematic when, as was the case with
these military persons, the likelihood of some event in the workplace triggering the illness is
high compared to the likelihood of the person entering service with the illness already manifest.
And because military personnel cannot, under threat of court-martial, receive genetic testing
from private companies and so remain anonymous, military doctors actively discourage patients
from taking genetic tests that may be important and beneficial to them. See Karen Kaplan, "U.S.
Military Practices Genetic Discrimination in Denying Benefits," Los Angeles Times, August 18,
2007, http://www.webcitation.org/5RVrxG17Q.
6.
Unlike Executive Order 13145 that was restricted to government employment and largely to
health-related genetic test results, GINA provides a wide definition of genetic services. Both its
definition of "genetic test" and "genetic services" remains broad and incorporates health-related
as well as non-health genetic services. Its definition of "genetic test" borrows much of the
language Executive Order 13145 uses, but drops the executive order's qualification of "disease-
related genotypes of mutations" in favor of "genotypes, mutations, or chromosomal changes."
Similarly, GINA's definition of "genetic services" incorporates genetic tests, genetic counseling,
and genetic education. GINA so parallels executive order 13145 in many ways, but drops the
latter's "health" qualifier. If, as Kenneth Burke holds, language establishes a circumference that
provides principles of selection or determination, previous legislation deflected peripheral
genetic services from their scope of privacy protections, while GINA implicitly includes them.
154
discrimination from insurance companies and employers: various federal and state laws
had already addressed the issue of genetic discrimination in one form or another. But
because of what its sponsors called this "patchwork of State and Federal laws,"
7
GINA
set out to establish a "national and uniform basic standard ... to fully protect the public
from discrimination and allay their concerns about the potential for discrimination,
thereby allowing individuals to take advantage of genetic testing, technologies,
research, and new therapies."
8

Despite its widely increased scope and the critical protections GINA provides to
citizens, the bill's focus on privacy betrays limitations that are significant to the practice
of DTC genetics. Like Clinton's executive order, GINA addresses applied genetics in
general, but makes no mention of DTC genetics. In so doing, it presupposes the
existence of a healthcare system able to deal with genetic testing and of a practice of
genetic testing where individuals consult with their doctors and healthcare providers
who help them through the process and help them understand the complexities and risks
of genetic testing results. As an intervention into the critical issue of privacy, GINA
thus is successful. As a bill that would provide regulation and oversight over a DTC
genetic testing industry that draws its benefits from giving clients the option to bypass
traditional healthcare in order to maximize anonymity and that and frequently operates
7.
Genetic Information Nondiscrimination Act of 2007, HR 493, 110th Cong., 1st. sess.,
Congressional Record 153 (April 25, 2007): H4084.
8.
Ibid.
155
outside the strictures of preexisting healthcare institutions, however, the intervention
provided by GINA remains inadequate.
The necessity of moving beyond privacy. GINA's omission of issues beyond
privacy and of genetic testing practices that take place outside the purview of existing
healthcare institutions may be linked to two reasons. First, for a long time, genetic
science and technology primarily existed within the domain of large, transnational
consortia like the Human Genome Project. The private use of genetic testing thus
seemed far-fetched and not worth addressing explicitly in legislative texts. Exceptions
to large-scale institutional applications of genetics exist but are costly: in 2007, for
example, James Watson, one of the scientists who discovered the helical structure of
DNA, had his entire genome sequenced in only two months for just under $1 million.
9

Second, the number of genes analyzed in an at-home test remains small in comparison
to the entire human genome and, in comparison, poses relatively little privacy risks. A
typical ancestry test, for example, sequences only one pair of chromosomes out of 23
pairs
10
or mitochondrial DNA that exists outside the cell's nucleus and identifies around
399 nucleotide pairs from an estimated total of over 3 billion. The small number of
9.
Wade, Nicholas. "Genome of DNA Pioneer Is Deciphered." New York Times, June 1, 2007,
http://www.nytimes.com/2007/06/01/science/01gene.html (accessed May 31, 2007). Interesting
to note from an ethics point of view is that while Dr. Watson agreed to have his entire genome
used for research, he made an exception for one specific gene that would tell whether he was
predisposed toward Alzheimer's. The burden of knowledge derived from genetic information
closely interfaces with the consideration of genetic risks and will be a topic of the next chapter.
10.
Or more precisely, since diploid human cells carry 22 pairs of autosomes and a pair of
gonosomes that varies by sex, a paternal lineage test effectively restricts itself to 1 out of 46
chromosomes in a cell.
156
genes reveals so little information that, to some, privacy violations would seem
unlikely. The gene sequence reported as a string of alphabetic base pair abbreviations
by Genebase from my own mitochondrial DNA (base pairs 16001-16400), for example,
has less than half as many characters as this paragraph.
Companies that offer DTC services like to play up the low number of genes they
sequence to avoid the perception that their service exposes clients to privacy risks:
Alastair Greenshields, president of DNA Heritage, is quoted by Forbes Magazine as
saying that "customers also appreciate a genealogy test that doesn't reveal too much
about an individual's medical profile."
11
Results from health-related DTC genetic
services may be more privacy-sensitive but still reveal fairly little information compared
to the kind of information a full-genome sequence would reveal.
In recent years, however, a shift toward more personalized, individual genetic
research and genetic technologies made the omission of personalized medicine from
privacy legislation problematic. Providers of DTC genetic services may decode only a
narrow range of information because decoding the entire human genome is a costly and
ineffective way to get to the desired information. The genetic sample they receive from
clients, however, contains the client's genome in its entirety. Between Moore's Law and
significant governmental and private funding for genetic research, it may be only a
matter of time until an entire human genome can be decoded quickly and cost-
11.
Andy Greenberg, "Genealogy Gets Genetic," Forbes.com, May 31, 2007, http:/
/www.forbes.com/2007/05/31/celebrity-dna-gene-tech-cx_ag_0531celebritydna.html (accessed
June 1, 2007, archived by WebCite at http://www.webcitation.org/5PHKrDGQm).
157
effectively
12
-- even more so since only a relatively small part of the human genome is
responsible for coding proteins and thus of interest for applied genetics. Already, a
number of efforts are underway to decode the human genome in its entirety more
quickly and more cost-efficiently than previously thought possible.
Among these efforts are private groups like the X-Prize Foundation. The X-
Prize Foundation, a U.S.-based foundation that offers large monetary rewards for
reaching scientific milestones, has offered a $10 million prize to the first private
research team to decode 100 human genomes in 10 days.
13
Meanwhile, an Ottawa-based
company, Spartan Bioscience, has made a first push into selling small, personal DNA
analyzers that promise fast at-home real-time polymerase chain reaction analysis of
small batches of DNA samples. And a private research team led by Biologist J. Craig
Venter announced on September 4, 2007, that they sequenced a full (diploid) genome
belonging to just one person -- in stark contrast to the 2003 genome from the Human
Genome Project where the sequenced DNA came from only one set of chromosomes
(haploid) and was comprised by multiple people.
14
Already, a number of companies
12.
Amy Harmon, "6 Billion Bits of Data About Me, Me, Me!," New York Times, June 3, 2007,
http://www.nytimes.com/2007/06/03/weekinreview/03harm.html (accessed June 3, 2007).
13.
Matthew Davis, "$10m Prize for Super Genetic Test," BBC News, 2006, http:/
/news.bbc.co.uk/2/hi/science/nature/5404678.stm (accessed April 25, 2007, archived by
WebCite at http://www.webcitation.org/5ONGY3XxG).
14.
Nicholas Wade, "In the Genome Race, the Sequel is Personal," New York Times, September
4, 2007, http://www.nytimes.com/2007/09/04/science/04vent.html (accessed September 4,
2007).
158
(23andMe, Navigenics, and deCODEme) have been founded to offer full-genome
sequencing
15
for under $1,000.
The potential benefits of these developments are significant. On the research
side, rapid genetic sequencing allows for a more complete representation of the human
genome and a more complete map of the effect of all relevant genes on various aspects
of our biological selves. On the application side, decoding significant parts of a client's
genome could lead to increasingly customized health prevention practices and enable
pharmacogenetics to change fundamentally the way prescription drugs are used. Venter
believes, for example, that "making individual DNA sequences public to advance
knowledge and hasten the era of personalized genomic medicine."
16
Such progress can
become problematic beyond considerations of privacy, however. If, for example, a
client had her or his entire genome sequenced to gain access to specific medical
information, and if the client had access to this genomic information, then future
findings that link new genes to new diseases expose the client to knowledge of those
new diseases as well, without their explicit and informed consent. Hypothetical
examples like these, coupled with the actual developments discussed above, indicate
that both Executive Order 13145 and GINA may have been too narrow in their focus on
privacy and omission of highly personalized, small-scale genetic technology. These
15.
"Full-genome sequencing" to the extent that they offer to sequence most known genes and
compile a complete health, ancestry, and inheritance/phenotype list for their clients. See Chapter
V for a more detailed look at these companies.
16.
Wade, "In the Genome Race."
159
issues led to legislative efforts that pushed beyond privacy and considered the risks of
applied genetics more holistically. A key document in these efforts was a set of
recommendations issued by the Secretary's Advisory Committee on Genetic Testing,
first published in 2000.
Pushing Past Privacy: The Secretary's Advisory Committee on Genetic Testing
The Secretary's Advisory Committee on Genetic Testing (SACGT) was
chartered by the Secretary of Health & Human Services, Donna Shalala, in 1998.
Recognizing the need for a governmental advisory office for issues of applied genetics
and combining two of the key actors involved in the Human Genome Project, SACGT
was "a response to recommendations of two working groups commissioned jointly by
the National Institutes of Health (NIH) and the Department of Energy (DOE) for the
Human Genome Project," designed to "help the Nation address the benefits and
challenges of genetic knowledge and genetic testing."
17
In July of 2000, SACGT
released its first major report on genetics, entitled "Enhancing the Oversight of Genetic
Tests: Recommendations of the SACGT." The first federal document of its kind to
address the issue of genetic testing beyond privacy considerations, this 32-page
document was designed to inform and protect the public: after acknowledgements,
introductions, and a discussion of the public consultation process that underlies it, the
17.
Secretary's Advisory Committee on Genetic Testing, "About SACGT," 1999, http:/
/www4.od.nih.gov/oba/sacgt/aboutsacgt.pdf (accessed April 29, 2008, archived by WebCite at
http://www.webcitation.org/5XRoLUMEl).
160
document outlines the "Characteristics of Genetic Tests and Implications for Oversight"
(including the issue of "Complexity of Human Disease," the "Gap Between Diagnosis
and Treatment," the "Changing Nature of Genetic Information," and potential benefits
and risks of genetic tests), the "Current System of Oversight of Genetic Tests," and a set
of "Conclusion and Recommendations." Even on its own, the table of contents
demonstrates that this report widens its scope beyond privacy.
The 2000 SACGT recommendations. The SACGT document distinguishes itself
from Executive Order 13145 and GINA because it goes beyond the issue of genetic
privacy and toward issues that would later become central to discussions over DTC
genetics. Privacy of genetic information remains a central concern. But the emphasis
here is not on privacy per se. Instead, privacy becomes a means toward an end: public
health. If privacy concerns prevent a larger lay public from using these tests, the
document argues, then the public will forego genetic diagnostic technology that
otherwise would lead to improved medical and health practices. The report states as one
of its overarching principles that "[o]ne of the main goals of genetic testing is to
improve the health and well-being of individuals and families."
18
It further adds that
Federal legislation is also needed to protect the privacy of genetic information as
well as other medical information in medical records. Without these protections,
the public will be reluctant to undergo genetic tests that might be beneficial to
its health and well-being.
19

18.
Ibid., vii.
19.
Ibid.
161
Considering privacy risk thus remains important mostly insofar as resolving privacy
issues leads to wider adoption of genetic testing in health practices. The primary focus
of oversight, SACGT implies, needs to be shifted from privacy issues to the medical
benefits of applied genetics.
The emphasis on potential benefits, however, stands in stark contrast to the
cautionary stance of the rest of the report. This cautionary stance is justified by a
repeated emphasis on the contingent nature of genetic testing. The report cautions that
genetic tests only can test for a certain number of mutations and cannot "detect every
mutation a gene may have."
20
Different mutations can cause different types and risks of
susceptibility, and negative results may not indicate that no mutations that heighten
susceptibility are present. It cautions about the complexity of how genetics and human
disease relate, much of which (including environmental interactions) is still unknown.
So, predictive testing cannot give clear answers about the likelihood of disease.
21
It
discusses risks that stem from the "therapeutic gap," where the gap between diagnosis
and the possibility of treatment can lead to "significant emotional and psychological
effects" when no treatments are available for a diagnosed or even predicted disease
(e.g., Huntington's or cancer).
22
It discusses how positive results can impact an
individual's or family's reproductive choices, and negative results may lead mistakenly
20.
Ibid., 6.
21.
Ibid.
22.
Ibid.
162
to individuals foregoing screening. And it mentions risks to family dynamics where, for
example, a child born with one copy of the sickle cell gene mutation would indicate that
one parent is a carrier, or where an infant's genetic test inadvertently could reveal
parentage information.
23
Risks, the document correctly identifies, are not physical but
instead emotional, psychological, familial, social, and economic (and can cause
"persistent worry, confusion, anger, depression, and even despair"
24
). There even is an
almost ontological undertone to the document's language: genetic testing in part is
difficult to compare to other diagnostic methods because there remains a "widespread
perception that these tests are different and that people experience genetic testing in a
way that is dissimilar to the experience of other forms of medical testing."
25
The
language here conveys a difference that is not one of testing procedure or diagnostic
results. Instead, it conveys a sense of contingency that is distinctly present but difficult
to pinpoint and thus adds to the uncertainty that surrounds these tests and the
consequences of taking them.
The rhetorical patterns through which the language of this document provides a
justification for oversight remain similar to those of the market-driven segments of DTC
genetics. The language of the SACGT document conveys a sense of contingency that
surrounds genetics. Genes, and as a corollary the results of genetic tests, are not the
23.
Ibid., 8.
24.
Ibid.
25.
Ibid, 13.
163
deterministic predictors of the future they may appear to be. As was true for the
market's language, shaping uncertainty from a legislative perspective can hinge on a
diachronic dimension. The SACGT report discusses risks about the contingency of
outcomes from genetic services, where future research could increase the validity and
utility of stable test results and change the nature of their use in "clinical and public
health practice."
26
A central argument for oversight is: "Based on the rapidly evolving
nature of genetic tests, their anticipated widespread and extensive concerns expressed
by the public about their potential for misuse or misinterpretation, additional oversight
is warranted for all genetic tests."
27
"Rapid evolution," "anticipation," and "potential"
convey a sense of expectation and assumption about what the future holds, but remain
firmly within the realm of the probable instead of the certain. The grounding in future
uncertainty is maintained at other points:
As the diagnostic and predictive uses of genetic testing continue to increase, and
as the effects of testing on society become clearer, its impact will become
broader and ultimately will affect all of our lives. Because the use and
ramifications of these tests are not yet fully realized, additional consideration is
needed regarding whether current programs for assuring the safety and
effectiveness of genetic tests are satisfactory or whether additional oversight
measures are needed before such tests are introduced for wide-scale use.
28
In this passage, focus moves from individuals to the public as a whole ("ultimately will
affect all of our lives"), but this public impact is located in an unknown future.
26.
Ibid., 7.
27.
Ibid, ix.
28.
Ibid, 4.
164
Similarly, "the process of discovering and understanding genetic mutations and their
role in disease is extremely complex and can involve many years of investigation [...]
Nevertheless, the development and clinical use of genetic tests is expected to increase
rapidly over the next decade [...]."
29
In the section on "The Changing Nature of Genetic
Information," the text explicitly states:
Understanding the benefits and risks of a genetic test to individuals or particular
populations, which may change over time as more information is gathered, is
critical in determining its appropriate use in clinical and public health practice.
As further research is conducted and knowledge gained, the validity and utility
of test results may increase or decrease.
30

This sense of contingency makes evident the similarity but also the difference
between the market language of DTC genetics and that of legislation and oversight.
On one hand, patterns emerge between legislative discourse and the discourse of the
DTC genetics services industry. In both, genes and genetic technology are shown to
operate within a framework of contingency. The function of this rhetorical pattern is
flipped, however. The market language of DTC genetics services recognizes that there
is a difference between this new technology and the existing norms and practices of
medical diagnostic services but finds this difference to be favorable for DTC genetics:
both in terms of agency and in a more pragmatic sense in regards to concerns of
privacy, cost, and comfort, the language of DTC genetics providers makes clear that the
gap between this new technology and traditional medical practice gives the new
29.
Ibid, 2.
30.
Ibid., 6-7
165
technology unique benefits. The legislative language of this document recognizes the
same difference but frames it as problematic: rather than providing benefits, how DTC
genetics differs from traditional clinical and medical diagnostics makes the practice of
DTC genetics more problematic. The implicit understanding that emerges is that where
uncertainty in the market discourse extended a sense of empowerment to clients, here
uncertainty makes the technology problematic and requires regulation to assure that the
market's language does not nurture a false sense of agency.
Thus, what differs between the languages of the market and of legislation is
where this legislative language locates the agency for choice and decision-making.
Instead of shaping an understanding of the complex, contingent choices enabled by
genes and genetic technology that would locate agency with the individual, the risks of
genetics point toward the need for a more collective, public site where agency and
choice parameters are set.
31
The SACGT report consistently pushes past the notion of
genetic technology as a site of individual, personal choice and seeks to open up the
space of genetic technology to larger public consideration. The report makes abundant
use of commonplaces like "public involvement" and the use of "public health
protection" to justify its claim that oversight over DTC genetic technology is critical but
lacking. The first line of the acknowledgments section states: "The participation of the
31.
For a related discussion on the question of biocitizenship, see Alexandra Plows and Paula
Boddington, "Troubles with Biocitizenship?," Genomics, Society, and Policy 2, no. 3 (2006):
115-35.
166
public was fundamental to the development of this report."
32
The report continues to
emphasize that it was compiled "in consultation with the public," and that it is based on
"consideration of the public comments."
33
This concept of a public authorship
consistently underwrites the report: it is designed "to ensure public access to quality
genetic tests,"
34
and it argues that "the public is best served by ensuring both the
adequate oversight of genetic tests and the continued development of genetic tests."
35

Stating how "it is critical for the public to understand that while genetic tests can be
extremely beneficial, they also can pose risks,"
36
the report becomes "especially
important to reach out to diverse communities that might have particular concerns about
genetic testing and members of the public who have not yet undergone genetic
testing,"
37
ensuring that "availability of and access to genetic counseling would reduce
the public's concerns about genetic testing."
38
This repetition of the public topos puts
emphasis on the question of agency as it is situated within the public rather than
individual space.
32.
Ibid, iii.
33.
Ibid.
34.
Ibid.
35.
Ibid, viii.
36.
Ibid, 4.
37.
Ibid.
38.
Ibid, 16-17.
167
The language of SACGT's report emphasizes a vested interested in public
participation for the process of creating the document and a civic need for the existence
of such a document to protect and guide public uses of genetic services. The way in
which agency for decision-making in genetics is shifted to the public is through a sense
of contingency conveyed by an ambiguous view of the future. In the language of
SACGT's document, genes themselves remain anchored in biological certainty -- but it
is a certainty that the current state of technology and knowledge can grasp only in
fragments. In practice, thus, genes and genetic technology are located in a space of
chronological contingency, a sense of contingency that cannot be predicted or resolved
but can be managed. Thus, the language follows the basic rhetorical function of the
market's language: it emphasizes uncertainty in order to undermine deterministic
perceptions of genetics. But what this regulative language reveals is that uncertainty
should be managed through the generally held and deliberated norms of a collective
rather than through the preferences and interests of individuals.
Such efforts at introducing collective agency as a site for managing the
necessary contingency within which genetic applications must be framed are necessary.
Sociologists found that from a lens of reflexive modernity, genetic determinism and
reductionism can significantly influence how new genetic risk is constructed.
39
Because
the reflexively modern view removes agency from the individual and creates constraints
39.
Anne Kerr and Sarah Cunningham-Burley, "On Ambivalence and Risk: Reflexive
Modernity and the New Human Genetics," Sociology 34, no. 2 (2000): 283-304.
168
around the individual's choices and preferences, framing genes and genetics as
contingent allows for a shift from determinism (where the genes themselves determine
future outcomes) to a model of communal decision-making (where the individual
relinquishes personal agency, but invests agency in a communal process of decision-
making about the regulation of genes). Uncertainty thus remains central to a practice of
applied genetics but, because the complexity of genetics renders individuals-as-
individuals incapable of foreseeing what effects their choices can have for themselves
and others, such choices now are entrusted to the deliberative sensus communis of a
collective. What counts as grounds for choice is enabled and constrained by what
Habermas calls moral-practical discourse:
40
redeeming claims about the validity of an
action here is restricted by the limits of an imperfect knowledge about genes and genetic
technology. Managing available choices within this framework of contingency requires
not a language that remains content with uncertainty (as does the language of DTC
genetics providers). What is needed instead is a deliberative discourse that is concerned
with a sense of public good, where norms for decision-making are held generally and
agreed upon by a collective.
The understanding of the complex, contingent choice enabled by the sequencing
of genes revealed in this legislative language thus more closely constitutes what
40.
Jürgen Habermas, The Theory of Communicative Action, trans. Thomas McCarthy, vol. 1
(Boston: Beacon Press, 1984), 23.
169
Giddens calls a “risk society” that is organized around the need to respond to risk.
41
The
language of legislative oversight arguments reflects the kind of public that Ulrich Beck
calls "political communities of risk."
42
In Beck's risk-centric world, "political
communities of risk" can anticipate and deal with the risks of modern life because these
communities or societies are structured around actions that are based on agreed-upon
norms. Within this framework, decision-making is shifted to a larger public, which in
turn gets to decide on the constraints under which individuals can make decisions. The
selection and presentation of risks so expands the space in which agency can be enacted
from individuals to a larger collective. In other words, the sense of individual agency
conveyed by the market discourse shifts to an agency that is lodged in the spaces of
communal publics. SACGT's document moves toward such an understanding, where
choices and decisions can be made through a communal deliberative process and where
publics constitute risk communities that anticipate and manage risks through agreed-
upon norms.
The document stops short of removing experts from this communal, deliberative
structure, however. Instead, the language of SACGT's document relies on expertise to
research and translate the potential and real consequences of genetic tests. References to
sites of expertise abound: the need for additional consideration, research, knowledge
41.
Giddens, "Risk and Responsibility." See also Beck, Risk Society.
42.
Ulrich Beck, Power in the Global Age: A New Global Political Economy, trans. Kathleen
Cross (Cambridge, MA: Polity, 2005), 220. See also Latour, Politics of Nature; Kerr and
Cunningham-Burley, "On Ambivalence and Risk."
170
gains and, most importantly, time, and the technical language of the report ("validity,"
"utility," complex genetic mutations) become central topoi on and through which
decisions need to be formed. Because genes are uncertain and contingent, knowledge
about genes is never static. Instead, knowledge about genes is shifting constantly so that
parameters of meaning need to be set rather than being extrapolated by the market
language's pandering to its customers' hopes and fears. This creates a necessary need for
expertise in evaluating and giving meaning to genetic test results, while individual
customers, the text implies enthymematically, cannot make prudent choices on their
own.
The passivity of the public is emphasized throughout the document's language.
Public consultation and involvement constantly are trumped by a paternalistic
protection meme: protecting the public and keeping it from making foolish decisions
where only time and additional research can provide more certainty becomes a common
thread. Passive reception of genetic education replaces individual or communal agency
in decision-making: "Thus, the public is best served [my emphasis] by ensuring both the
adequate oversight of genetic tests and the continued development of genetic tests."
43
If
the public is a passive recipient (both in content and grammatical form), then the
document's language casts experts as the active agents:
43.
Secretary's Advisory Committee on Genetic Testing, Enhancing the Oversight of Genetic
Tests: Recommendations of the SACGT (Bethesday, MD: National Institute of Health, 2000),
vii.
171
Because genetic education and counseling are essential features of many genetic
tests, organizations that pay for such tests should also pay for the necessary
education and counseling services. Because the need for such services is likely
to increase, concerns have been raised about the insufficient supply of health
professionals trained in genetics, and the need for greater efforts to train health
professionals in this field.
44
In other words, the pace of genetic science with its near daily findings and discoveries
creates a need for the reinforcement of existing norms.
SACGT's recommendations effected little change in the regulatory landscape. In
particular, a confluence of rapidly advancing genetic technology and a growing
acceptance of using the internet for everyday commerce by the American public
allowed for companies to emerge that offered DTC genetic tests over the internet. These
companies could grow outside the institutional purview that regulated issues of clinical
reliability, validity, privacy, and similar concerns in traditional medicine. What
remained missing from this report was an explicit discussion of DTC genetics. While
44.
Ibid. This dynamic is not unique to the U.S. The U.K. Department of Public Health
commissioned a report in 2002 that asked for a review of DTC genetic services in the U.K.
Here, too, the concept of a "public" becomes a hinge for U.K. legislative efforts to move toward
more oversight. And here too, emphasis soon shifts from public involvement to public
protection. The report, released in 2003, cautioned that while there is no "one size fits all"
solution, especially with the rapid expansion of complex genetic technology in the future, "the
best way of protecting the public is through a combination of legal controls on the sale of tests
and professional self-regulation of those who might supply tests." The protection meme runs
through the document. One point states that "[o]ne of the major issues we felt merited
consideration was the balance that must be sought between respecting that individuals are
entitled to health information about themselves and protecting vulnerable individuals from
inappropriate testing." Discussing the role of health professionals, the report asks that there are
"systems in place to protect patients from harm such as striking practitioners off professional
registers." Further, concerns about voluntarily regulated complementary therapists were voiced,
asserting that "the regulatory bodies that govern them have little power to protect patients." See
Human Genetics Commission, Genes Direct: Ensuring the Effective Oversight of Genetic Tests
Supplied Directly to the Public (London: U.K. Department of Health, 2003), 7, 12, 25, 27.
172
SACGT briefly acknowledged DTC genetic testing, it swept the issue aside with a
laconic label: the document called DTC tests "home brew tests" and quickly
determineed that "FDA regulations do not apply to laboratories developing home brew
genetic tests, because at present FDA has elected not to exercise its enforcement
authority."
45
Responding in part to these developments and in part to shortcomings in
the 2000 report, the SACGT released a second document in 2007. At this point, SACGT
had been renamed the Secretary's Advisory Committee on Genetics, Health, and
Society.
The 2007 SACGHS recommendations. The language of SACGT widened the
cautionary stance of prior privacy legislation from one primarily focused on privacy to
one that spans across a range of issues. But the practice of DTC genetics still largely
remained absent from SACGT's recommendations. DTC genetics makes a more
prolonged appearance in a new set of recommendations issued by the newly renamed
Secretary's Advisory Committee on Genetics, Health, and Society (SACGHS) in 2007.
The document analyzed here is a draft of the final document and was open for public
comment from November 5 to December 21, 2007. Entitled "U.S. System of Oversight
of Genetic Testing: A Response to the Charge of the Secretary of HHS," this revision of
the 2000 document has grown from 32 to 180 pages. It includes chapters on
"Background and Scope," "Systems and Oversight for Genetic Testing," "Technology
45.
Secretary's Advisory Committee on Genetic Testing, Enhancing the Oversight of Genetic
Tests, 11.
173
Used to Conduct Genetic Tests," "Analytical Validity, Proficiency Testing and Clinical
Validity," "Development and Evaluation of Evidence for the Clinical Utility of Genetic
Tests," and (before the conclusion) "Effective Communication and Decision Support."
Despite the added length and depth, many similarities between this report and the one
from 2000 remain. A few differences, however, are worth highlighting.
Initially, this document maintains the cautionary stance of its predecessor from
2000: "Direct-to-consumer advertising of genetic tests and consumer-initiated genetic
testing have the potential for adverse patient outcomes and cost implications for the
healthcare system. There is a gap in knowledge concerning the extent of this impact."
46

Further, it calls for "postmarket public health surveillance of genetic tests with a focus
on direct-to-consumer (DTC) tests."
47
The text goes on to explain the complexity with
which patients are faced, following the paragraph below with an extended case study of
how the complexities around BRCA1 and BRCA2 testing would have to be explained.
Regulation legitimizes medical practice; lack of regulation becomes problematic by
implication:
Clinical validity is certainly an issue of great complexity and importance in the
case of genetic testing. The issue becomes increasingly problematic for genetic
tests that are rapidly being marketed to a broad segment of the population
46.
Secretary's Advisory Committee on Genetic Testing, U.S. System of Oversight of Genetic
Testing, 23.
47.
Ibid., 43.
174
through direct-to-consumer (DTC) advising, despite the fact that clinical validity
has not been established in all population groups.
48
Already, the text distinguishes between the scientific, clinical complexity patients face
in clinical genetic testing and the added complexity they face in DTC testing. The latter
"becomes increasingly problematic." And already, a reliance on highly technical
language foreshadows the need for trained experts to translate clinical definitions and
measure the merits of risk.
How to communicate such complexity takes on central importance in the
document. The document concludes that
The translational process [of new technology into medical care] requires that all
parts of the healthcare system take an active role in ensuring the delivery of
needed services, while minimizing misuse, overuse, or inappropriate use (i.e.,
getting the right service to the right patient at the right time).
49

Here, the move from individual agency to public, deliberative agency and, finally, the
agency of expertise is completed. Emphasis shifts from giving primary responsibility to
the individual to the healthcare system around the individual client or patient. The
document goes to great lengths to discuss all the possible venues through which genetic
complexity can be made sense of for the lay individual, including: "healthcare
professionals without specialty training in genetics," "genetic professionals," "specialty
laboratories," "nongenetic laboratories," and "point-of-care genetic testing."
50
The
48.
Ibid., 90.
49.
Ibid., 138.
50.
Ibid., 145-156.
175
document emphasizes a number of institutional sites of meaning-making that interact
with the lay individual in making sense of (and making a decision in response to) the
planned purchase, transaction, and evaluation of a test. The importance of
communicative interaction with others for decision-making is underlined by the
recommendation for making applied genetics a valid practice by the standards of
institutionalized medicine:
An information management technique that is showing promise in complex
medical conditions is known as shared decisionmaking. Shared medical
decisionmaking is an attempt to balance the tension between evidence-based
guidance and respecting patient choice. The principles involved in shared
decisionmaking are:
• Shared decisionmaking involves at least two (often many more)
participants, as a minimum, the doctor and the patient;
• Both parties take steps to participate in the process of decisionmaking;
• Information sharing is a prerequisite to sharing of the decisionmaking;
and
• A decision is made and both parties agree to it.
51
All of these recommendations replace the frame for action and agency constructed by
the market language of DTC genetics providers with at least one intermediary
institutional site of meaning-making. And even though communal, deliberative forms of
decision-making are emphasized, at least one party must be an actor within a traditional
space of medical expertise. Throughout these documents, the language precludes the
very possibility of locating primary agency and primary responsibility with the
individual. The range of expertise required to make sense of and to act appropriately on
genetic information, the argument goes, requires intermediary experts.
51.
Ibid., 157.
176
The reality of the DTC genetics market did not and does not support the
recommendations outlined by SACGHS, however. DTC genetic testing remains a
booming business where the expert intermediaries called for by SACGHS are left
behind in favor of anonymity, privacy, convenience, and cost-efficiency. But legislative
discourse is not alone in voicing its opposition to the unrestricted market reign over
DTC genetic services. Sparse as they may be, oppositional or at least cautionary voices
against the market practices of DTC genetics appear outside the purview of legislation
as well. The next section explores one of these sites: medical organizations.
Medicine
Legislation is not the only site to notice DTC genetics. Because of the close ties
between a market-driven field of (particularly health-related) DTC genetics and existing
institutions of healthcare and medicine, some argue that health-related genetic services
should be administered through the existing health care system.
52
This, the argument
goes, would ensure not only that legislative burdens are met (through informed consent
processes, HIPAA assurance, privacy guarantees, or CLIA compliance) but also that
personal physicians or genetic counselors could inform patients about the risks in
52.
See e.g., Jill Fonda, genetic counselor, Kelly Ormond, former NSGC president and director
of Northwestern University's genetics counseling program, Scott Weissman, Familial Cancer
Risk Counseling Group co-chair, all as quoted by Sandra G. Boodman, "Too Much Information:
Results of Home DNA Tests Can Shock, Misinform Some Users," Washington Post, June 13,
2006, http://www.washingtonpost.com/wp-dyn/content/article/2006/06/12/
AR2006061201104_pf.html (accessed June 26, 2007, archived by WebCite at http:/
/www.webcitation.org/5PtOqHyhE).
177
person and convey difficult test results in the context of existing health care practices.
These voices were loud enough for the board of directors of the American College of
Medical Genetics to recommend: "At the present time, genetic testing should be
provided to the public only through the services of an appropriately qualified health care
professional."
53
The Case for DTC Genetics in Medicine
Among the major medical and healthcare institutions, the American College of
Medical Genetics seems most aware of and concerned about DTC genetics: three issue
briefs published by the organization on DTC genetics surpass the lack or near lack of
attention devoted to DTC genetics by most other medical organizations. Neither the
American Medical Association nor the Association of American Medical Colleges, nor
large private medical organizations like Kaiser Permanente, Cedars-Sinai, and
BlueCross, has published policies or statements about direct-to-consumer genetics.
54

This is not to say that none of the major medical institutions is concerned with applied
genetic technology. On the contrary, genetics labs are well-established in most major
hospital networks and are used increasingly for diagnostic purposes. Issues of medical
53.
American College of Medical Genetics, "ACMG Statement on Direct-to-Consumer Genetic
Testing," Genetics in Medicine 6, no. 1 (2004): 60.
54.
The AMA does publish peer-reviewed articles on DTC genetic testing in its journal, and it
does discuss genetic testing in general in various statements. As an organization, however, it
lacks the kind of direct statements or briefs published by the ACMG, and to date, the AMA's
direct involvement with issues of DTC genetics remains limited to more general issues of direct
advertising.
178
and clinical genetics thus are well represented in the discourses of these organization.
But these labs are operated within the clinical context of the organization that offers the
tests. The practice of customers bringing results from DTC genetic tests into the clinical
setting for followup consultation remains outside the purview of these genetic testing
arrangments.
The omission of DTC genetics is problematic because despite its direct-to-
consumer model, DTC genetics (in particular health-related testing) remains closely tied
to traditional healthcare and medicine. DTC genetic tests emphasize the importance of
following up positive results within the traditional healthcare system. Typical is the
injunction, for example, that once the test results are reported, the client should "make
sure to tell your doctor about your test results and give him or her a copy of your Lab
Report in Chapter 1 of your report."
55
The reason for this cross-institutional practice is
the same discussed in the previous chapter: in most cases, genetic tests reveal
susceptibility to rather than presence of a disease, and the diagnosis-treatment gap
makes genetic testing useful for diagnosis but not for the subsequent treatment of a
potential future disease. Until genetic therapy becomes possible (and available in a DTC
model), genetic testing only can be the first step of a larger medical practice. Followup
steps require test results to be taken into the institutions of traditional healthcare
(whether a primary physician or a specialized clinic) for verification and preventative or
therapeutic measures.
55.
DNA Direct, "Hemochromatosis Report."
179
The practice of crossing institutional lines between the market and medicine
affects not only individual clients but also healthcare providers. Patients that come to a
healthcare provider with pre-sequenced genetic results in hand have a different set of
expectations, range of knowledge, questions, and understanding of what their visit
should yield than traditional patients. Moreover, patients who are savvy about DTC
genetics (because they have undergone testing before or are influenced by advertising)
may ask more frequently for a genetic evaluation. This poses challenges to healthcare
providers: they need to be able to understand the complexities of genetics, know how to
counsel the patient (in case the provider of the DTC genetic test has not done so
adequately), and recognize how to adjust to a different patient-doctor dynamic in terms
of expertise, preexisting knowledge, and expectations of future outcome. Whether these
changes parallel the "move toward consumerism" driven by WebMD and similar online
resources toward which the "American health insurance marketplace"
56
is heading
remains to be seen. But it is not difficult to draw parallels between the increased
empowerment of patients through market forces like the internet or prescription drug
advertising (for better or for worse) and what is taking place in the DTC genetics
market.
Crossing institutional boundaries between the market-centered practice of DTC
genetics and traditional healthcare and medical practices is not restricted to health-
56.
Grace-Marie Turner, "Why is Consumer-Directed Health Care (CDHC) Growing Rapidly in
America?," Medscape General Medicine 7, no. 3 (2005): 42.
180
related genetic testing. Ancestry test results often are closely related to specific
diseases.
57
Consider the following hypothetical examples. Client X could find out
through a genetic ancestry test that part of her ancestry can be traced back to a
population that is at high risk for a specific disease. With that knowledge, client X could
go through another genetic test for that disease (and, if positive, take the results into the
clinical setting for preventative treatment) or directly into traditional medical diagnosis
to determine whether she carries the disease. Client Y, whose father carries a genetic
mutation for a disabling and life-altering disease, could find out through a relational test
that he is not, in fact, related to his father by blood. If one of client Y's parents had a
medical condition for which client Y underwent preventative treatment or preemptively
took drugs, he now could stop doing so. Or, if he suffered from specific symptoms
associated with either of his parents, he now would need to reassess his medical
situation. At the same time, both clients X and Y would have to deal with the newly
gained and possibly difficult knowledge of having a different heritage and different
paternal relationships than they previously knew and lived with (this issue will be
discussed in the next chapter). These hypothetical scenarios make clear that non-health
genetic services, too, frequently need to rely on the institutional practices and spaces of
traditional medical and healthcare settings. Despite the often necessary crossing of
institutional boundaries between market and medicine/healthcare, few medical
57.
Kenneth Offit, "Genomic Profiles for Disease Risk: Predictive or Premature?," JAMA 299,
no. 11 (2008): 1353-55.
181
organizations deal with the issue of DTC genetics. The notable exception is the
American College of Medical Genetics.
The American College of Medical Genetics Statements
To date, the American College of Medical Genetics (ACMG) is the most
involved actor in the institutional space of medicine and healthcare to acknowledge the
practice of DTC genetics. Over the years, ACMG has published three brief statements
that directly address DTC genetics. These statements in fact played a part in pushing for
Senate hearings on DTC genetics discussed later in this chapter: the chairman of the
hearings indicated in his opening that caution must be applied when trying to reap the
benefits of DTC genetic testing, citing ACMG as having "advised the public to avoid
home DNA tests."
58
ACMG was incorporated in 1991 with the intention of providing a
national forum for genetic practitioners ranging from genetic counselors to researchers
and providers of genetic services. It issues guidelines on laboratory standards, genetic
practices, and policy issues, and it publishes a well-regarded journal, Genetics in
Medicine. ACMG strives to provide "education, resources and a voice to for the medical
genetics profession" and to "make genetic services available to and improve the health
58.
Senate Special Committee on Aging, At Home DNA Tests: Marketing Scam or Medical
Breakthrough?, 109th Cong., 2nd sess., 2007, 1.
182
of the public."
59
Despite these objectives, and despite the impressive range of resources
it provides to genetic practitioners, ACMG's only formal mention of DTC genetics
comes in the form of three formal statements: one in 2004 published in its journal, the
second in 2007 and promoted on its website, and the third in 2008, also available on its
website.
The 2004 statement. The 2004 statement is merely a paragraph long. Entitled
"ACMG Statement on Direct-to-Consumer Genetic Testing," it opens with an analogy,
stating that "genetic tests of individuals or families for the presence of or susceptibility
to disease are medical tests."
60
The analogy preempts arguments that would associate
DTC genetic technology with informational rather than health or medical technology,
an argument that has been marshaled successfully on the state level to put oversight
over DTC genetics on hold. Furthermore, the designation of "medical test" situates DTC
genetics firmly within the domain of preexisting sites of expertise. As the statement
says, "genetic testing should be provided to the public only through the services of an
appropriately qualified health care professional."
61
This is because "due to the
complexities of genetic testing and counseling, the self-ordering of genetic tests by
59.
American College of Medical Genetics, "Mission Statement," 2007, http://www.acmg.net/
AM/Template.cfm?Section=Mission_Statement&Template=/CM/
HTMLDisplay.cfm&ContentID=2415 (accessed December 20, 2007, archived by WebCite at
http://www.webcitation.org/5UEfQA4Zd).
60.
American College of Medical Genetics, "ACMG Statement on Direct-to-Consumer Genetic
Testing."
61.
Ibid.
183
patients over the telephone or the Internet, and their use of genetic 'home testing' kits, is
potentially harmful."
62
Despite its brevity, the language of this statement explicitly seeks
to remove agency from individual and instead situate it within preexisting sites of
expertise. The followup to the 2004 statement does more of the same.
The 2007 statement. In 2007, ACMG released a brief statement that followed up
on their prior statement published in 2004. This new statement, entitled "Medical
Genetics: Translating Genes Into Health," argues:
More genetic tests are available than ever before, ranging from home DNA test
kits, tests that can help determine a person's predisposition to certain diseases,
and even home paternity tests. Along with greater availability of genetic tests
and increased Direct-to-Consumer (DTC) advertising, however, come increased
risks to the public.
63

ACMG's solution to this increased risk from DTC genetics is to shift agency to medical
professionals: "The American College of Medical Genetics (ACMG) advises consumers
to involve a genetics expert in the process of genetic testing."
64
And while they give
credence to the benefits of DTC genetic testing ("We applaud efforts to educate the
public about the availability of genetic testing resources to help identify and manage
those at increased risk for serious diseases"), responsibility for translating DTC genetics
62.
Ibid.
63.
American College of Medical Genetics, "Statement on Direct-to-Consumer Genetic
Testing," 2007, http://www.acmg.net/AM/Template.cfm?Section=News_Releases&Template=/
CM/HTMLDisplay.cfm&ContentID=2394 (accessed December 19, 2007, archived by WebCite
at http://www.webcitation.org/5UD82mD3W).
64.
Ibid.
184
into lay practices must remain vested within the existing structures of medical authority
and expertise:
But it is absolutely critical that the public realize that genetic testing is only part
of the process. Genetic testing should be accompanied by appropriate genetic
counseling, both in the consideration of whether to initiate testing and in the
interpretation of test results. Trained genetic professionals, including M.D. and
PhD geneticists and certified genetic counselors, should be sought out to
perform this important role.
65
Institutionally anchored titles that connote expertise (M.D., Ph.D.) and accompanying
job labels (genetic professional, genetic counselor) both serve to establish the need for
expertise when it comes to decision-making. The consequences of making decisions
through other means are framed as dire: "There are a number of risks and potential for
harm if a genetics professional is not involved in the genetic testing."
66
The public risk commonplace used to justify oversight in legislative discourse
reappears here. Increased use of these tests, the argument goes, endangers the public.
DTC genetics represents a risk to the public because it exposes lay individuals to the
full range of complexity and, thus, risk that comes with the practice of DTC genetics
without making available the proper channels of translating and making sense of genetic
complexity. As was true in legislative discourse, this protectionist topos turns the tables
on the market discourse of DTC genetics. There, the practice of DTC genetics was
shown to be beneficial to public health because it could empower lay clients with the
65.
Ibid.
66.
Ibid.
185
knowledge of what their genes held in store for their future. Here, the uncertainty of
DTC genetics is shown to do the opposite: it confuses clients and leaves them unable to
judge for themselves how to make sense of genetic risk and what the best possible
action should be. Thus, the 2007 statement expounded the same themes the brief 2004
statement outlined. But only one year after the publication of this last statement, ACMG
published yet another advisory.
The 2008 statement. Little new information is added in this new statement. It
opens with a renewed call for caution: "With ongoing genetic discoveries and
improvements in technology, more genetic tests are available than ever before."
67
The
statement then outlines five brief points that "should be considered minimum
requirements for any genetic testing protocol: "A knowledgeable professional should be
involved in the process of ordering and interpreting a genetic test;" "The consumer
should be fully informed regarding what the test can or cannot say about his or her
health;" "The scientific evidence on which a test is based should be clearly stated;" and
"The clinical testing laboratory must be accredited by CLIA, the State and/or other
applicable accrediting agencies."
68
Thus, the 2008 statement expands on the theme of its
predecessors: the need to shift the agency and responsibility for choices and actions
67.
American College of Medical Genetics, "ACMG Statement on Direct-to-Consumer Genetic
Testing," 2008, http://www.acmg.net/AM/
Template.cfm?Section=Policy_Statements&Template=/CM/
ContentDisplay.cfm&ContentID=2975 (accessed May 6, 2008, archived by WebCite at http:/
/www.webcitation.org/5XcoxpEV8).
68.
Ibid.
186
from the preferences of the lay individual into the preexisting space of expertise
provided by traditional healthcare institutions.
Medical organizations like ACMG are not the only ones to make that argument.
The concept of public risk, and the corollary call for protecting the public brought a
third institutional site into the communicative field of DTC genetics. Public advocacy
groups, traditionally tasked to raise public awareness about issues that could affect
publics negatively, have had a strong presence in the field of general genetics. The
advent of DTC genetics garnered little attention from these groups, with a few notable
exceptions. The following section discusses how public advocacy groups participate in
the discourse of DTC genetics.
Public Advocacy
Public genetic advocacy groups provide support for people with genetic
conditions. Initially, these groups gave individuals with specific genetic diseases a
support group in which to associate with others suffering from the same genetic disorder
and to share information about the disorder and its consequences.
69
In the 1950s, for
example, groups like the Little People of America, the Cystic Fibrosis Foundations, and
the National Tay-Sachs and Allied Diseases Association provided support and
information to people with specific genetic disorders. With growing awareness of
69.
See e.g., Sharon F. Terry and Mary E. Davidson, "Empowering the Public to Be Informed
Consumers of Genetic Technologies and Services," Community Genetics 3, no. 3 (2000):
148-50.
187
genetic diseases, these groups became involved in research and public advocacy as well.
As the number of known genetic disorders increased, the number of groups that focuses
on specific genetic conditions has skyrocketed. This development has led to new genetic
support groups that network many of the smaller, more specialized support groups.
Eventually, new groups like the Alliance of Genetic Support Groups (now the Genetic
Alliance) not only have provided a central node for other groups to interact,
70
but have
became central repositories for public information, advocacy, and often even policy
intervention for issues of genetics. This development has come as a direct response to
developments in genetic science and technology: once genetic technology had reached a
state where specialized clinics could begin to offer genetic testing for a select few
diseases, and genetic science had progressed to a point where it dealt with issues of
human-animal hybrids, cloning, and genetic therapy, expanding the scope of some of
the larger genetic advocacy groups beyond the self-help function of earlier groups
became an increasing necessity.
The Scope of Genetic Public Advocacy
The aim of these new advocacy groups was education of the public and
intervention in policy-level decision-making. Genetic science and technology, they
argue, comes with great benefits, but it also brings with it a high potential for misuse.
70.
The Genetic Alliance, for example, boasts of connecting "more than 600 advocacy
organizations serving 25 million people affected by 1000 conditions." See Genetic Alliance,
"About Us," 2007, http://www.geneticalliance.org/ws_display.asp?filter=about (accessed April
29, 2008, archived by WebCite at http://www.webcitation.org/5XRqTcBSP).
188
Three of the largest public advocacy groups in genetics -- the Center for Genetics and
Society (http://www.geneticsandsociety.org), the Genetic Alliance (http:/
/www.geneticalliance.org), or the Genetics & Public Policy Center (http:/
/www.dnapolicy.org) -- respond to these developments in applied genetic technology.
Their primary focus is high-level research and policy issues, however. Cloning,
chimeras and hybrids, pre-natal screening, eugenics, and other macro-level concerns
occupy center stage. The Genetic Alliance seeks to "build capacity in advocacy
organizations and to educate policymakers by leveraging the voices of individuals and
families."
71
The Center for Genetics and Society believes: "There has been far too little
democratic influence on research priorities, oversight and regulation; about the kinds of
genetic, reproductive and biomedical products that may eventually be commercialized;
or about their likely social consequences."
72
The Genetics & Public Policy Center
"surveys public attitudes about genetics issues, conducts analyses of the existing
regulatory landscape, monitors the transition of genetic applications into clinical
practice, and posits options and likely outcomes of key genetics policies."
73
71.
Ibid.
72.
Center for Genetics and Society, "Overview," 2008, http://www.geneticsandsociety.org/
article.php?list=type&type=59 (accessed April 29, 2008, archived by WebCite at http:/
/www.webcitation.org/5XRsSYc7Q).
73.
Genetics & Public Policy Center, "Mission," 2006, http://www.dnapolicy.org/
about.mission.html (accessed April 29, 2008, archived by WebCite at http:/
/www.webcitation.org/5XRrDhc4r).
189
More micro-level concerns garner some attention, too. Discussions of privacy
issues frequently appear in newsletters and on websites. Other issues include perceived
risks of having a life-altering disease that would be heightened by an awareness of
genetic mutations that predispose to that disease. And concerns about access to critical
genetic diagnostic technology -- and later, genetic therapeutic technology -- that would
be reserved for only a few are evident. From a market perspective, there are worries that
genetic research could benefit small corporate segments of society instead of a broad
public.
Advocacy groups aim to create awareness of these issues and to educate the
public about genetic technology and the role it can play in someone's life. Raising
public awareness extends to policy intervention. Most of the advocacy groups in the
U.S. are active in the policy realm, trying either to educate policymakers about the
possibilities and dangers of genetic technology or actively writing policy statements
themselves. These efforts rarely center on DTC genetics specifically, however. More
often, they revolve around topics like stem cell research, in-vitro genetics, hybrids/
chimeras, various forms of cloning, and genetic engineering/therapy, that are more
widely represented in popular press discourse.
This is not to say that public advocacy groups ignore DTC genetics. But their
efforts generally are limited to linking to press articles on DTC genetics or to existing
policy statements by SACGHS or other legislative bodies. The Center for Genetics and
Society's newsletter, for example, contains not a single mention of DTC genetics
190
between September, 1999, and January, 2007. The Genetic Alliance remains similarly
quiet about the growing practice of DTC Genetics. The Genetics & Public Policy Center
is more active in voicing its views on DTC genetics. Short "issue briefs" provide an
outline of the field and a comprehensive list of DTC genetics providers lists active
businesses and their services. The Genetics & Public Policy Center exemplifies the
necessary institutional boundary-crossing between legislative discourse and the
discourse of public advocacy groups. Kathy Hudson, director of the Genetics & Public
Policy Center, was among the participants in Senate hearings on at-home genetic testing
(discussed below).
Addressing DTC Genetics: The Genetics & Public Policy Center's Issue Brief
The Genetics & Public Policy Center attends more to DTC genetics than other
public advocacy groups. Because "recent years have seen a proliferation of
commercially available genetic tests, both for identifying health-related genes and for
non-health-related applications, such as forensics and genealogy,"
74
it published an issue
brief on its website on July 25, 2006. The short, 2-page brief, entitled "Direct-to-
Consumer Genetic Testing: Empowering or Endangering the Public," discusses some of
74.
Genetics & Public Policy Center, "Direct-to-Consumer Genetic Testing: Empowering or
Endangering the Public?," 2007, http://www.dnapolicy.org/images/issuebriefpdfs/
2006_DTC_Issue_Brief.pdf (accessed April 28, 2008, archived by WebCite at http:/
/www.webcitation.org/5XQaEQEcX).
191
the benefits of this practice but also a number of criticisms that are acerbated by the
uncertain legislative system of oversight over DTC genetics:
critics argue that consumers are vulnerable to being misled by advertisements
and lack the knowledge to make appropriate decisions about whether to get
tested or how to interpret the results. Consumers with little knowledge of
genetics might have difficulty distinguishing between tests widely used and
accepted by medical professionals (such as those for mutations causing cystic
fibrosis), and those whose validity is unproven in the scientific literature (such
as those purporting to determine propensity to depression or an appropriate skin
care regimen). Advertisements may also underemphasize the uncertainty of
genetic testing results, or exaggerate the risk and severity of a condition for
which testing is available, thus increasing consumer anxiety and promoting
unnecessary testing.
75
As was true with the language of medicine, the cautionary tone about public risk
appears ("consumers are vulnerable," "might find difficulty") alongside an emphasis on
the language of expertise ("mutations," clinical "validity," and "scientific literature" as
the benchmark for prudent choice). These risks are brought about by complexity and,
the text argues, would be ameliorated if testing companies required clients to use a
doctor for ordering and analyzing tests. Even though many doctors lack an appropriate
knowledge in genetics, "health care providers have the opportunity to guide patients
away from unneeded tests and to clarify the results when they arrive."
76
Not only would
doctors help patients avoid costly testing, doctors could help them avoid more serious
risks as well: "Taking tests without a provider’s supervision increases the likelihood of
harmful outcomes to consumers, ranging from wasted money to loss of genetic privacy
75.
Ibid.
76.
Ibid.
192
to basing major decisions — such as whether to have a child — on faulty
information."
77

Yet, only a handful of companies require a licensed physician to act as an expert
counselor. The issue of unlicensed or untrained healthcare providers, the document
implies, ought to be regulated on the federal policy level. "Whether health care provider
authorization is required to obtain a genetic test, or any laboratory test, is the province
of state law." The existing reliance on state law leads to lax federal regulation. Neither
the FTC (for advertising) nor FDA (for medical testing products) are clear about their
responsibility (and ability) to regulate this market. These regulatory shortcomings lead
the document to conclude:
It would be a mistake, and ultimately an unsuccessful endeavor, to focus efforts
on remedying the potential harms from DTC tests without considering the entire
regulatory context. Without a system in which an upfront expert evaluation can
be made with respect to the validity of genetic tests, it will be difficult if not
impossible to make rational decisions about who can and should order the test
and receive the results, and what claims are appropriate in advertising.
78
The theme outlined in the SACGT and SACGHS documents (particularly in the latter)
reappears here. Decision-making needs to take place across a number of institutional
sites; the power and responsibility for making choices thus must be distributed beyond
just the individual. Making sense of complex risks and benefits cannot be left to
business and customers only. This document, however, favors interactions within the
77.
Ibid.
78.
Ibid.
193
medical setting. Legislation, the argument goes, should ensure that doctors have a say in
the process. But the role of legislative policy is merely oversight over the process, not
active interference in how the complex science ought to be translated into individual lay
practices. Instead, successful information, transaction, and evaluation of a genetic test
should take place through physicians. The brief thus moves quickly through situating
agency within public legislative discourse and then firmly situates it within the domain
of existing spheres of expertise. Its emphasis on "rational decision" favors the "health
care providers [who] have the opportunity to guide patients."
79
Despite differences, federal legislation, medicine, and public advocacy share a
common ground, cautioning against the unrestricted ability of the market to offer
applied genetic technologies to lay customers. They also share a common stage. As
concerns about public uses of health-related genetic services became more pertinent but
discussion of DTC genetics in particular remained sparse, Congress took note of DTC
genetics as an increasingly large subindustry of applied genetics. In 2006, the House of
Representatives scheduled hearings that for the first time brought together legislators,
representatives of public advocacy groups, medical experts, and industry insiders to
discuss the practice of DTC genetics and to form a common ground from which to
regulate and control the use of applied genetic technologies by lay audiences.
79.
Ibid.
194
Putting the Actors on the Stand: The 2006 Senate Hearings
Six years after the release of the original SACGT document, on July 27, 2006,
the persistent lack of effective federal oversight over DTC genetics led the Senate's
Special Committee on Aging to call for hearings on DTC genetic tests. The hearings,
entitled "At Home DNA Tests: Marketing Scam or Medical Breakthrough" and running
218 pages long, were designed to take stock of a DTC genetics industry that had grown
outside the oversight of government and of medical institutional practices, and to assess
its risks and benefits. In his opening statement, Chairman Gordon Smith (R-OR) hoped
that the hearings would "explore the regulatory and scientific issues relating to direct-to-
consumer genetic tests."
80
To that effect, the hearings featured a cast of government
regulators and leaders in the DTC genetics industry: Kathy Hudson (director of the
Genetics and Public Policy Center), Gregory Kutz (managing director of the
Government Accountability Office), Steven Gutman (director of the U.S. Department of
Health and Human Services), Thomas Hamilton (director, Center for Medicaid and
State Operations), Howard Coleman (founder and CEO of Genelex), Kristopher King
(CEO of Suracell), Rosalynn Gill-Garrison (Chief Science Officer of Sciona), Carol
Reed (senior VP and Chief Medical Officer, Clinical Data Inc.), and Narasimhan
Ramarathnam (president of Genox Corporation). These remain the only official
published government hearings in the U.S. to explicitly and exclusively focus attention
on DTC genetics.
80.
Senate Special Committee, At Home DNA Tests, 1.
195
The Market Actors
As expected from the emphasis on privacy in earlier legislative documents, part
of the hearings focused on privacy. But while prior discourse on genetic privacy was
cautionary in nature (as evidenced by Executive Order 13145 and GINA), voices from
inside the DTC genetics industry turn the tables here. In his prepared statement,
Genelex CEO Howard Coleman asserts: "It is important for citizens to continue to have
this right [to using DTC genetic services], given the sensitivity of genetic information
and the lack of confidence people may have in the ability of the healthcare records
system to protect their privacy."
81
Here, the specter of an aging healthcare system
unable to deal with the new requirements of genetics is summoned as an enthymeme:
the stability of the healthcare system in light of rapidly expanding genetic technology is
questioned as an appropriate venue of communicative transactions between the
laboratories that provide these tests and their clients.
Coleman's statement stands in direct contrast to what the SACGHS would
recommend a year later. Coleman's argument reframes norms of decision-making by
necessarily involving individual clients in the decision-making process: lack of trust in
the existing institutional structures of the healthcare system undermines any reliance on
these existing structures as grounds for decision-making. Instead, individuals should be
able to make their own decisions about whether and how they want to make use of this
new genetic technology. This language mirrors the market discourses. It structures a
81.
Ibid., 96.
196
space in which uncertainty undercuts the determinism of genes and seeks to shift agency
to the individual client empowered to make judgments from his or her perspective,
preference, and set of values.
Coleman was not the only voice to make a case for DTC genetics based on an
argument for privacy. Kristopher King, CEO of Suracell, reiterates the importance of
privacy protection for genetic services that deal with issues of nutrigenetics and lifestyle
rather than direct medical relevance. Sciona's Chief Scientific Officer, Rosalynn Gill-
Garrison also highlights the centrality of privacy protection for genetic services,
alluding to the benefits of being able to bypass the health care system and make sure of
genetic technology in one's own private space.
The Nonmarket Actors
The hearings went beyond privacy, however, and frequently critiqued the market
language's emphasis on individual agency and empowerment. A central concern voiced
during the hearings was the ambiguity conveyed by the market's language. Analysis of
the market language has shown that providers of DTC genetic services use a range
rhetorical strategies to symbolically frame (and separate) the relation between the
presence of a gene's mutations and the presence of disease through a frame of
contingency. This strategy has not escaped the government regulators giving testimony
at the hearings. Consider, for example, testimony by Howard Kutz, managing director
of the Government Accountability Office. Kutz repeatedly chastises providers of DTC
197
genetic services for the vague and ambiguous language they use to communicate their
test results:
The results we received from all the tests we purchased mislead the consumer by
making health-related predictions that are medically unproven and so ambiguous
that they do not provide meaningful information to consumers [...] For example,
many people "may" be "at increased risk" for developing heart disease because
of a variety of factors, so such an ambiguous statement could apply to any
human that submitted DNA.
82
Under a heading of "Medical Predictions Are Also Meaningless." Kutz further argues:
"Even if the predictions could be medically proven, the way the results are presented
using ambiguous language renders them meaningless. For example, it is unclear what is
meant by a 'damaged' gene."
83
The problematic sense of linguistically shaped uncertainty Kutz emphasizes
refers to the kind of language found in the test result reports of the market discourse,
which state, for example, that risk "depends in part on your perspective." The results
draw from an old adage and use it to convey a contextualized understanding of genetic
risk:
We've all heard the of the difference between thinking a glass is half full or half
empty. Both are true: how you feel about a situation depends in part on your
perspective, that is, how you look at it. The same is true when you're thinking
about risks.
84

This language may move genetic risk from a certain to an uncertain ground for
82.
Ibid., 11.
83.
Ibid., 19.
84.
DNA Direct, "Hemochromatosis Report."
198
decision-making, where risks vary with context. But, Kutz argues, the language goes
too far in trying to inject uncertainty. Saying, even if metaphorically, that the glass is
both full and empty cannot provide the necessary grounding for prudent decision-
making in response to a genetic test. A sentence like "once you know what these
numbers [the probabilities of contracting a disease after testing positive for a mutation]
mean, you can begin to understand how they describe your personal risk" thus leads to
confusion more than to the kind of empowered agency providers of DTC genetic
services hope to convey to their clients.
Kutz was not the only one to speak in favor of increased oversight during the
hearings. Among the most assertive voices are those from genetic public advocacy
groups. Testimony by Kathy Hudson, director of the Genetics & Public Policy Center,
emphasizes the institutional differences between how the market talks about DTC
genetics and what she perceives to be the realities of how people use DTC genetics.
While market discourse primarily articulates DTC genetics as a mode of individual
empowerment, Hudson locates the prevalent use of genetic testing in the realm of
medical care.
85
In so doing, Hudson juxtaposes the two spaces. Genetic tests, she argues,
were "once the province of esoteric testing laboratories" but now are "becoming an
increasingly important part of medical care."
86
85.
Senate Special Committee, At Home DNA Tests, 33.
86.
Ibid.
199
This juxtaposition is critical. The term esoteric situates DTC genetic testing in
the epistemological domain of the individual. Etymologically, esoteric pertains to a
space inside or within. It connotes a small, private, inner circle whose epistomology is
unique to the circle and grounds for decision-making emerge out of this privatized
system of understanding.
87
If DTC genetics historically was practiced in the domain of
the esoteric, Hudson argues, then the responsibility for actions that result from these
tests were indeed left up to the individual. Consequently, making sense of the
complexities and consequences of genes and of genetic science could take place only in
the interactions between the provider of the genetic test and the lay client. These
conditions are historical and since have changed, however. Hudson makes a diachronic
argument that these prior conditions increasingly are pushed aside in favor of new ones,
where the current (and even more so future) generations of genetic tests will have a very
real impact on individual health practices. The term medical care introduces a space for
meaning-making and decision-making that shifts from individuals who themselves set
private norms of decision-making to larger and more public institutional norms of
decision-making that are grounded in expertise rather than the private preferences and
beliefs of individuals. Unlike esoteric, the term medical care connotes a set of
commonly agreed upon and held standards of decision-making. Within the frame of
87.
Oxford English Dictionary. Aristotle, for example, categorized his esoteric writings as
written for those inside the lyceum, in contrast to the exoteric writings. See Aristotle,
Nicomachean Ethics, xiv; Carol Poster, "Aristotle's Rhetoric Against Rhetoric: Unitarian
Reading and Esoteric Hermeneutics," American Journal of Philology 118, no. 2 (1997): 219-49.
200
medical care, actions and decisions cannot be made individually: their consequences
can affect others (as certainly is the case with genetics and its dimensions of social
complexity) and thus cannot be left open to each individual. Instead, they must be
regulated as a group.
The shift from small, esoteric practice to a larger, public one is necessary
because, as Hudson argues, to leave grounds for decision-making within the esoteric
would endanger the public. "Inadequacies in the current oversight of genetic testing,"
she argues, "threaten the public's health."
88
This threat manifests in the way existing
legislation becomes mapped onto consumer-targeted genetic technology. CLIA
regulations, designed to ensure the accuracy and reliability of laboratory testing, she
argues, do not cover all or even most at-home genetic tests -- despite the fact that
genetic testing is classified as "high complexity" and calls for strict CLIA compliance.
89

Some genetic testing labs, she notes, voluntarily comply with CLIA certification. But
others do not, and both consumers and doctors are left uncertain about the clinical
reliability of the testing lab. The call for stricter enforcement of CLIA, and more so for
a new speciality category under CLIA that targets genetic testing specifically (among
other specialities like diagnostic immunology and microbiology), would link
governmental oversight with scientific reliability. CLIA is designed to ensure the
quality of laboratories, not necessarily clinical validity; nonetheless, a CLIA
88.
Senate Special Committee, At Home DNA Tests, 34.
89.
Ibid., 35.
201
certification is seen as as a seal of certainty, ensuring if not guaranteeing the accuracy of
test results. Government oversight, Hudson states, structures grounds for decision-
making that are stable and scientifically certain, at least to the degree that CLIA makes
possible. She contrasts this sense of certainty to the many genetic testing labs that
operate outside CLIA: because laboratory quality cannot be determined, it remains
uncertain whether a test is clinically valid, or whether the results are accurate. Hudson
argues that if we continue to ground decisions over the use of DTC genetic technology
in the epistemological realm of the esoteric, choices will be made outside the reliable
space of science assured by governmental oversight.
Hudson, too, thus initially moves the agency for choice from individual to public
and then toward a sphere of expertise. Her use of science as a topos of expertise that
could generate arguments for additional oversight appears in the arguments of others,
too. Aforementioned Gregory Kutz, managing director of the Government
Accountability Office, draws similar analogies between what constitutes inadequate and
adequate standards for evidence used for decision-making in a DTC genetics practice.
Kutz's testimony shows that genetic services that operate outside public oversight
cannot provide the evidentiary standards needed to ensure good decision-making.
"Despite the implications that these predictions are based on the DNA submitted, none
of the results we received contained scientific support to assist the consumer in
evaluating their credibility."
90
Kutz, like Hudson, argues from the authority of science.
90.
Ibid., 19.
202
Like medical care before, science or scientific support stand in contrast to esoteric.
Science connotes generally accepted standards for evidentiary rigor. As a topos of
expertise and authority, it anchors a language that can assure and ensure a stable and
safe ground for decision-making. Kutz's enthymeme is no different from Hudson's: to
ensure understanding of complex genetic science and enable prudent decision-making
for lay clients, the practice of DTC genetic testing requires expert intermediaries to
negotiate the communicative processes between the laboratories providing the tests and
the lay clients using them.
The 2006 Senate hearings represent a text where the discourses of most, if not
all, institutional sites that have a stake in DTC genetics come together. For the three
major nonmarket actors (legislation, medicine, and public advocacy), these hearings are
one of the rare places where legislators, medical experts, and representatives of public
advocacy groups could make statements explicitly about DTC genetics. While the
hearings had little effect on regulating the DTC genetics market, they did provide
representatives of both market and nonmarket institutional actors a stage for jawboning
about their support or concerns with DTC genetic testing. In terms of situating agency,
the few short passages highlighted here reinforce what the prior analysis of legislative
language asserted: that nonmarket actors seek to re-situate the locus of agency for
making and enacting choices in regards to DTC genetics from the preferences of
individuals to a preexisting site of expertise that consists largely of the healthcare
system and is regulated by legislation.
203
The texts drawn from the nonmarket actors in legislation, medicine, and public
advocacy highlight that the language of nonmarket actors often resembles the dominant
market language of DTC genetics. Their core objectives are similar to those of the
market. Responding to the rhetorical problem of having to frame genetic complexity in
relation to social practice and, in effect, translate complex genetics to lay audiences,
legislative, medical, and other discourses seek to create a language that can situate the
complexities of genetics within the contexts and lives of lay audiences. How these
discourses translate scientific complexity into lay practice differs markedly from DTC
genetics businesses, however. They differ primarily in terms of where they situate
agency and responsibility for the power to make choices and evaluate actions. Thus, the
languages of nonmarket actors share a common ground, both in the way in which they
reference each other and in how they re-situate the locus of agency away from the
individual and toward a space of preexisting expertise. Consequently, the languages of
nonmarket actors clash with the market language in where they situate agency as a
ground for making and enacting choices. The next section argues that these clashing
loci of agency result in communicative predicaments.
Predicaments of Institutional Polysemy: Clashing Conceptions of Agency
The struggle between market and nonmarket institutions takes a decisive turn
over degrees of uncertainty and exposes the implications of how the way in which
uncertainty is communicated leads to clashing conceptions of agency. Legislative,
204
medical, and public discourses feature contingency and uncertainty when they describe
the state of DTC genetics. But uncertainty is reframed as a public health issue. The
uncertainty through which providers of DTC genetics emphasize and convey the
complex, contingent choices enabled by genes and genetic technology to their clients,
nonmarket actors argue, in fact removes agency from individuals instead of
empowering them. The market of DTC genetic services constitutes a public health risk
because it fails to communicate fully the potential consequences and implications of a
DTC genetics practice to individuals, who cannot act appropriately and may act
inappropriately (for example, unnecessary surgery
91
).
Framing health-related DTC genetic services as an issue of public health is not
unique to nonmarket discourses. Arguments made by industry insiders acknowledge the
same issue. As evidenced in Chapter II, however, the arguments of market actors turn
the tables. The health-related DTC genetics industry justifies the need for its services by
arguing that the accessibility of DTC genetic services creates wider use of diagnostic
services, and the privacy afforded to clients helps individuals test for diseases they may
be less comfortable to test for within the existing health care and insurance system.
DNA Direct's Dr. Elissa Levin says that her company found genetic mutations in one-
third of its customers, a stark contrast to the 5-10 percent in clinics that offer genetic
testing. Anonymous or near-anonymous access to genetic technology provides
91.
See e.g, Pear, "Growth of Genetic Tests Concerns Federal Panel."
205
incentives for diagnostic testing, which, in turn, allows people to make choices about
treatment options or lifestyle changes that can reduce their risk of a disease.
92
The language of legislative, public advocacy, and medical organizations thus
follows the rhetorical patterns of health-related DTC genetic services when it comes to
creating a vocabulary of uncertainty to communicate the contingent, complex choices
enabled by genes and genetic technology. Through this vocabulary, the languages of
legislation, medicine, and public advocacy seek to articulate spaces in which individuals
can make informed decisions regarding their use of genetic technology. These spaces,
however, are partly enabled and constrained by validity claims grounded in and
redeemable through what Habermas calls "moral-practical discourse."
93
The spaces of
meaning-making and of decision-making are, or so the nonmarket actors argue, always
the public at large rather than the individual. In this space, choice is constrained and
limited rather than (as was true in the market discourse) predicated on grounds that
"depend simply on our preferences and do not require any self-limitation."
94
But agency
for making choices cannot rest solely on the deliberative practices of a public sphere
either. All three institutional sites of these discourses locate agency in preexisting sites
of institutional expertise. Yet, at the same time, all nonmarket institutions admit to the
92.
Boodman, "Too Much Information."
93.
Habermas, Theory of Communicative Action, 23.
94.
Habermas, Future of Human Nature, 12.
206
inevitability of further public deliberation. New scientific discoveries will test old
norms, guiding, regulating, and valuing uncertain information and informed choice.
The market language locates responsibility and, in turn, praise and blame with
the individual customer. The nonmarket languages articulate informed choice and
decision-making as a function of communal norm-setting, embodying the process in
protocols set for proper choice by experts. As a consequence, the communal model of
deliberation shifts to one where expertise trumps deliberative choices. Here, the
languages of nonmarket actors employ the ethos of scientific and medical expertise to
argue that preexisting experts should make the choices, evaluate the actions, and
translate the results of a genetic test into the lives of their clients. Responsibility for
actions in these institutional discourses thus moves from sites of public decision-making
to expert intermediaries.
Thus, unlike the language of the market, nonmarket languages do not attempt to
communicate the complexities of genetics to lay audiences. Instead, the necessary
heuristic efforts are outsourced to preexisting sites of expertise, despite the fact that, as
the SACGHS document admits, these traditional holders of medical expertise frequently
know little about genetics. This practice stands in stark contrast to the market languages
of DTC genetics providers, which extend the complexity of genetics to lay practice
through their own heuristics rather than the preexisting heuristics of legal or medical
expertise. The disagreement between how these institutional discourses approach the
issue of communicating and integrating complex science into lay practice is problematic
207
because it puts stresses on the communicative conventions that relate complex genetics
to social and medical practice. The clashes between legislative, medical, public
advocacy, and market languages yield communicative practices that stand in contention
and put at risk a stable locus of agency. What emerges is a language of DTC genetics --
a vocabulary and a grammar -- that struggles to find common ground for framing
genetic complexity in relation to existing social practice, yields disagreement over
where agency, and thus responsibility, risk, and blame ought to be located, and makes it
difficult to explore, justify, and legitimize
95
choices within the options made available
by DTC genetics.
Risks for clients emerge here. The difference in how the institutions involved in
DTC genetics articulate sites from which choices can be made, the next chapter will
argue, leads to communicative predicaments
96
that put at risk the clients of DTC
genetics. If institutional languages (of the market, legislation, medicine, or public
advocacy) should provide a heuristic for lay clients to understand complex genetics and
to help integrate this new technology into life decisions, then clashes among these
heuristic frameworks make successful and productive integration difficult. This
difficulty is not simply an inconvenience. Instead, it exposes individual clients to a
95.
See Boltanski and Thévenot, On Justification.
96.
Communicative predicaments, or "argument predicaments," according to G. Thomas
Goodnight's "Predicaments of Communication, Argument, and Power," are "posited as ways to
discover and assess different types of validity claims competing as 'the force of the better
argument.'" See G. Thomas Goodnight, "Predicaments of Communication, Argument, and
Power: Toward a Critical Theory of Controversy," Informal Logic 23, no. 2 (2003): 119-138.
208
range of risks. The next chapter discusses how clashing institutional languages make
difficult, or even bar, the successful communication and translation of complex genetics
into lay practice, how this leads to difficulties in integrating new, complex elements of
nature (such as the possibility of knowing our genes) into existing social and individual
practices, and why the incompatibilities between market and nonmarket languages
expose the individual clients of DTC genetics to a wide range of risks, ranging from
physical risks to privacy, consent, and identity.

209
Chapter IV
The Risks of DTC Genetics
Chapters II and III show that the languages designed to act as heuristics for
framing the complexities of advanced genetic science and technology differ across
institutions. Common to all institutional languages is the rhetorical problem of how to
shape communicative practices that can relate and integrate the mathematical
uncertainties and social complexities of probabilistic genetic test results to the existing
social practices of lay audiences. A genetic mutation need not indicate the presence of a
disease. Unlike traditional medical diagnostics, a positive result (where the genetic test
reveals an abnormal mutation) still leaves open the possibility to change the future and
(with some exceptions) prevent the disease. This necessary articulation of uncertainty
puts at stake the issue of agency: who has the power to ground, make, and enact
legitimate choices in regard to a practice of DTC genetics.
In the market discourse, the rhetorical dissociation between mutation and disease
leads to a fuller sense of personal agency for the individual test taker. If the future is
malleable, then a genetic test empowers the client: a positive result, while never
welcome, can lead the test taker to preemptive therapy, surgery, or lifestyle changes that
diminish the chances of disease. Moreover, a genetic test can provide clients with deep
biological information about themselves that they can take to their doctor. Armed with
this information, a patient can interact with a physician in a more informed and
210
ultimately productive way. In terms of non-health ancestry tracking, genetic information
can perform a similar function. It gives clients access to advanced genetic technology
that allows them to understand more about their ancestral origins and understand their
family identity more deeply.
The optimism of the market discourse is not shared by other institutions.
Legislation, medicine, and public advocacy largely ignore DTC genetics. In the few
moments they acknowledge and discuss DTC genetics, these nonmarket actors, too,
emphasize the uncertain and contingent nature of genes. The function of this uncertainty
is different, however. For nonmarket actors, the necessary presence of uncertainty
resituates the locus of agency from the individual initially to a public forum and
ultimately into the space of scientific and technological expertise. The languages used
by these institutions show that the uncertainty and contingency that arises from having
to separate the presence of a genetic mutation from the presence of a disease is too
pronounced: the uncertain nature of genes does not as much empower individuals to act
on their newly gained genetic information as it confuses them and leaves them
grappling with how to cope with the raw scientific data revealed. To be a meaningful
and responsible practice, the nonmarket actors argue through the ethos of expertise,
DTC genetics needs to be integrated into existing norms and practices of healthcare,
medicine, and laboratory science: only this can ensure that the burden of translating and
informing lay clients of the potential risks and consequences of genetic testing will be
met.
211
The institutional languages examined in Chapters II and III are alike in their
efforts to articulate a space in which the nature of genes and the potential of genetic
technology remain contingent, a contingency that opens possibilities for individuals to
make informed choices about their use of applied genetic technologies. These languages
differ in where they situate the locus of agency and responsibility: where they articulate
a space that legitimizes the power to ground, make, and enact informed choices about
the use of applied genetic technologies. The previous two chapters showed the
conventions of communication practiced by market and nonmarket actors, illuminating
best practices unique to each institutional space for communicating the complex nature
of genes. But these chapters also showed the failure of these institutions to engage with
each other beyond external displays of contention and to create a shared, common
ground from which informed, legitimate choices could be made and enacted. Thus, this
chapter examines what happens when different institutional languages are assembled
into a broad context that grounds the practice of DTC genetics. This chapter discusses
the implications of communication complexity as it emerges from a failure of
institutions to construct a common ground for choice and action: it looks at the stresses
put on the communicative practices that situate genetic complexity in relation to social
practice when all available languages are assembled into one normative context rather
than viewed as multiple perspectives.
Specifically, I argue in this chapter that clash occurs as conflicted institutional
languages compete over where to situate grounds for making and enacting legitimate
212
choices about the use of DTC genetic technology, and that these clashes put at stake the
legitimate integration of genetic biotechnology into the life choices of individuals and
publics. The chapter argues that the locus of agency is rhetorically contested by
institutions and that a rhetorical negotiation and situating of a shared locus of agency
that can ground informed, legitimate choices is necessary for biotechnological practices
like DTC genetics. Within a biotechnological practice, norms of state-of-the-art
communication thus cannot reduce themselves to and draw only from discrete
institutional perspectives (i.e., they cannot limit themselves to best practices for medical
communication, or best practices for market communication) but, instead, must evolve
from the broader, albeit contested, range of contexts that assembles singular, contending
institutional languages.
This chapter builds on a theoretical framework by Luc Boltanski and Laurent
Thévenot to show how the tensions among the communicative conventions of different
institutions pose problems to the integration of this new biotechnological practice into
the existing social practices of clients. First, the chapter outlines Boltanski and
Thévenot's theoretical framework for how "common worlds" or common contexts exist
within which individuals justify their actions according to rules and principles unique to
that context. The chapter then moves toward its central argument, as it situates the
institutional discourses of DTC genetics within common contexts of justification. Here,
the chapter argues that because independent "common worlds" grounding contexts of
institutional justification differ in where they situate the power to make decisions and
213
actions, the lack of a shared common ground over how to situate agency between the
institutions involved in DTC genetics leads to tensions over how to legitimize and
justify choices and actions. In DTC genetics and in biotechnological practice more
generally, these tensions lead to risks, as they lead to a failure of finding common
ground for situating disruptive complexity in the context of existing social practice. For
each common world, the chapter identifies a central risk that emerges when the practice
of DTC genetics is limited to the communicative practices of a singular institutional
language. Thus, limiting the language of DTC genetics to the symbolic structures of the
market world leads to the risks of physical harm, of the domestic world to identity risks,
of the civic world to consent risks, and of the technological world to privacy risks. Each
of these risks arises through disagreements, tensions, and ultimately clashes over how to
situate agency as a ground for action within and across the multiplicity of polysemous
institutional languages.
Boltanski and Thévenot's Common Worlds
The polysemous institutional languages of DTC genetics are in tension with
each other because they ground justifications of agency and, with agency, responsibility
and trust, differently. To explain this difference through the lens of Boltanski and
Thévenot's concept of common worlds first requires a brief overview of common worlds
as shared contexts of justification, of these shared contexts as dynamic, and of the
deficiencies that can result from the dynamic nature of shared contexts of justification.
214
Common worlds is a term that designates independent symbolic contexts that uniquely
define key principles used by agents to justify and judge actions in a particular time,
place, and circumstance. These symbolic contexts are modeled on five "political forms
of worth:" an "inspired polity," "domestic polity," "polity of fame," "civic polity," and
"industrial polity." Because the "industrial polity" can be split into a "market world" and
an "industrial world," Boltanski and Thévenot identify six "common worlds:" "inspired
world," "domestic world," "world of fame," "civic world," "market world," and
"industrial world."
1
Common Grounds for Justification
Boltanski and Thévenot ground these common contexts in part in rhetorical
theory. They trace their concept of "common goods," "common polities," and eventually
"common worlds" back to what they call the "commonplace tradition," or topoi, in
rhetoric: "Our enterprise might be said to be linked, in a way, with the tradition of
studying 'topics' or commonplace arguments, a tradition included within the instruction
in rhetoric that made up the core of the classical humanities." Tracing commonplaces
through Plato, Aristotle, and Cicero down to Vico, and through Vico against Descartes,
2
they situate rhetorical topoi at the center of what they later expand into six "common
1.
Boltanski and Thévenot, On Justification.
2.
Ibid., 67-71.
215
worlds." Citing Vico's The New Science,
3
they observe a "topical 'ingenuity' that relies
on 'commonplaces' [and] that ties in quite well with the strong cohesiveness and the
multiple redundancies that we observe in reading the works we have used to extract
polities."
4
Their discussion of rhetoric explains how topoi or contexts can be grounded
in stresses that both cooperate and compete, providing for any situated discourse
multiple reasons for articulating and guiding available loci of choice. From this
rhetorical understanding of topoi, Boltanski and Thévenot conceive of "common
worlds," or common contexts, within which the rights and worth of individuals can be
determined and justified.
Boltanski and Thévenot argue that actions within a social space are justified by
actors/agents according to different "grammars" or "principles" that constitute different
"worlds" or "orders" of living. These worlds do not exist separately within a larger
society but within the same bounded social space and are invoked at different moments.
Boltanski and Thévenot posit that, within the common worlds, social interactions are
governed by principles that determine how we perceive the worth of ourselves and
others. Their concept of worth goes beyond most common associations of the term that
associate worth with either a purely financial or a purely moral meaning: "Worth is the
way in which one expresses, embodies, understands, or represents other people
3.
"topics ... is an art of regulating well the primary operation of our mind by noting the
commonplaces that must all be run over in order to know all there is in a thing that one desires
to know well" (Ibid., 69).
4.
Ibid., 69.
216
(according to modalities that depend on the world under consideration)."
5
If an
understanding of someone's or something's worth regulates interactions between us and
others, then a mechanism must exist for determining "worth." In other words, if "worth"
determines how we understand others, how can we judge the worth of others in relation
to us? This central question is complicated by the fact that the concept of worth is a
dynamic one.
The Dynamic Nature of Worth
Crucially for Boltanski and Thévenot's framework of justification, the concept
of "worth" is not static. Instead, the sense of worth that grounds how persons express
and understand others differs depending not only on the other person (or thing) with
which they interact but also on the situation in which the interaction takes place. For
Boltanski and Thévenot, individuals understand themselves and others within a social
space according to a set of principles that determine their worth. These principles, they
argue, differ depending on the "world" or situation we inhabit and interact with:
Principles held in common do not merely orient argumentation or action the way
"value systems" do [...] More crucially, principles held in common are grounded
in different common worlds. Something that belongs to and exists in one
common world may be unknown in a different world [...] Objects that constitute
tools for making the worth of persons manifest in one world may not be taken
into account at all in a different world.
6
5.
Ibid., 132.
6.
Ibid., 131.
217
A number of points in this paragraph are worth noting. First, Boltanski and Thévenot's
concept of worth distinguishes itself from superficial theories of morality. Worth does
not simply orient actions and choices according to an existing framework of values and
beliefs that the individual inhabits. The principles that guide action thus do not give rise
to a static value system. Instead, worth rests on a set of principles that can differ across
situations and contexts. Second, worth is not limited to humans. Instead, worth can be
linked to material objects that exist within a specific context and enter into interaction
with humans. This is not to say that objects themselves can carry an inherent sense of
worth but that objects can act (rather than just exist) either alongside or in-between
humans. Objects thus have the capacity not only to exist in relation to humans but to
partake in the relations and interactions between humans.
Boltanski and Thévenot's acknowledgment of the relation between objects and
humans is critical to an understanding of how elements (or objects) of nature become
integrated into the social. The notion of objects as constitutive elements in human
interaction reminds of the work of Bruno Latour and other sociologists of science (e.g.,
Knorr Cetina
7
). For Latour, objects carry similar significance. In Politics of Nature, he
argues that in a theoretical framework for the integration of nature into the social space,
"objects" must be seen as articulating their presence within the social space. "Objects,"
7.
Knorr Cetina, Epistemic Cultures. Karin Knorr Cetina's impressive work on epistemic
cultures detailed how two sciences -- molecular biology and high-energy physics -- have
distinctly different epistemological lenses for exploring nature that can be linked to their
distinctly different social and rhetorical modes of interaction
218
in other words, should be seen as capable of speech -- not in the traditional sense, but in
the sense that the act of speech establishes both presence and a frame for interaction.
8
In
theorizing this concept, Latour draws from an earlier case study in The Pasteurization of
France, where he found that Pasteur's very discovery of germ theory depended on
giving a "voice" to the idea or object of a "germ." The articulation of an object in
relation to the human and social space allowed Pasteur to crack prior scientific
consensus that saw the root cause of disease as internal.
9
Latour's concept of objects
thus reminds of Boltanski and Thévenot's: for both, objects can participate in creating
and establishing relations of worth.
The inclusion of objects in the interactions of humans is significant for
considering how the theoretical gambit of Boltanski and Thévenot's conceptualization
of worth relates to the discourses of DTC genetics. Boltanski and Thévenot are
concerned with how relations of worth that are guided by underlying principles can
create agreement among individuals:
In order for persons to reach agreement (and we have shown how agreement
reaching is supported by qualification of persons in terms of states of worth), the
quality of things must have been determined in a way that is consistent with the
principles of worth invoked.
10
Principles that determine states of worth thus provide a framework in which coherent
8.
Latour, Politics of Nature.
9.
cf. Chapter I, footnote 51.
10.
Boltanski and Thévenot, On Justification, 130.
219
polities emerge through agreement. The role of communication becomes important
here. For coherent polities to emerge, agreement must manifest itself in actions that not
only are consistent with principles of worth but are made visible as part of a
communicative practice: "The act of bypassing justice and behaving only as one
pleases, without being burdened by the requirement to explain, is the defining act of
violence."
11
The "requirement to explain" grounds a practice of reaching agreement,
where agreement rests on the ability to explain and make visible why and how an action
is consistent with the principles of worth within a given "common world." Judgment of
whether an action meets the requirements of the "common world" in which it is enacted
thus can be made by assessing whether an action is in accordance with (and can be
justified through) the principles of a "common world."
Deficiencies of Justification
Not all choices can be made, not all actions can be evaluated, and not all choices
can be justified within these common worlds, however. Often, choices and actions
transgress the boundaries of common worlds and problematize their justification within
a given social context. Thus, a critical aspect of Boltanski and Thévenot's worlds of
worth is that they are neither static nor fragmented. Thinking about "common worlds"
as singular contexts can make them appear insular and sealed off from each other: "in
the tests that we have examined up to now, only beings belonging to a single world
11.
Ibid., 37-38.
220
were involved."
12
In any modern society, however, individuals (usually not objects)
routinely are grounded through most of the worlds. In reality, decisions and actions of
agents invoke multiple sites of social interaction: "We do not intend to [...] argue that
human beings reach agreement because their reason leads them unfailingly to adopt one
particular principle or another."
13
The individual whose livelihood is tied to actions
within the industrial world, for example, can shift to different grounds for fashioning
communication in the domestic world at the end of the day. If individuals move
between worlds, then so can principles of worth and justice. What is considered to be
worthy within the industrial world would yield to other principles of worth within the
domestic world. In this sense, Boltanski and Thévenot's framework seeks not to confine
individual persons and their actions within specific "common worlds" but instead to
"preserve uncertainty about people's actions."
14
Because of the multiplicity of
institutional actors involved in the practice of DTC genetics, the more interesting
theoretical question for this project is less how agreement is reached than how
disagreement arises.
Indeed, according to Boltanski and Thévenot, the justification of actions in
social interaction more often than not crosses the boundaries of common worlds.
Actions are not static: they can take place in different common worlds that rest on
12.
Ibid., 215.
13.
Ibid., 65.
14.
Ibid., 216.
221
different principles and orders of worth. A successful justification of an action within
one world thus could fail in another. The fluidity of the common worlds can cause
tension, disagreement, even clash. Thus, if disagreement is a disharmony or
misunderstanding of the orders of worth that govern a given interaction, as Boltanski
and Thévenot argue, then any interaction must be able to be enacted in any number of
the common worlds. The institutional languages of DTC genetics exist in specific
worlds, but what happens when the languages of these institutions clash? What happens
when actions cross the boundaries of common worlds?
If agreement rests on a "requirement to explain" and justify one's actions, then
disagreement comes from an inability to meet this requirement. In other words,
disagreement arises if an action cannot be justified and judged through the principles of
worth that govern a given common context: "An initial challenge to a situation comes
when disharmonies between the worths of the persons and objects involved are made
manifest and translated into terms of deficiency."
15
On one hand, Boltanski and
Thévenot argue, disagreement can arise when the worth of persons and objects does not
match the common world in which persons and objects interact. But disagreement runs
deeper than a mere communicative inability to explain and justify an action in terms of
the situation in which it is enacted. "The coherence on which judgment rests," they
argue, "does not lie in language alone. Relevance is not simply a matter of stylistic
15.
Ibid., 134.
222
figures, as a reductive grasp of rhetoric would have it."
16
For coherent polities to be
possible, actions need not only be justified but be made visible and "translated into
terms of deficiency,"
17
where the clash between how an action is justified and how it
matches up with the principles of worth that govern a given "common world" is made
evident.
Boltanski and Thévenot's framework for disagreement in social interactions
reveals what is at stake in the clashing institutional languages of DTC genetics: the
grounding and thus the legitimization of actions as they relate to (or reshape) the rights
and principles of justice associated with individual persons and the (genetically linked)
groups around them. These actions, and the underlying loci of agency and responsibility
that ground and legitimize them, are bounded by either market inducements or
legislative rules, medical advisories, and public advocacy, and these sites compete over
where to situate agency for making choices. Thus, problems arise when the languages of
different institutional sites involved in the practice of DTC genetics compete over but
cannot reconcile where to situate trust that invests the principles of worth and justice
into worthwhile decisions and actions of an agent.
The fluidity with which individuals and their actions combine, separate, or
transgress the independent symbolic structures of common worlds poses the question of
how actions can be justified and legitimized when the underlying principles of worth
16.
Ibid., 130-131.
17.
Ibid., 134.
223
that ground individual and collective rights shift. As Boltanski and Thévenot ask: "What
happens when persons and things from different worlds present themselves together in a
test?"
18
Such a situation "leads us to leave natural agreement behind."
19
It requires
mechanisms to navigate the shifting principles of worth and justice and to navigate
actions that must be justified not only within one but across multiple common worlds.
Naturally, such a requirement leads to tensions. Boltanski and Thévenot note:
Every differentiated society may be qualified as "complex," in the sense that its
members have to possess the competence needed to identify the nature of a
situation and to navigate situations arising from different worlds. Since the
principles of justice invoked are not immediately compatible, their presence in a
single space leads to tensions that have to be resolved if the action is to take its
normal course.
20
Tensions and incompatibilities between common worlds thus challenge the justification
and legitimization of actions. Over time, norms can be discovered to prioritize contexts
as guides for participants in a social activity. The presence of new genetic technology
has destabilized existing norms for biotechnological practice by accelerating the
introduction of new genetic discoveries, services, and technologies into personal and
public uses. This acceleration promises an increase in complexity, which accentuates
tensions between discrete institutional actors and, eventually, gives rise to risks. Clashes
among institutions over the communication practices that frame and translate genetic
18.
Ibid.
19.
Ibid., 215.
20.
Ibid., 216.
224
complexity (and in so doing over how to situate agency as a ground for choice) put
stresses on norms for personal, legal, familial, and public communication that must lead
to tensions and disagreements over how choices about the use of DTC genetics can be
made and actions can be evaluated.
These tensions put at risk how individuals and groups perceive, frame, and
ultimately enact their actions and expose individuals, families, and publics to risks.
These risks, this chapter argues, result from the way in which market and nonmarket
actors fail to find a common ground on which to locate the agency for making choices
and enacting informed, legitimate actions, and thus create a context for DTC genetics
characterized by stresses on communication. The following section identifies some of
the common principles of these worlds, focusing on where Boltanski and Thévenot
situate grounds from which choices are made and actions are justified. It uses Boltanski
and Thévenot's framework as an organizing principle to show how the discourses of
market, legislation, medicine, and public advocacy, respectively, align with Boltanski
and Thévenot's "common worlds." For each context, the chapter then shows how a
consideration of the broader range of contexts -- of all institutional languages -- rather
than only one singular perspective creates stresses on communicative practices that
manifest themselves as risks. The first risk is the risk of physical harm that emerges
when the market language provides a singular perspective for DTC genetics that situates
this practice within a market world.
225
Normative Stresses on the Communication of Genetic Complexity
The Cost of the Market World: Risk of Physical Harm
The market world. Ironically, the market discourse of DTC genetics contains
few of the principles of Boltanski and Thévenot's market world. For Boltanski and
Thévenot, worthiness in a market world is tied to objects that are "salable goods that
have a strong position in a market."
21
Worthy persons are those who are "rich,
millionaires, and they live the high life."
22
These objects and persons are "inscribed in a
space that has neither limits nor distance, in which the circulation of goods and persons
is free."
23
It follows that "[t]he market world is thus populated with individuals seeking
to satisfy desires."
24

The principles of worth that undergird Boltanski and Thévenot's market world
are downplayed by the language of the DTC genetics market. Principles of competition,
monetary worth, and market position are important to the businesses that offer DTC
genetic tests. But these principles rarely are reflected in the public language that
articulates interactions between provider and client. On the contrary: more often than
not, this discourse is cautionary in nature. And while risk scenarios (like predisposition
to cancer or heart disease) at times may be overplayed in order to drive sales, little of
21.
Ibid., 196.
22.
Ibid.
23.
Ibid., 197.
24.
Ibid., 198.
226
the capitalist, competitive spirit that informs Boltanski and Thévenot's market world is
reflected in the language of DTC genetic testing providers and businesses.
On the level of agency as a ground for action, however, significant overlap
between Boltanski and Thévenot's market world and the market discourses of DTC
genetics exists. The market world's orders of worth situate agency firmly with the
individual. It is the individual who competes and strives for money and who interacts
with (and gives worth to) objects of worth. The same focus on individuality
characterizes the market discourse: the translation of genetic complexities into a lay
practice focuses agency and the possibility of choice on individuals.
25
This sense of
individual agency serves as a ground for arguments for DTC genetics, as it allows
individuals to become entrepreneurs in their own health practices and invest resources
to gain previously inaccessible knowledge about their health that can empower them in
their interactions with healthcare providers. In this sense, the market language of DTC
genetics and the principles of Boltanski and Thévenot's market world share a locus of
agency.
As the market language of DTC genetics articulates a space in which agency
rests exclusively with individual clients, it effectively sets boundaries for the ground
from which choices can be made and justified around the market world. Limiting norms
25.
See also Michel Callon and Vololona Rabeharisoa, "Gino's Lesson on Humanity: Genetics,
Mutual Entanglements and the Sociologist's Role," Economy and Society 33, no. 1 (2004): 1-27.
227
for how to communicate about the complexities of DTC genetics to the market world,
however, yields risks, specifically risks of physical harm.
Risks of physical harm in the market world. Clients of DTC genetic testing
rarely, if ever, are exposed to direct physical harm. Unlike traditional medical testing
where physical (e.g., blood samples, exploratory surgery, biopsy, endoscopy), chemical,
or radioactive (e.g., x-ray imaging, MRI, positron emission tomography) testing pose
clearly recognizable physical risks, no such possibility of harm exists in DTC genetic
testing. The procedure itself is harmless and can be done by the inexperienced lay
person at home. The most frequently used diagnostic tool (the buccal swap) is designed
to be used with minimal instruction and under no professional supervision. Made to
scrape cells off the inner cheek, the instrument is relatively soft and cannot do much
harm beyond inflicting a few minutes of slight discomfort.
Risk of indirect physical harm exists, however. There are consequences to DTC
genetic practices when the individual client either does not correctly identify the scope
and predictive potential of the test or misreads the results. The New York Times cautions
that the results of genetic tests can lead to "momentous decisions." A positive breast or
ovary cancer test, for example, could lead the client to undergo surgery and remove
organs and body parts that are at risk for cancer.
26
A breast cancer test that is either
inaccurately reported or inaccurately interpreted as negative by the client could keep the
test taker from regular screening or beneficial treatments. The same could be said for
26.
Pear, "Growth of Genetic Tests Concerns Federal Panel."
228
other cancer-risk assessment tests and other diagnostic tests. A negative result would
lead to similar consequences. Such physical risks further can extend to psychological
risks with potential physical ramifications.
27

Physical risks are most common for health-related DTC genetics, but they are
not limited to that subgroup. Misreading the results of a genetic ancestry test could
cause a client to identify with a particular heritage (e.g., Askhenazi Jewish ancestry)
that is at risk for specific diseases.
28
Conversely, persons who socially and familially
identified themselves with a heritage susceptible to specific genetic diseases mistakenly
could believe that they are, in fact, not biologically tied to that ethnic heritage. If clients
previously had taken precautionary measures against diseases commonly associated
with their ethnic heritage, they could cease doing so if they believe that they do not have
any biological links to the ethnicity in question. Indirect physical risks are equally, if
not more, damaging in pharmacogenetic testing practice. Misinterpreting results of a
pharmacogenetic test causes the client to adjust prescription drug dosage. If the results
indicate anything other than normal drug metabolism, the client would adjust drug
dosage accordingly. Pharmacogenetics providers currently warn not to do so without
consulting a physician. But without proper training, physicians, too, may be too
27.
See e.g., Ann-Marie Codori, "Psychological Opportunities and Hazards in Predictive
Genetic Testing for Cancer Risk," Gastroenterology Clinics of North America 26, no. 1 (1997):
19-39.
28.
See e.g., Offit, "Genomic Profiles for Disease Risk."
229
inexperienced to interpret the precise scope of what a CYP2D6 allele can and cannot
indicate in terms of drug metabolism and resistance.
The primary cause of indirect physical risks is inadequate understanding of
genetic complexity within the market world. If individual clients are aware of the
probabilistic nature of genetic testing, many of these consequences may not occur.
Legislative language, particularly from the Secretary's Advisory Committee on Genetic
Testing, shows that government regulators have picked up on the potential for indirect
physical harm in the market world. They blame the market, arguing that providers of
DTC genetic services do not communicate the complex nature of genetics adequately.
The implication here is that as businesses, market providers are more concerned about
selling their product than about guiding their clients to prudent, legitimate, and
informed choices. The solution, regulators propose, is to situate the practice of DTC
genetics within existing institutional structures of medicine and healthcare. This
proposition, however, can be problematic when many traditional healthcare providers
themselves are unfamiliar with genetic science.
29
It can be equally problematic when
individuals use DTC genetics precisely to avoid interaction with preexisting
institutional sites of expertise (because, for example, they are worried about including
genetic data in health insurance profiles) and when these persons would rather forego
testing than get tested within the existing healthcare and insurance networks.
29.
See for example Secretary's Advisory Committee on Genetic Testing, U.S. System of
Oversight of Genetic Testing.
230
Thus, physical risks emerge when norms for communicating about DTC
genetics are drawn from singular institutional perspectives. This is particularly true for
the market world, but not exclusively so. On one hand, the market language would
prefer to give full agency and responsibility to individuals only but cannot guarantee
that its clients have understood the complexities and potential consequences involved.
On the other hand, the languages of nonmarket actors would prefer to restrict agency
and responsibility to preexisting sites of expertise but fail to account for the benefits that
flow from DTC genetics as a private, anonymous practice. Drawing from a broad range
of institutional contexts that incorporates both market and nonmarket actors, clients thus
are exposed to stresses in how through contending communicative practices the
complexity of genetic knowledge is situated in relation to their social practices. Lacking
an integrated set of "best practices" that would combine the benefits of both sides,
individual clients are left to choose one or the other perspective drawing from the
benefits, but also accepting the risks it comes with.
If the choice they make to either undergo or forego a DTC genetic test results in
physical harm, these individuals face an additional problem: how to allocate blame. If
physical harm results from a test, individuals may need to justify their actions to
themselves (for making decisions about engaging in the practice of DTC genetics). Or
more frequently, they may need to justify their actions to family members, primary
healthcare providers (who often are unaware that their patients are undergoing DTC
genetic testing). Because the explanatory languages of the market and nonmarket
231
institutions locate agency, choice, and responsibility differently, such justification is
difficult. Both the responsibility and the right to manage, justify, and legitimize risk
outcomes is either left to the individual (in the market discourse) or is externalized and
shifted to sites of expertise. The responsibilities and rights for managing risk outcomes
thus remain unstable and leave individual persons unable to justify their actions as part
of social (inter)actions across multiple contexts. The principles and underlying rights
that would regulate a stable, legitimate practice of DTC genetics are put at risk because
the practice exists across a range of "common worlds" grounded in principles of agency
that are incompatible with each other.
These incompatibilities are not limited to the market world. The market
language of DTC genetics extends to the domestic world in both genetic genealogy and
health-related services. The next section argues that, beyond the risks to which the
market language exposes individuals by articulating a space for agency within the
market world only, the market language also exposes clients to identity risks when it
limits the scope of agency to the domestic world.
The Cost of the Domestic World: Identity Risk
The domestic world. The principles of the domestic world align closely with the
market language's emphasis on individual agency. This is true for the health-related
tests and is evident even more in the language of non-health/genetic ancestry tests.
Worthiness in the domestic world is a function of the household: "In the domestic
232
world, where worth presupposes personal loyalty to a worthy being and membership in
the closed universe of a household, objects are all the more private in character [...]"
30

The notion of "private objects" frames the constitution of a household. In the domestic
world, the "household" sets the limits of a space in which social interactions take place.
This space is a "closed universe." It separates notions of worthiness in persons or
objects from their worth in other common worlds. Instead, objects and persons are
aligned according to relations of worth that are "private in character." The private
character of principles of worth is critical in the domestic world. It provides a social
space in which actions are justified and legitimized according to the rules of the
domestic space, and as long as they remain within the domestic space, they are justified
by the principles of the domestic space alone.
The emphasis on the private does not indicate that social interactions in a
domestic space are unregulated, however. Boltanski and Thévenot's domestic world
follows strict hierarchies. The function of private objects in the domestic world is to
situate persons and their worths in relation to each other: "Objects and arrangements are
thus the means by which beings recognize one another's worth, just as they know their
own; this is the way they know and deploy the relative worth of the persons involved
and also the way they make themselves known."
31
Internal hierarchies thus provide the
essential guiding principles of the domestic world. "In the domestic world," Boltanski
30.
Boltanski and Thévenot, On Justification, 166.
31.
Ibid., 170.
233
and Thévenot argue, "objects are primarily determined by the way they support and
maintain hierarchical relationships among persons."
32
More specifically, objects
maintain hierarchical relationships by marking spaces of affiliation ritually honored
over time to determine relations of worth: "It is through reference to generation,
tradition, and hierarchy that order can be established among beings of a domestic
nature."
33
Or more specifically:
[i]n a domestic world, beings are immediately qualified by their relationship
with others. When beings belong to the same household, the relationship is one
of order. [...] when the relation to origins is established by means of
reproduction, the more worthy beings precede and the less worthy follow in the
generational chain.
34
The function of objects in Boltanski and Thévenot's domestic world closely
parallels the function of the gene-as-object in the market language of genetic ancestry
tracking. The texts analyzed from the Genographic Project showed how the market
language of DTC genetics uses the gene as a marker of diachronic heritage. In so doing,
the language of ancestral genetics situated the individual test taker in direct historical
contact with his or her deep ancestors. Metaphors reframed or turned (tropos) the
predictive potential of genes from a general (where specific genetic mutations mark a
wide range of of historical dates) to a particular relationship with specific individual
ancestors. The move from general to particular opened the possibility of personal choice
32.
Ibid., 169.
33.
Ibid., 165.
34.
Ibid., 167-168.
234
to seek out ancestral relationships that can define or re-define a familial or personal
identity. It extends the familiar space of immediate family relatives across time, and
creates a sense of being able to reconnect to what Tönnies called a "Gemeinschaft" in
which the agency of individuals trumps the structures that in a "Gesellschaft" relegate
individuals to passive bystanders.
35
An action taken within this space thus is focused on
(and restricted to) the establishing of personal relationships. As Boltanski and Thévenot
note, "when this world unfolds, the search for what is just stresses personal
relationships."
36
The stress on personal relationships and objects that are private in character
opens possibilities for social (inter-)action within the domestic space but does so at the
exclusion of other worlds. As Boltanski and Thévenot note, "[i]n a domestic situation,
for instance, the least worthy matter just as the most worthy do [...], whereas neither a
public collectivity (the civic world) nor a technician (the industrial world) has any status
-- neither matters -- in the domestic context."
37
This restriction on the domestic world
thus carries potential benefits: it sets up a social space of interaction in which everyone
matters equally, even if their relative worth may differ. At the same time, this principle
of worth can only be maintained at the subordination of other worlds. In the domestic
35.
Ferdinand Tönnies, Community and Civil Society, trans. José Harris and Margaret Hollis
(Cambridge: Cambridge University Press, 2001).
36.
Boltanski and Thévenot, On Justification, 164. Cf. also the use of the journey metaphor in
market discourses.
37.
Ibid., 134.
235
world, responsibility lies with the individual and is regulated through the internal
hierarchy of a family. Boltanski and Thévenot note that "the less worthy [...] are part of
the more worthy who include them and who bear responsibility for them."
38
Thus, the
locus of agency and responsibility is situated with individuals who bear both praise and
blame for actions taken that affect those around them -- generally within a familial
setting. The issue of responsibility and agency is a central principle of the domestic
world. The domestic world's sense of individual responsibility resonates with the market
discourse insofar as the market language of DTC genetics too sought to situate
responsibility with the individual persons choosing to undergo a DTC genetic test. But
limiting the power for making legitimate and informed choices to the domestic world
gives rise to identity risks: risks from genetic tests that expose individuals to new,
unexpected familial and ancestral contexts, forcing them to radically recontextualize
their self-understanding of who they are.
Identity risks in the domestic world. Identity risks can arise when the biological
certainty of a genetic test result undercuts preexisting social and familial notions of self-
identity. As the New York Times wonders: "will our genetic identity undermine our
cultural identity?"
39
The question primarily resonates with practices of genetic ancestry
38.
Ibid., 171.
39.
Amy Harmon, "Love You, K2a2a, Whoever You Are," New York Times, January 22, 2006,
http://www.nytimes.com/2006/01/22/weekinreview/22harmon.htm (accessed January 22, 2007).
236
tracking
40
because it speaks to the tenacity with which socially and culturally
constructed identities are held on to. Constructed as the epistemic fabric of how persons
perceive themselves in relation to others, a "cultural identity" is one that makes sense of
the world around us and our role within. What happens, however, when the carefully
woven epistemic fabric of cultural identity is undercut by the immutability of a
genetically derived identity test? By its very nature, genetic data inform the ontological
core of individual persons. They provide a biological basis, for some even a reflection,
of a self-identity that can complement cultural identities.
41
Thus, if a genetically
grounded biological identity is shown to be in tension or even incompatible with a
cultural identity, the former easily can trump the latter: genetic data about the self has
both more historical and biological depth than cultural, social, or familial hermeneutics
of the self in relation to the surrounding social. Genetic identity, in other words, could
effectively renegotiate cultural identity.
To relegate these issues solely to a philosophical clash between modernity and
postmodernity or between various schools of epistemology and ontology would ignore
their more direct ramifications. A number of recent cases involving high-profile names
exemplify the practical ramifications of genetic identity risk. Consider for example the
40.
See e.g., Andrew Scheinman, "Biotechnology for Consumer Use: Voluntary, Non-Medical,
DNA Identity Banks as Commodity Products," American Journal of PharmacoGenomics 4, no.
2 (2004): 69-72.
41.
See e.g., Kirsten Tagami, "DNA Gives African Americans A Stronger Link to the Past,"
The Atlanta Journal-Constitution, July 18, 2007, main edition.
237
issue of religious identity. In a much discussed case, filmmaker James Cameron
recently claimed to have found the tomb of Jesus Christ. DNA testing, he argued,
proved his claim. What made Cameron's claim contentious was that he cited DNA
evidence not only to prove that he found the tomb of Jesus, but also argued that he
could prove that the tombs surrounding that of Jesus' were those of his immediate
family. In DaVinci Code-like fashion, Cameron's discovery backed by DNA-based
evidence caused a stir in some Christian groups. They saw their strongly held beliefs
about the life and death of Jesus at risk of being undercut by the authority of Cameron's
biological "evidence." In the end, Cameron's claim failed to gain a strong foothold.
Critics attacked his link between the grave inscriptions and Jesus' presumed family, and
they attacked the reliability of DNA evidence that was over 2000 years old.
42
But the
case exemplified the risks to which established concepts of identity can become
exposed when confronted by genetic evidence.
Millennia-old DNA may be easily contestable, but does the same hold true for
more recent DNA samples? In the 1990s, researches looking to find out whether
Thomas Jefferson had had an illegitimate son with one of his slaves took DNA samples
from descendants of Jefferson's paternal uncle. The samples matched DNA samples
taken from descendants of Sally Hemings, seemingly proving that Thomas Jefferson
had direct, non-surname bearing progeny. In the same DNA sample, researchers found a
42.
"Jesus Tomb Found, Says Film-Maker," BBC News, 2007, http://news.bbc.co.uk/2/hi/
middle_east/6397373.stm (accessed February 28, 2007, archived by WebCite at http:/
/www.webcitation.org/5MzwbOfUV).
238
Y-chromosome from the rare K2 haplogroup in Jefferson's DNA that linked him with
near certainty to Africa or the Middle East. The logical conclusion of these findings
called into question Jefferson's Welsh ancestry, historical facts that said he had no sons,
as well as his character. The genetic findings disrupted and forced the re-evaluation of
what had been considered part of a national identity, and called into question the
geographical and familial heritage of a foundational and iconic character in U.S. history.
More frequently, identity risks relate to individual rather than religious or
historical identity. In February of 2007, Ancestry.com genealogists hired by the New
York Daily News found a link between civil rights advocate Reverend Al Sharpton and
the late Senator Strom Thurmond, who famously ran an unsuccessful 1948 presidential
bid on a platform of reestablishing racial segregation. The discovery, according to
Sharpton, was "the most shocking moment of his life." But the discovery was based on
traditional archival ancestry that painstakingly traced the two families' ancestral paper
trails: "Mr Sharpton's great-grandfather, Coleman Sharpton, was given to Julia
Thurmond, whose grandfather was the former senator's great-great-grandfather."
43

Shortly after this discovery, Sharpton decided to determine whether the link between
him and Thurmond was not only historical but also biological -- through DNA testing.
While Sharpton claims that he "'can't find out anything more shocking than I've already
43.
"Sharpton Slave Link to US Senator," BBC News, 2007, http://news.bbc.co.uk/2/hi/
americas/6396673.stm (accessed February 26, 2007, archived by WebCite at http:/
/www.webcitation.org/5MxCDTqrj).
239
learned,'" proving a biological link between the two undoubtedly would have
transformed the familial identities of both families in profound ways.
These may be high-profile cases, but they are not exceptions. People who
voluntarily choose to go through DNA testing to gain more insight into their ancestry
frequently experience similar disruptions of their perceived identity. Discussion fora
provided by DTC genetics businesses provide insight into how ancestry tracking
services can elicit emotional responses, and in some cases even distress, when genetic
test results do not match the test taker's pre-established social and cultural identity.
Examples of the disjunction between cultural and biological identity are abundant on a
popular listserv used by individuals to discuss their use of DNA genealogy services.
Posts often center on the danger of interpreting genetic ancestry information for those
without strong grounding in genetics. One post discusses how a son tried to reveal the
results of his mtDNA ancestry test to his mother. The results differed in some critical
aspects from the family history that the family previously had known and identified
with. The mtDNA results were highly general and vague in nature, but nonetheless had
the potential to cause serious identity problems for the mother who was not the primary
test taker and thus was not aware of the scientific probabilities, percentages, and
implications necessary to interpret such a result.
44
44.
For privacy reasons, I paraphrase these posts rather than quote directly from the listserv
postings. The posts are public only insofar as they are intended for subscribers of the listserv.
Even a quick perusal of any number of bulletin boards and listservs dedicated to DTC genetic
testing will reveal similar stories, however.
240
Other posts on the listserv have similar implications on the identity risks of DTC
genetics. Some concern inhabitants of regions to which the writers feel a strong cultural
or social affinity. A genetic test result that reveals no biological ties between inhabitants
of such a region and the dominant biological/ethnic populations of the region often is
read as problematic: it leads the test takers to question whether they truly belong to
where they believe their cultural and social ties are. Indeed, clients of genetic ancestry
tests frequently find themselves at loss when DNA testing reveals that while their social
and cultural ties to the region they inhabit are strong, their biological ties to the region
are thin at best. Someone who grew up in the United States believing to be of Eastern
European descent, for example,
45
could be forced to question her identity when they
find out that their ancestral trail reaches into Scandinavia, and the geographical ancestry
they felt they belonged to may have been a result of a long-ago invasion from groups in
Scandinavia into Eastern Europe. This knowledge need not negate the previously held
beliefs in familial identity: some posts discuss the importance of keeping in mind that
genetic information adds to ancestral knowledge rather than undermines it, and that
genetic information could add more depth and dimension to preexisting cultural
identities. But it could just as well cause the test taker to doubt and deny their prior
sense of familial, historical, or cultural identity.
45.
See previous footnote.
241
Online bulletin boards set up by providers of genetic ancestry services
46
reveal
similar patterns. A particularly difficult question came up on one of these boards when a
female test taker wanted to trace her paternal line and asked two close relatives (one a
father, the other his son) to go through a Y-DNA test. The test ended up revealing an
unexpected genetic discrepancy between the two that was large enough to negate any
possibility for the son to be related to his father. In terms of family and self identity, few
types of information could be more destructive and necessitate a radical re-evaluation of
personal and familial identity. But identity risks are not limited to ancestry tracking and
non-health genetics,
47
even though they frequently are a result of these types of tests.
Health-related DTC tests could in some cases cause similar issues. A test for an
ethnically specific disease (some DTC genetics providers for example offer tests for
diseases highly correlated with Askhenazi Jewish heritage) could reveal not only that
the individual is not at risk for that disease, but also that he or she does not in fact have
the genetic markers that define their ancestral heritage. Identity risk would still be
related to issues of ancestral heritage, but arise unexpectedly through a health-related
test.
46.
See e.g., http://www.familytreedna.com/forum/.
47.
Paternity tests are an increasingly popular category of non-health genetics, and one that I
have chosen not to emphasize in this study. With RiteAide's recent offering of over-the-counter
paternity tests, this particular subgroup of tests will garner increasing attention, however.
Nonetheless, the more difficult paternity issues frequently are a result of genetic ancestry tests,
where the possibility of paternity information being revealed is not foregrounded.
242
These identity risks speak to the neglect of communicating about issues of
identity within the institutional languages of DTC genetics. If the complexities of
genetics are translated and situated adequately to relate to the social practices and
knowledge of clients, then identity issues can be anticipated and managed. Identity risks
thus need to be addressed within the languages of institutions: they are predicated on the
ability of institutional languages to communicate both the mathematical and social
complexities that are integral to a productive DTC genetics practice. If choice and
agency rest with the individual, then genetic ancestral information can help strengthen
or add a new, complimentary dimension to preexisting social and cultural notions of
identity. If choice and agency rest with the voice of a communal public or within the
established structures of institutional expertise, then such choices can be left safely to
those institutional processes. Neither market nor nonmarket actors attend to identity
risks, however, and both fail to communicate how the complexities of a genetic test can
cause identity risks. The locus of agency and responsibility is not as much contested as
it is left vacant. The agency, responsibility, and power for making legitimate choices (as
well as their eventual justification) lack a clear grounding, and enacting choices about
DTC genetics leaves both individual persons and groups connected through a shared
identity exposed to unstable and conflicting views on their respective identities.
Contending communicative practices for relating genetic complexity to social
practice thus leave clients unable to respond to expect and respond to issues of identity:
neither the market language that prefers to situate identity within the domestic world,
243
nor the nonmarket languages that could remove the exclusive consideration of identity
from the domestic and open it up to larger public consideration address identity as a
potentially problematic consequence of DTC genetic testing. While the risk of physical
harm was a result of considering singular perspectives over a broader context that
required a common ground for communication practice, here the broader context from
which clients draw puts stresses on norms of communication not because the languages
of its constituent institutions are clashing but because none of them address identity as a
problematic risk category.
Identity risks expose the limits of the domestic world; limits explicitly noted by
Boltanski and Thévenot. As cited above, they note that "in a domestic situation, for
instance, the least worthy matter just as the most worthy do [...], whereas neither a
public collectivity (the civic world) nor a technician (the industrial world) has any status
-- neither matters -- in the domestic context."
48
Neither the civic nor the industrial world
can partake of interactions within the domestic world in order for these principles of
worth to remain in harmony. This seclusion of the domestic from other worlds can be
problematic. Boltanski and Thévenot argue that "arrangements of a domestic nature are
weakly equipped with instruments for acting from a distance; such instruments are
particularly well developed, in contrast, in the civic world."
49
If a social action is
oriented from the outside toward the domestic world, or from the domestic world to the
48.
Ibid., 134.
49.
Ibid., 164.
244
outside, the principles of worth that uniquely govern the domestic world may be
insufficient to deal with the consequences of the action. It is this problem of privateness
and exclusion of other worlds from the consequences of a given action that the
legislative, medical, and public advocacy language of DTC genetics critiqued as
problematic.
In particular, the Senate hearings in 2006 show that nonmarket languages
juxtapose esoteric (private, internal) and public epistemologies as grounds for making,
legitimizing, and justifying actions; the former, they argue, cannot adequately translate
genetic complexity and leads to public health issues. Similarly, Boltanski and Thévenot
indicate that both the civic world and the industrial world often can be better equipped
to deal with the justification of actions that partake of not only the personal, domestic,
but also the public world. And as the languages of nonmarket actors show, such is
precisely the call of government regulators and public advocacy groups: DTC genetics
is an increasingly public practice with consequences for public health and safety;
actions taken by individuals about or in response to a DTC genetic test thus require a
form of public regulation.
These limits articulate what the nonmarket actors involved in DTC genetics
articulate: that agency and responsibility for actions must shift from the individual to a
communal, civic space. Both the risk of physical harm and identity risks are predicated
on a notion of consent: whether or not the individual test taker has the ability or ought to
be given the ability to give full, informed consent to taking a DTC genetic test. The
245
market language articulates individuals as capable of giving informed consent. The
nonmarket actors take a more cautionary tone and see consent as an asymmetrical
deliberation between expert and lay individual. Thus, consent itself is a risk factor --
primarily in the non-health/ancestry market, but also in the health-related market.
The Cost of the Civic World: Consent Risk
The civic world. The domestic world is limited because its actions can never be
observed from a place where actions do not have an immediate and direct bearing on
their context. Boltanski and Thévenot note that "arrangements of a domestic nature are
weakly equipped with instruments for acting from a distance; such instruments are
particularly well developed, in contrast, in the civic world."
50
Indeed, the limits of the
domestic world are visible in applied genetic practice, specifically in terms of
responsibility and agency. Genetics weblog Genetics & Health reports on a study that
found members of the public to be hesitant about the strain that would be imposed on
them if they had to carry the burden of responsibility for deciding themselves how to
use and manage personalized genetic information.
51
These limits of Boltanski and
Thévenot's domestic world can be dealt with more productively in the civic world.
50.
Ibid., 164.
51.
Elaine Warburton, "Personalized Medicine Leaves Public Confused," Genetics & Health,
October 29, 2007, http://www.geneticsandhealth.com/2007/10/29/personalized-medicine-
leaves-public-confused/ (accessed February 21, 2008, archived by WebCite at http:/
/www.webcitation.org/5VmV4vwEl).
246
Boltanski and Thévenot invest a capacity for collective action into the civic world that
is missing in the private world. In the latter, actions are justified and legitimized within
the contained, private epistemology of the domestic, setting norms for what the client-
as-individual can and should do with the newly gained knowledge about genetic
mutations. In the former, actions are justified and legitimized through a collective,
setting norms for how choices about the use of DTC genetic technology cannot be left
to the private preferences and beliefs of individuals.
For Boltanski and Thévenot, the price of extending the scope of actions to the
civic world is a loss of personal agency, and in turn personal rights, through a
transformation of the personal from the individual to the social sphere. They note:
The distinctive feature of the civic world is that it attaches primordial
importance to beings that are not persons. In this world, the ones who accede to
higher states of worth are not human persons but rather the collective persons
that they constitute by meeting together.
52
Worthiness of persons is no longer associated with persons as individuals. Instead,
worthiness is linked to how individuals transcend their individuality. Transcending
one's individuality demands a loss of will, and thus of agency:
Persons are all subject to the same justice because everyone possesses a
conscience that is fashioned in the image of the collective conscience and
because everyone is capable, by listening to the voice of this conscience, of
subordinating his or her own will to the general will.
53
52.
Boltanski and Thévenot, On Justification, 185.
53.
Ibid.
247
Or, in other words: "In the civic world, one attains worth by sacrificing particular and
immediate interests, by transcending oneself, by refusing to place "individual interests
ahead of collective interests."
54
The subordination of individual to collective or general
will stands in stark contrast to the esoteric spaces critiqued in the Senate hearings.
Instead of investing private spaces of action with worth (as the domestic world does),
the worthiness of persons in the civic world "is qualified [...] by the fact that they
belong to public space as opposed to the 'private' world: one speaks of "public
agencies."
55
The emphasis on "public agencies" explicitly shifts agency from the individual
to the collective. The move toward public agency is one for which the Secretary's
Advisory Committee on Genetic Testing argues explicitly. In both recommendations, it
emphasizes that the the collective will of a public trumps the private will of individuals.
As the first line in the "Acknowledgments" section reads: "The participation of the
public was fundamental to the development of this report."
56
Thus, the public as a
collective is situated as the agent (rather than recipient) of enacting the rules and
regulations that justify actions. In the words of Boltanski and Thévenot, the collective
public is an agent in creating the principles of worth that can justify and legitimize
54.
Ibid., 190.
55.
Ibid., 186.
56.
Secretary's Advisory Committee on Genetic Testing, Enhancing the Oversight of Genetic
Tests, iii.
248
actions. "In the civic world," they argue, "beings are persons when they are capable of
having rights and obligations, that is, when they have been created or authorized by an
act in which the will of all is expressed."
57
The legislative language of the SACGT
document does precisely that: it provides an open forum for "collective persons" to
express their will, and emphasizes repeatedly that its will is underwritten by the public.
The act of underwriting itself becomes constitutive of an action justified through
principles of public, collective will. Boltanski and Thévenot argue:
To resist the tendency that attracts them toward the particular, moral beings in
the civic world have to be stabilized by means of equipment [...] In order to
make itself visible, [a collective person] must have at its disposal the "equipment
needed to produce a tract, a typewriter and a copy machine.
58
The physical presence of a legislative document, and the physical act of inscribing it
with a collective will is a critical cornerstone of the civic world. The sacrifice of
private, individual agency and its transcendence toward a collective will is difficult: by
necessity, it de-stabilizes the personal ground on which individuals can engage in social
interaction with others. A public document that reflects collective will can anchor and
stabilize the newly gained collective will, however. It provides a nodal point around
which the collective will of a civic world can organize itself. The reports by the SACGT
seek to reflect precisely the kind of public will Boltanski and Thévenot identify as
central to the civic world, as they seek to work through public input and concerns
57.
Ibid., 187.
58.
Ibid., 189.
249
toward the kind of oversight that would guarantee the protection of the public as a
whole from the inducements of a market language aiming to sell DTC genetic services.
The central goal of legislative language is to create awareness of both the
benefits and risks of using DTC (and other forms of applied) genetic technologies
through a language designed to guide and balance judgment for the self and for others.
Such awareness is critical for a collective judgment of actions. Boltanski and Thévenot
note that "judgment is the expression of the general will that may be manifested in the
inner self of each person through the achievement of awareness."
59
Thus, the very
practice of translating the benefits and risks of a complex practice like DTC genetics
serves to create individual awareness that in turn manifests itself in collective judgment.
The link from collective judgement and choice to individual awareness carries
implications for the possibility and desirability of individual agency. If the goal of
individual awareness or knowledge is linked to the judgments a collective public can
make, then the creation of individual awareness for the sake of enabling individual
judgment (and thus situating agency with the individual) would threaten the collective
will of a public. The Senate hearings in 2006 reflect this notion. As government
regulators argue in the hearings, if there is no regulation for how complex genetic
science ought to be translated into a lay practice, then each business can translate it
differently. These esoteric spaces for judgment and choice, as those critical of DTC
genetics try to show during the hearings, lead to problems and risks because they
59.
Ibid., 192.
250
undermine the will of the collective in favor of the will of the possibly conflicting and
clashing principles and preferences of individuals. Transcending the will of individuals
in favor of the collective will of a public thus is justified because it enables the
possibility for collective judgment. But as the legislative language shows, and the
languages of medical organizations and public advocacy groups show even more
specifically, shifting agency and responsibility as a ground for action from individual to
public may be insufficient. Instead, the democratic lay opinion of the many, these
institutions argue, ought to be replaced by the expert knowledge of the few.
Thus, the civic world is conflicted in its attempts to stabilize diverse alignments
of norms. On one hand, it is sympathetic to the market and domestic worlds and seeks
to bring all the benefits of personalized genetic technology to individuals, while at the
same time warning them about the risks. On the other hand, the norms of justification
employed in market and domestic worlds can, in the case of new biotechnologies, not
yield the kinds of decisions and grounds for action that would ensure that the largest
number of individuals within a collective could benefit from this new technology. The
ground for legitimate action thus must be the collective that encompasses all
individuals, but asks them to compromise the personal preferences and values that
determine personal uses of DTC genetics in favor of uses that ensure the well-being of a
collective. This conflict over how to stabilize such diverging norms gives rise to consent
risks: risks that revolve around a conflicted sense of where the power for making
decisions and choices should be situated, and where making a choice from one ground
251
can negatively affect those who are denied participation in that choice but are affected
by it. In other words, the reason consent by others implicated is risky is because
different grounds of justification in multiple contexts will not yield the same decisions.
Consent risks in the civic world. Consent risks primarily arise from the social
complexities of DTC genetic tests. They put at stake issues of conflicting individual and
collective rights: they ask who has the right to make decisions and choices about the use
of a DTC genetic test. Traditional informed consent documents are required by both
health-related
60
and non-health DTC genetic providers. But as the Belmont report
outlined, traditional informed consent often remains limited to the individual.
61

Informed consent documents in DTC genetics generally do mention that others with
genetic ties to the individual test taker might be implicated in the results. However,
individuals with genetic ties to the primary test taker do not need to, nor can they,
themselves go through the informed consent process.
The limited reach of informed consent documents creates problems for
managing the results of individual tests. This holds true for any range of health-related
and non-health tests but is most evident in cases where genetic tests probe for diseases
with either fatal or life-altering consequences. Huntington's Disease (HD) is one of
60.
See e.g., Gretchen M. Jacobson, Patricia M. Veach, and Bonnie S. LeRoy, "A Survey of
Genetic Counselors' Use of Informed Consent Documents for Prenatal Genetic Counseling
Sessions," Journal of Genetic Counseling 10, no. 1 (2001): 3-24.
61.
The National Commission for the Protection of Human Subjects of Biomedical and
Behavioral Research, "The Belmont Report: Ethical Principles and Guidelines for the Protection
of Human Subjects of Research," Department of Health, Education, and Welfare, 1979, http:/
/www.hhs.gov/ohrp/humansubjects/guidance/belmont.htm.
252
them. HD differs from most other genetic tests because barring any laboratory errors in
sequencing and analyzing the sample, it can predict the eventual onset of the disease
with certainty. Yet, the same gap exists between diagnosis and treatment for HD as does
for any other disease with a genetic foundation: a positive test result does not mean that
the problem can be resolved (as it often can for diseases caused by bacteria or viruses),
only that it can be diagnosed. If anything, the diagnosis-treatment gap is wider for HD
than for other diseases: while environmental factors can influence the likelihood of
diseases like cancer or heart disease and can actively be controlled by the individual, no
such environmental factors exist for HD. The individual person going through a test for
HD thus must recognize that should the test come back positive, they will have to bear
the burden of knowing that one day, they will develop HD -- and that they can do little
to prevent it beyond managing the eventual onset of the disease. Informed consent
forms for HD testing, as well as for genetic testing for cancer and other serious diseases,
ensure that clients are aware of this possibility. They do not, however, include closely
related family members in the decision.
This omission can lead to complicated social interactions, where actions (about
engaging in an applied genetic practice) need to be justified and legitimized within a
complex social situation.
62
If a test came back positive, should individual test takers
inform their siblings, who may have the same genetic predisposition? But if siblings
62.
See e.g., Philip R. Reilly, Mark F. Boshar, and Steven H. Holtzman, "Ethical Issues in
Genetic Research: Disclosure and Informed Consent," Nature Genetics 15, no. 1 (1997): 16-20;
Taub, Morin, Spillman, Sade, and Riddick, "Managing Familial Risk in Genetic Testing."
253
have not given legal consent to potentially having to carry the burden of knowing about
HD or another disease, should they still be told? If so, are their legal rights violated, and
how should the primary test taker approach the highly sensitive problem of having to
tell siblings about something that will significantly change their life? If test takers chose
not to tell their siblings, are they violating their siblings' (legal or ethical) right to know?
In both situations, did primary test takers give full informed consent to the test, knowing
that they now will have to deal with the lifelong consequences of their test outcome?
These are some of the consent risks that individuals and their genetic kin face. None of
these social complexities are covered by traditional informed consent. But all require a
complex consideration of how actions taken by individuals intersect with institutional
spaces like the family or the law.
63
The limited reach of informed consent documents also raises issues in genetic
ancestry tracking, in particular in population genetics. On one hand, little of the risk
outlined in the previous paragraphs directly exists in non-health genetics. Ancestry
genetics, like all non-health genetic services, requires a sample of the full human
genome that includes the same types of health information as the samples submitted for
health-related genetic testing. The range of nucleotide pairs sequenced in non-health
DTC genetic practice are limited to a short range of genes, however. Revealing sensitive
health information that could pose the kinds of questions the person taking a health-
63.
See e.g., Angus Clarke, "Should Families Own Genetic Information? No," BMJ 335, no.
7609 (2007): 23; Anneke Lucassen, "Should Families Own Genetic Information? Yes," BMJ
335, no. 7609 (2007): 22.
254
related test could face thus is highly unlikely. Providers of DTC ancestral testing note
this explicitly. The Genographic Project's information and consent form, for example,
states -- twice -- that
the genetic tests to be performed do not tell us anything about your health or
about any health problems you (or your family) may have. These tests are part of
an anthropological study and designed solely to discover what migratory routes
your deep ancestors followed.
64
This is not to say, however, that no consent risks exist. A genetic ancestry test
could reveal that the individual test taker is part of a population that is at high risk for a
specific disease. Such results would pose questions about whether or not the test taker
would want to get tested for that disease (a possibility not made clear in any of the
informed consent forms analyzed). If they choose to do so, all the aforementioned
consent risks posed by health-related now would need to be considered in the use of a
non-health/genetic ancestry test.
A more prevalent consent risk exists in so-called population genetics. Population
genetics incorporates the results from individual ancestry tests into a larger study
framework that tracks the migration patterns of large populations. The existence of
personalized genetic ancestral testing in many ways relies on population genetics: it is
what allows genetic researchers and scientists to decode with increasing accuracy how
mutations translate into ancestral information. IBM/National Geographic's Genographic
Project provides clients of their personalized ancestral service with the option of
64.
The Genographic Project, "Consent to DNA Testing," mailed item to author, 2007.
255
participating (anonymously) in a larger population study. The Genographic Project's
informed consent form makes explicit mention of this option. It states that
if you agree to to have your data included, it will become part of our database of
genetic information - our "virtual museum." The results of our project are
presented on television, radio, the Internet, newspapers, magazines, and other
media. We will not disclose any information that reveals your identity - we do
not have the ability to link your personally identifiable information with our
genetic data.
65
The language here parallels the language of the Genographic Project's promotional and
test result texts. "Virtual museum" situates genetic ancestral data as something specific
and particular in contrast to the highly general information a genetic ancestry test can in
fact reveal. At the same time, it creates a clear chronological distance between the
individual test taker and the ancestral genetic test results. More importantly, however, it
incorporates what previously was a personalized genetic sample into the context of
other genetic samples. While this practice does not harm the individual (the informed
consent form explicitly notes that no identifying information can be linked to the
sample), it can result in risks for a larger group.
Population genetics creates consent risks for groups because it requires
established informed consent practices that rely on principles of individuality and
autonomy to be extended to various forms of communal consent. This is particularly
salient when population genetics is done for health practice reasons. Beskow, Burke,
65.
The Genographic Project, "Join the Global Database," IBM/National Geographic, 2007,
https://www3.nationalgeographic.com/genographic/questionnaire.html (accessed February 22,
2008, archived by WebCite at http://www.webcitation.org/5VnydlK6H).
256
Merz et al. argue that population genetics can bridge the gap between information about
genetic mutations and the use of such information to improve health practices within
specific populations.
66
To bridge this gap, they argue that informed consent language
needs to be amended in order to inform individual participants of the direct health
benefits that result from their participation in population-based genetic research.
Informed consent remains closely associated with the risks and benefits for the
individual, however. In other scenarios, the informed consent process itself needs to be
extended to a larger group. For example, extensive research has focused on the use of
genetic markers for race in assessing potential health problems of individuals.
67
In these
cases, the consent of individuals to release racial genetic markers for a population-based
study in the aggregate could lead to disparate or even unequal treatment of these groups.
Even if the effects are not harmful, the population-specific genetic data would affect not
only the individuals who gave consent but also the immediate cohort and the larger
groups with which they share genetic markers.
66.
Laura M. Beskow, Wylie Burke, Jon F. Merz, Patricia A. Barr, Sharon Terry, Victor B.
Penchaszadeh, Lawrence O. Gostin, Marta Gwinn, and Muin J. Khoury, "Informed Consent for
Population-Based Research Involving Genetics," JAMA 286, no. 18 (2001): 2315-21. See also
Chanita Hughes, Andres Gomez-Caminero, Judith Benkendorf, Jon Kerner, Claudine Isaacs,
James Barter, and Caryn Lerman, "Ethnic Differences in Knowledge and Attitudes About
BRCA1 Testing in Women at Increased Risk," Patient Education and Counseling 32, no. 1-2
(1997): 51-62.
67.
See e.g., Donald A. Barr, "The Practitioner's Dilemma: Can We Use a Patient's Race to
Predict Genetics, Ancestry, and the Expected Outcomes of Treatment?," Annals of Internal
Medicine 143, no. 11 (2005): 809-15; Alfred Schulz, Cleopatra Caldwell, and Sarah Foster,
"What Are They Going to Do With the Information?' Latino/Latina and African American
Perspectives on the Human Genome Project," Health Education & Behavior 30, no. 2 (2003):
151-69.
257
The discrepancies between individual, group, and collective consent require
adjustments to be made to informed consent protocols. Research has been done to
determine potential alternatives, ranging from participatory methods
68
to models of
communal discourse
69
and more generalized discussions of how to adapt consent
practices.
70
Many of these efforts are academic in nature and have not yet gained a
foothold in existing informed consent practices. In some instances, however, providers
of ancestral genetic testing recognize the issue and implement it into their consent
practices. The Genographic Project's ethical framework for consent states that
those responsible for giving communal consent may determine the extent (if
any) to which research findings are conveyed to the community and the form in
which this information is communicated. Where individuals provide informed
consent, then they may determine the flow of information for themselves.
71

The Genographic Project's framework focuses in genetic testing in indigenous cultures
and communities: it reveals a number of characteristics common to the indigenous
68.
See e.g., Arturo Brito, "Community Participation and Representation in Genetic Studies:
Testing the Application of Fundamental Ethical Principles," St Thomas Law Review 13, no. 4
(2001): 935-43; Stephen Sodeke, "Protecting Vulnerable Populations: Tuskegee's National
Center for Bioethics in Research and Health Care Is Helping to Pioneer Participatory Methods,"
Protecting Human Subjects 9 (Fall 2003): 8-9.
69.
See e.g., Morris W. Foster, Ann J. Eisenbraun, and Thomas H. Carter, "Communal
Discourse as a Supplement to Informed Consent for Genetic Research," Nature Genetics 17, no.
3 (1997): 277.
70.
See e.g., Lori B. Andrews, "Genetics and Informed Consent," Science 271, no. 5254 (1996):
1346-47; Debra Jackson, "Labeling Products of Biotechnology Towards Communication and
Consent," Journal of Agricultural and Environmental Ethics 12, no. 3 (2000): 319-30.
71.
The Genographic Project, "Ethical Framework," IBM/National Geographic, 2007, https:/
/www3.nationalgeographic.com/genographic/pdf/Genographic-Project-Ethics-Overview.pdf
(accessed August 1, 2007).
258
cultures that participate in genetic research and outlines requirements for consent that
accommodate these characteristics.
Despite these efforts on the civic and the market front, the problem of risks that
flow from inadequate procedures for informed consent is far from resolved. How a
language of informed consent should make room for the rights of a collective that is tied
to the individual test taker who enters into an informed consent agreement remains
uncertain. Both legally and ethically, the need to move beyond a consent model that is
primarily focused on principles of individuality and autonomy is recognized. But
balancing the rights of individuals to undergo DTC genetic testing with the rights of a
social group implicated by the individual's actions remains difficult. For population-
based genetics, problems persist with ensuring that consent rests not only with
individual test takers but with the group as a whole. Significant strides have been made
in this area particularly in terms of anthropological insight into the principles of consent
common to many indigenous cultures. Much still remains to be done, however. How to
adjust the communicative norms and practices of consent processes to match cultural
differences remains an ongoing project. And as population-based genetics increasingly
will have direct effects not only on researching indigenous populations but also on the
concrete health practices of non-indigenous populations that are socially and politically
integrated into other populations, the communicative norms that govern consent
procedures will require significant adjustments.
259
The difficulty that DTC genetics providers face in dealing with consent rests in
the stresses that the clashing languages of institutional actors puts on the communicative
norms that ground choice. As was true for physical risks, actions that cause risk
outcomes in the context of consent require justification and legitimization. The
disagreement over where to situate agency as a ground for action within the private,
medical, and regulatory institutional languages of DTC genetics makes such
justification conflicted. If the agency for making and enacting choices rests with the
individual, then considering the rights of a larger social group with genetic ties to the
individual becomes secondary. The individual person giving consent for a test thus need
not justify a choice should the test outcome carry negative consequences for the group
(generally the family, but also a larger genetically linked group). But not justifying
those actions would cause strife and disagreement between the individual and the
group.
72
Individual test takers would be at loss for how to make sense of their actions
within the context of the group they identify with, or they could be seen as violating the
rights of that group (the familial bonds, cultural ties, or ethnic identity) and thus become
stigmatized. If the agency for action is externalized and shifted to sites of expertise,
however, then responsibility for consent would be removed from both individuals and
the groups to which they belong. This would ensure that consent risks are managed and
controlled reliably, as Boltanski and Thévenot's principles for the industrial world
indicate. But it also would situate both individual test takers and their genetically linked
72.
See Boltanski and Thévenot, On Justification, 37-38, 65-66.
260
social groups in a position where they could not independently justify their actions, nor
could they exert their individual or collective rights for informed consent within social
interactions outside the world of expertise. Thus, consent risk emerges from prioritizing,
without justification, one institution's preference for where the power to make choices
should be located over another instead of considering the multiple institutional
perspectives as one, albeit contending, context from which clients can make decisions.
The nonmarket actors do not only situate the power for making choices with the
civic world. They more specifically situate it with a world of expertise, outsourcing
choice to preexisting sites of institutionalized expertise. The limitation of DTC genetics
to a technological world gives rise to privacy risks. If the identity risks of the domestic
world speak to the way in which the results of a DTC genetic test can expose, question,
and put at risk pre-established social identities, then privacy provisions seek to sequester
genetic test results from becoming exposed to these dimensions of social complexity --
unless the client whose DNA has been sequenced chooses to do involve others.
The Cost of the Technological World: Privacy Risk
The technological world. The necessary mediation of complexity through a
language of expertise is reflected in what Boltanski and Thévenot call the "industrial
world." In some ways, the industrial world parallels the market world. Boltanski and
Thévenot in fact initially collapse market and industry in their discussion of forms of
polity. Yet in other ways, the industrial world differs from that of the market. Boltanski
261
and Thévenot discuss that difference in some detail. But for the purposes of this study,
the difference between market and industrial world centers on the locus of agency.
Boltanski and Thévenot define the industrial world as a world centered around
the reliability and predictability of science: "The industrial world is the one in which
technological objects and scientific methods have their place."
73
This basic definition
situates DTC genetics firmly within the industrial world. Both technological objects and
scientific methods are not only central to the practice of DTC genetics, but also are the
gambit around which individual test takers' actions and transactions revolve: they are
the elements of the practice that give rise to the complexities that require translation into
terms and concepts understandable to a lay clientele. Yet the emphasis on a translational
component that is central to a practice of DTC genetics is not present in the industrial
world. As the aforementioned definition shows, the industrial world is a space inhabited
by technology and science. It is a place where "the ordering of the industrial world is
based on the efficiency of beings, their performance, their productivity, and their
capacity to ensure normal operations."
74

The emphasis on principles of performance, productivity, and efficiency shapes
the worthiness of persons and objects in the industrial world. As Boltanski and
Thévenot note:
73.
Ibid., 203.
74.
Ibid.
262
The quality of worthy beings, beings that are functional, operational, or (when
humans are involved) professional, thus expresses their capacity to integrate
themselves into the machinery, the cogwheels of an organization, along with
their predictability, their reliability, and it guarantees realistic projects in the
future.
75
The passage is important for two reasons. It emphasizes the quality of being
"professional" as constitutive of worth. "In the industrial world," Boltanski and
Thévenot argue, "people have a professional qualification [...] related to their capability
and their activity."
76
This focus on professionalism characterizes the languages of
medicine and legislation. The oversight reports issued by the Secretary's Advisory
Committee on Genetic Testing, for example, emphasizes a range of professional,
accredited, and appropriately titled organizations and persons as mediators of public
genetic practice. Through omission of everyone else, professionals are singled out as the
only actors (and preexisting structures of expertise as the only space) where the
complexities of genetics can be put in relation to a public practice.
77
This in turn will, or
so their argument goes, ensure that clients could make use of biotechnology within the
existing structures of the healthcare and medical institutions and systems. In other
75.
Ibid., 205.
76.
Ibid., 206.
77.
Legislative texts, in particular the SACGHS document, also hint at the problem with
shifting responsibility and agency to preexisting sites of expertise: many primary care
physicians and doctors are not yet trained or knowledgeable enough in genetics to be able to
translate the potentials and risks of this new practice for their clients. See e.g., "The Genetic
Gold Rush is On: New Direct-to-Consumer Genetic Tests Offer Information but also Risks,"
Newswise, February 19, 2008, http://www.newswise.com/articles/view/537870/ (accessed
February 21, 2008, archived by WebCite at http://www.webcitation.org/5VmSk3Ivx).
263
words, only the heuristic space of professional expertise has and should have the
capacity to integrate lay individuals into the complex practices of biotechnology.
Biotechnology in turn becomes firmly situated within the "machinery" and "cogwheels"
of existing medical organizations.
Thus, the institutional languages of nonmarket actors put emphasis on sites of
expertise for choice and decision-making that negate individual agency. Instead of
having persons acting as their own agents integrate biotechnology (or more abstractly,
objects of nature) into their existing medical- and life-practices, now persons are being
integrated into biotechnological practices as clients of expertly mediated testing
protocols, norms, and practices. Once the worthiness of beings is made dependent on
their ability to "integrate" themselves into the "machinery" and cogwheels" of existing
institutions, the locus of agency and responsibility becomes flipped. The upside of the
latter is stability and predictability: "The harmony of the industrial order is expressed in
the organization of a system, a structure in which each being has its function, in short, a
"technically predictable universe."
78
As a core principle of science, a "predictable
universe" ensures harmony. It ensures that persons and objects have a clearly defined
function and purpose. If persons and objects produce, they are considered worthy;
"when they are unproductive," they are considered unworthy.
79
In terms of agency, the
possibility for choice and action is given over most fundamentally to the sphere of
78.
Boltanski and Thévenot, On Justification, 210.
79.
Ibid., 205.
264
expertise: judgment and justification of actions is made only in relation to their
productivity and integrality to a preexisting system. Once persons and objects act
outside these principles of worth (when, for example, they see their action as part of
another world), the "harmony" ensured by a predictable universe yields to disharmony
and disagreement.
The shift in agency from individual or public to sites of expertise is
accompanied by a shift in responsibility. The following passage illustrates a number of
critical concepts to the notion of agency:
It is in a relation of control that the state of worthiness encompasses the state of
unworthiness. The word responsibility may be ambiguous here, because it also
serves to designate the relation of domestic worth. However, the industrial
responsibility of the worthy person does not imply that he has power over a less
worthy person who owes him respect in return. The control one exercises
depends only on the possibility of predicting less complex actions by integrating
them into a larger overall plan. A more worthy person is in relation with a less
worthy person primarily through the "responsibility he assumes" for production,
by the control he has over the future: "To determine the future accurately in
order to control it is an indispensable task [...].
80
The sense of individual responsibility as a principle of the domestic world is flipped
here. In the domestic world, responsibility lies with individual persons and extends to
those (within a family or social group) who are hierarchically inferior to that person. In
the domestic world, responsibility thus is directed inwards: it is people within one's own
family or social group for whom others are responsible. In the industrial world, the
opposite is true: responsibility is directed outwards. Responsibility relates to the
80.
Ibid., 209.
265
production of goods, and to the ability to manage and control actions within a
preexisting structure.
This new locus of responsibility is what the nonmarket actors argue for. The
SACGHS document shows explicitly how a new (biotechnological) practice needs to be
integrated into preexisting structures of institutional expertise. Responsibility should
rest with those structures, and with individual persons only insofar as they are required
to be made part of what Boltanski and Thévenot call the "larger overall plan." The
outsourcing of agency, and thus of responsibility, from individual persons and even the
collective will of a public to larger institutional structures of expertise may lead to a re-
framing of people-as-individuals into people-as-objects: as Boltanski and Thévenot
note, "[i]n the industrial world, the distinctive dignity of humanity is threatened by the
treatment of people as things."
81
At the same time, however, it ensures a state of
reliability and control of the future that a world in which agency is located solely with
the individual could not claim. This notion of control is a central point of contention
that puts at risk issues of privacy.
Privacy risks in the technological world. Because many of the previous risks are
connected to the exposure of genetic information to a social space, privacy
considerations traditionally have been foregrounded in genetic testing. Indeed, in
legislation, privacy risks garnered most attention in the early days of applied genetics
legislation (frequently at the expense of risks like identity). The sustained attention
81.
Ibid., 211.
266
given to issues of genetic privacy is not unexpected. Privacy is a central issue for
bioethics and biotechnological practices in general: the dominant decision-making
frameworks that emerged out of institutional moments like the creation of the Belmont
report emphasize that choices and actions within a biotechnological practice need to be
autonomous and controlled by the individual. A practice in which individuals undergo
DTC genetic testing, however, is rarely exclusively individual: as prior chapters have
shown, both the mathematical and the social complexity of genetic science necessarily
involve other persons and other institutional sites in a practice even as personalized as
DTC genetics. Privacy risks exemplify the problem of institutional tension: by
definition, privacy risks arise when information about the self transgresses the
boundaries of the self into territories in which the individual person would not want the
information to be present.
The practice of using DTC genetic technology poses risks to privacy because of
the staggering amount of information encoded in a genetic sample. A typical sample
includes numerous cells, each of which contain 23 pairs of chromosomes, each carrying
supercoiled DNA strands built with between 2968 genes on the first chromosome to 288
on the 22nd (even less, 231, on the male-only Y chromosome). Each gene contains
thousands of nucleotide base pairs, many (but nowhere near all) of which -- so-called
"exons" -- contain the information necessary to build proteins responsible for our
physical similarities and differences. Even if a given test sequences only a very short
range of genes, the sample nonetheless contains the entirety of the person's genome;
267
frequently, even the small sample analyzed could lead to privacy issues that are either
in- or outside the frame of expectation set by the informed consent document.
In the case of applied genetics, the wide range of information encoded in a
genetic sample, coupled with the necessary involvement of multiple common worlds in
the genetic practice, can contribute to social stigmatization or institutional exclusion.
Consider, for example, the insurance business. Insurance long has been a sticking point
for those who worry about privacy issues in the context of genetics. The inclusion of
genetic information into the traditional risk calculations of insurance carriers would,
they argue, alter the formula in ways that disadvantage individuals and impinge on their
rights to privacy.
82
Existing risk evaluation frameworks in the insurance business
require clients to disclose known health issues. This practice impinges on individual
privacy rights within well-defined bounds, but does so consciously and with the full
consent and knowledge of the individual in exchange for the insurance product.
Information about the self thus does not transgress the boundaries of the self
unexpectedly. Rather, it is revealed with the full consent of the individual.
Genetic information complicates this framework. Incorporating genetic
information into the insurance process would require clients to disclose not only
existing health issues. Instead, they would need to submit their susceptibility toward
potential and eventual health issues. This is first problematic because of the contingent
choices involved in genetic testing. The central difference between genetic diagnosis
82.
See e.g., Harmon, "Insurance Fears Lead Many to Shun DNA Tests."
268
and traditional diagnostic technology is a chronological one: where for the latter the
presence of a disease-causing agent and the disease are chronologically similar or the
same, for the former, the presence of a disease-causing mutation only indicates future
disease. Most importantly, the future onset of a disease is not certain (with a few
exceptions). Equations for determining insurance rates and coverage thus would need to
include diseases that are always in the future and often only possibilities rather than
certainties. Incorporating environmental factors that the client could control (e.g., diet in
response to a positive cancer risk-assessment test) would ameliorate the problem, but
not solve it. Second, the use of genetic information in insurance practices is complicated
because it exists in a grey zone in terms of informed consent rights. Following the
earlier discussion of consent risks in this chapter, a common issues would include that
individual persons often are be unaware of precisely how much information about
themselves they release with their genetic information. Furthermore, they frequently are
unaware that with their own sample, they are releasing potential genetic information
about siblings and family members. Thus, where traditional insurance practice involves
relinquishing a certain degree of privacy protection, the use of genetic information
could allow for information to transgress into the institutional space in which insurance
operates without the individual's full consent and knowledge. Genetic privacy risks are
269
not limited to issues of insurance and also can impact a multiplicity of institutional sites
like the family, the workplace, or even religious practices.
83
The contested nature of who gets to control their genetic information may be
best exemplified by a brief exchange that took place during the 2006 Senate hearings.
Chairman Gordon Smith asks Howard Coleman, founder and CEO of Genelex, the
following question: "Should I be worried, Howard, about the privacy of your
customers?" To which Coleman responds:
Well, I would say that coming to a company like ours is a way for you to protect
your privacy. If you go to your doctor and order one of these tests, then you
don't have control of that information. That has gone into the health care records
system, and HIPAA notwithstanding, I think people have concerns about the
security of that information. If you come to a company such as ours, then that
information will remain secure. It is your property and short of a court order, we
under no circumstances would release that information to anyone.
84
This exchange mirrors many of the argumentative turns between the languages of
market and nonmarket actors. The former believe individuals to be capable, if not
superior at handling and managing genetic information; the latter believe preexisting
sites of expertise such as legislation or healthcare to be critical intermediaries in
handling and managing such information. Here, the market language situates agency
with the individual, trusting both its own capacity to successfully communicate complex
83.
Because of the range of privacy risks that can affect the genetic practices of individuals,
privacy protections have been a central concern of legislation. Legislative texts all deal with
privacy in one way or another, and GINA undoubtedly has been a large step in the right
direction. GINA, however, does not end the discussion about privacy risks, as it still excludes a
range of possible privacy risks from its purview (see Chapter III, footnote 5).
84.
Senate Special Committee, At Home DNA Tests, 94.
270
genetic information to lay clients, and the clients' ability to control that information. In
fact, as Coleman implied at other points as well,
85
not only are individuals capable of
controlling their own genetic information, but institutions like healthcare, insurance, or
legislation in fact are not capable of doing so (or, at least, individuals do not trust them
to be capable enough). The nonmarket languages do not trust the communicative
practices of the market, and instead try to situate control over communicating and
disseminating genetic information to preexisting sites of expertise. Thus, agency and
responsibility as grounds for actions in and across multiple institutional spaces remain
contested and contingent.
With a multiplicity of institutional perspectives constituting the practice of DTC
genetics, genetic privacy risks result from the unintended transgression of genetic
information from one institutional site (the personal) into another (like family, insurance
business, work, religion, or healthcare). Thus, giving clients the power to control the
intentional rather than unintentional transfer of genetic information is central to the
legitimate integration of DTC genetics into the life choices of individuals, families, and
collectives. Such control requires knowledge of the complexities of genetics as they
relate to existing social structures and, thus, help determine what information should be
shared and what should not. Stresses put on the communicative practices that situate
genetic complexities in relation to these social structures make such knowledge difficult
to come by. In other words, control over genetic information requires communicative
85.
cf. analysis of the Senate hearings.
271
practices to find a shared locus of agency that can stabilize communicative norms and
provide grounds from which clients are able to knowingly assess and distribute their
genetic information.
Market, domestic, civic, and technological worlds are not the only ones in which
institutional languages of DTC genetics can be situated. The remaining two common
worlds identified by Boltanski and Thévenot are not explicitly referenced in the
respective institutional languages. They exist as traces in the background of the
institutional discourses of DTC genetics, however, and could resonate more strongly
with DTC genetics or related biotechnological practices in the future.
The Missing Worlds
Two of Boltanski and Thévenot's common worlds remain missing from this
exploration of how the practice (and language) of DTC genetics situates itself within the
common worlds. These are the "Inspired World" and the "World of Fame." The former
defies categorization within the framework of rhetorical agency, at least according to
Boltanski and Thévenot:
The reductive power of the polity model and the critical figure that expresses it
are absent from an Eden in which private goods have no place, no reason for
being, even though they are dealt with in general, as in "epideictic" rhetoric.
"[A]mplification is most suitable for epideictic speakers, whose subject is
actions which are not disputed, so that all that remains to be done is to attribute
beauty and importance to them" (Aristotle, Rhetoric, 1368a.40).
86
86.
Ibid., 78.
272
This is not to say that the principles of the inspired world are lost to a biotechnological
practice of DTC genetics. There remains a sense of ontological grounding and recourse
to the self in DTC genetics
87
that strongly resonates with the principles Boltanski and
Thévenot outline for this world. In a negative sense, bioengineering and eugenics may,
in some circumstances, be part of this world, but in the discourse of DTC genetics, both
appear only as traces. The inspired world exists outside a polity model in which social
inter-actions take place (and require justification), however. A comparison of the
inspired world and its principles to the practice of DTC genetics remains a project well-
worth doing but outside the scope of this particular study.
The world of fame is more complicated because in many ways, its principles
contradict the principle of personalization that drives the practice of DTC genetics.
Where individual persons in a world of fame seek public approval through the
persuasion of or identification with audiences,
88
applied genetics is a highly
personalized practice shared only within tightly controlled institutional boundaries and
privacy protections. There is, however, a place for the world of fame in the ancestry
genetics market. There, promotional materials for DTC ancestry tests promise a sense of
biological identification with audiences that are thus far unknown to the test taker, and
87.
This sense of ontological grounding that differentiates a genetic practice from other
traditional medical practices also surfaces is in the SACGT document that notes the
"widespread perception that these tests are different and that people experience genetic testing
in a way that is dissimilar to the experience of other forms of medical testing."
88.
Boltanski and Thévenot, On Justification, 181.
273
can be made known only through taking the test. Furthermore, some providers of
genetic ancestry tracking advertise the possibility of gaining the knowledge that one's
DNA is related to famous historical figures: Attila the Hun, or Thomas Jefferson, for
example.
Both these claims that would link ancestry tracking to the world of fame are
genetic fallacies, however -- at least to date. They are used primarily as a form of add-
on promotional incentive for getting people to purchase tests for their primary purpose.
the explanatory language of the Genographic Project shows that the claim that an
ancestry test can provide knowledge of the existence (and relation to) specific
individuals thousands of years ago remains outside the scope of genetic testing and
ancestry tracking. And at least to date, no genetic test can prove a direct relational line
between a test taker in the early 21st century and as illusive a historical figure as Attila
the Hun. The world of fame cannot be discarded quite as easily, however, as the growth
of genetic ancestry tracking now spreads increasingly widely and thus one day
realistically could claim to be able to link individuals to biologically related audiences.
To date, however, the reach of any one genetic ancestry company or project is too short
for such claims.
89
Excluding the two shadowing worlds that appear only as background traces
behind the mainstream practices of DTC genetics, this chapter draws parallels between
Boltanski and Thévenot's common worlds and the discourses of DTC genetics to argue
89.
See Chapter V for a brief discussion of genetic social networking, however.
274
that they reflect a range of grounds that compete and cooperate in the creation of
justifications. In many ways, the discourses differ from the common worlds: the market
world, for example can be markedly different from the market discourses of DTC
genetics, just as other worlds, too, can point toward a number of principles that have
little in common with the languages of DTC genetics. Instead, the chapter draws these
parallels to emphasize that how institutional languages situate agency in relation to
genetic complexity can be read through the framework of "common worlds" set up by
Boltanski and Thévenot. This lens accentuates how the failure of institutional actors to
find common ground for communicative practices leads to failure in framing genetic
complexity in relation to existing social practice, thereby magnifying complexity and
increasing risk.
Thus, the "common worlds" identified by Boltanski and Thévenot function to set
common contexts for the institutional heuristics of DTC genetics -- but they do so
uniquely and narrowly, with specific common worlds aligning themselves with specific
institutional languages. This narrowness becomes problematic when the loci of agency
and responsibility for actions are dispersed across multiple common worlds and when
those worlds compete over where to situate responsibility and, in turn, over the
principles used to make, enact, and justify actions. The contested natures of agency and
responsibility that emerges from how multiple, polysemous institutional actors address
genetic complexity is problematic because the contending institutional languages
275
provide discrete, singular norms of communication for framing genetic complexity in
relation to social practices.
The incompatible institutional languages of DTC genetics are problematic
because they expose clashes within an institutional framework for justifying actions.
These tensions speak to issues of justice and rights: if the justification of an action is a
right of individuals engaged in a social interaction, then the inability (or unwillingness)
to justify actions leads to injustice and violates the rights of both individuals and social
polities.
90
Following Boltanski and Thévenot, this type of "injustice" is common, as
disagreement over where to situate and justify an action is a frequent characteristic of
social interaction. The next section explores how Boltanski and Thévenot argue that
compromise can soften such disagreement, and it argues that such compromise is not
possible between the polysemous, contending institutional languages of DTC genetics.
Communicative Norms for Best Practices in Biotechnology
The struggle over where and how to situate agency is fought out through the
languages of the multiple institutional sites. Market, legislation, medicine, and public
advocacy groups all have a stake in creating communicative practices that situate the
complex, contingent choices enabled by genes and genetics in ways that best relate
them to the existing lives of clients. They all agree that such communicative practices
are integral to making DTC genetics a meaningful and responsible practice. The ways in
90.
Ibid., 37-38, 65-66.
276
which these institutions choose to communicate and make sense of complex genetic
science -- or choose to outsource this requirement to preexisting sites of expertise --
differs, however. Their lack of common ground leads to communication complexity that
makes difficult the justification and legitimization of actions and choices. Deficiencies
of justification give rise to risks, as they impact the necessary interactions between
individual test takers and their families, healthcare providers, insurance carriers,
employers, religious practices, or other institutional sites that are or soon will be integral
to a practice of DTC genetics.
For Boltanski and Thévenot, disagreement over how to justify an action need not
create irresolvable deficiencies but instead can lead to a compromise that brings worlds
together. They note that "composite arrangements that include persons and things
capable of being identified in different worlds are not fatally undone by disputes."
Instead, they can compromise: "In a compromise, people agree to come to terms, that is,
to suspend a clash -- a dispute involving more than one world [...]."
91
Thus, for
Boltanski and Thévenot, compromise is a critical move for the interactions of social
actors that always and necessarily move between the boundaries of common worlds and
encounter disputes and clashes between their grounding principles. In the world of DTC
genetics, however, no such compromise has been possible thus far: the pragmatic
constraints of market forces, legislative rules, or medical and public advisories are and
remain irresolvable.
91.
Ibid., 277.
277
Compromise is difficult to achieve where the locus of agency as a grounding
principle of choice is contested. Indeed, the different possibilities for compromise that
Boltanski and Thévenot outline are not reflected in the languages of DTC genetics.
Reading the existing texts through which institutions relate genetic complexity to social
practice, the clash between market and nonmarket languages indeed may be
irresolvable, as disagreement over who has the power to choose as a ground for action
renders them incompatible. Such a conclusion may indicate that Boltanski and
Thévenot's six worlds are too limited as contexts for interaction, and require the
addition of a common world that sets a unique context for biotechnological practice.
Absent such an addition,
92
however, what remains are vocabularies and grammars that
clash over where to locate agency, and thus the responsibility for making and enacting
choices.
This persistent and seemingly irresolvable clash, I argue, makes the case that in
biotechnological practice, norms for state-of-the-art communication cannot and should
not be reduced to singular institutional perspectives. Instead, what this chapter has
shown is that at its best, state-of-the-art communication in biotechnology must consider
the stresses put on the communicative practices of polysemous, contending institutional
92.
I do not mean to gloss over this possibility by not addressing it here. Re-thinking the scope
of the six common worlds and theorizing a seventh -- maybe a biotechnological world that, by
its very name, could make a space for issues of biological and non-biological actors alike -- is, I
believe, an interesting proposition that deserves more thought. For the purview of this study,
however, I merely wish to show that the means of compromise discussed by Boltanski and
Thévenot for their six common worlds do not resolve the tensions among the institutional
languages of DTC genetics.
278
languages that seek to situate the disruptive complexity of new scientific findings within
the previously stable norms of social practice. If the core function of communication is
at its etymological root the creation of a communitas, and if the stresses and clashes that
multiple, isolated institutional languages put on communicative practices magnify
complexity rather than reduce it and, thus, expose individuals and publics to risks, then
norms for state-of-the-art communication in biotechnological practice must draw from
the evolving symbolic and material conditions of change caused by unknown, complex
elements of the environment that give rise to new risks and destabilize norms of
conventional practice.
This requirement is a critical cornerstone for communication in biotechnological
practice. If indeed the core function of communication is the creation and maintenance
of a communitas, then ignoring the stresses that singular institutional norms put on
communication exposes individual clients to risks of not knowing how to, or not being
able to, maintain the practices that anchor their individual, familial, and public lives
across multiple institutional sites. Existing rights and practices that ground interactions
(the principles of worth and justice, to use Boltanski and Thévenot's terminology)
within various social sites (family, work, healthcare/medicine, etc.) are destabilized,
questioned, and put at risk.
State-of-the-art communication in biotechnological practice thus is aware of and
recognizes the stresses put on the norms of communication that frame complexity in
relation to social practice. Stresses put on communication by the various institutional
279
sites and languages involved in a biotechnological practice are too significant to ignore,
as they expose clients to risks. In considering conventions of communication as
complex and contested, norms that ground state-of-the-art communication open a space
within which contending voices can meet, find common ground, and respond to the
constantly evolving changes and continuously emerging consequences of new
biotechnological findings. State-of-the-art communication thus does not so much reduce
the complexity of choices and possibilities that the integration of genetic biotechnology
opens as it matches this complexity with complex communicative practices that increase
possibilities for choice, action, and interaction.
The conclusion that follows argues that successful implementation of such state-
of-the-art norms of communication requires a rhetorical understanding of
communication-as-practice that recognizes how agency is vested in language and
situated and contested between different institutional sites. This understanding of
agency is particularly critical as new and wide-reaching biotechnological practices are
beginning to emerge from the currently small reach of DTC genetics. In particular, the
conclusion asks what implications communicative risks carry not only for an existing
practice of DTC genetics (as this chapter has begun to outline), but also for a future
where these biotechnological practices will extend into full-genome sequencing,
pharmacogenetics, web 2.0 and genetic social networking, and more.
280
Chapter V
Implications & Conclusion
This dissertation argued that rethinking the language and the communicative
norms of DTC genetics is critical to its legitimate, informed integration as a practice
into the lives of individuals, families, and publics. As DTC genetics has spread over the
last few years, the various institutions involved in mediating its integration into the
social space have established partial communicative norms for translating the complex
nature of genes, norms that constitute state-of-the-art communication within the distinct,
singular institutional perspectives from which they evolved. The languages of these
institutions relate the complex nature of genes to the medical and social practices of
individuals, families, and publics and extend to them a sense of agency for engaging
questions of whether or how to make DTC genetics to social actors. These languages
have grown to stand in external contention with each other, however. No inquiry,
academic or otherwise, has considered what implications the clash between institutional
languages over communicative practices has on lay publics.
The dissertation argued that the recovery of human agency in DTC genetics
requires that norms for state-of-the-art communication are drawn from polysemous
institutional languages. Market and nonmarket actors each have created heuristics that
within their own, distinct institutional perspectives represent forms of communicative
best practices to recover agency and translate complex genetics into the personal,
281
familial, and public space. What counts as a legitimate form of agency within each
institutional context differs, however. Critical intervention through analysis of
assumptions about human choice-making and agency is required to assemble the
fragmentary, polysemous institutional languages into a broader context and consider
what stresses the clash, tension, and incompatibility among these contexts for choice
puts on conventions of communicative practice. How results are communicated to
clients is critical for the legitimate integration of important new genetic biotechnologies
into the life choices of individuals and publics and for establishing and maintaining the
legitimacy of the institutional actors that mediate the introduction of complex genetic
technology into public practices.
This point of view shifts attention not to what is scientifically doable in terms of
biotechnological practice but to what norms for state-of-the-art communication are
necessary for a biotechnological practice to integrate and sustain itself within the
preexisting practices of a social space. These communication norms, the study shows,
structure, ground, and negotiate choices enacted by individuals and publics. In that
sense, this study provides a necessary rhetorical complement to the scientific
discoveries and insights that fuel emerging biotechnological practices: it argues for the
importance of considering the language of a biotechnological practice as integral to its
reshaping of social practices. Critical analysis of how language affects biotechnological
practice intervenes in fragmented institutional languages to imagine and shape a space
within which new biotechnologies can become part of the lives of people.
282
This last chapter summarizes the study's key steps to make a case for what
constitutes norms of state-of-the-art communication in biotechnological practice. It
reviews the current state of communicative practice in DTC genetics and examines new,
emerging biotechnologies that increase the complexity of DTC genetics and thus
accelerate the critical task of comparison, assessment, and development of norms of
communication. The challenges posed by these new technologies extend the need for
recovering human agency through state-of-the-art norms of communication beyond
DTC genetics toward biotechnology generally. In the end, this chapter recommends
"rhetorical fora" as normative contexts for addressing the continuous challenges and
responding to the unintended consequences of DTC genetics and, more generally, as a
basis for vesting agency in language beyond the particular configurations of applied
genetics.
Synopsis: Conventions of Communicative Practice in DTC Genetics
The study began with a rhetorical problem that posed itself as a gambit to
market providers of DTC genetic services and nonmarket actors alike. These
institutional actors had in common a desire to introduce DTC genetics as a safe,
legitimate biotechnological practice into the lives of people. Given the mathematical,
probabilistic complexities that underlie genes and genetic technologies on one hand, and
the social and moral and ethical uncertainties that can emerge from the probabilistic
complexities on the other, the institutions involved faced the question of how to relate
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genetic complexity to the existing social practices of their clients. This rhetorical
problem was made more difficult by genetic determinism and underdeterminism. Both
distorted the understanding of how the presence of a genetic mutation is linked to the
eventual presence of a specific outcome, be it disease, knowledge of an ancestral past,
or other information encoded in DNA. And both were alike in removing human agency:
if genes were either directly and immutably linked to a future outcome, or if genes had
no bearing on the future, then individuals who had knowledge of their genes had little
agency and possibility to shape their future.
In reality, the link between the physical presence of a mutation and a directly
measurable outcome is complex because it is contingent: genetic mutations in most
cases only can indicate susceptibility to diseases, for example. Both determinism and
underdeterminism distort this contingent link by reframing it as either radically certain
or uncertain. Thus, a core requirement for state-of-the-art norms of communication is to
find ways of relating to genetic complexity by communicating to lay clients the
contingent, uncertain nature of what genes and genetic technology are capable of
conveying. In so doing, language acts to restore a sense of agency and thus a possibility
for making autonomous choices to individuals who are thinking about, or have
undergone, genetic testing.
How the different institutional actors approach this core communicative
requirement differs, however. First, the market's language grounds agency in increased
knowledge that leads to more individual power. The market makes use of rhetorical
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tropes, frames, and concepts to communicate the contingent nature of genes and restore
a sense of human agency. Moving through three communicative steps that are common
to nearly all DTC genetic services (informational, transactional, and evaluative), texts
employ synecdoche, comic frames, diachronicity, metaphors and narratives, and a
sensibility toward rhetorical situations to frame genetic complexity. By framing the
physical, material nature of genes as contingent and uncertain, these market languages
counteract some of the distorting effects of genetic determinism and underdeterminism.
In so doing, they situate the agency, possibility, and responsibility for choices firmly
with the individuals who, armed with the newfound and newly accessible knowledge of
their genes, now are empowered to redirect and reshape their lives.
Second, regulatory bodies ground agency in preexisting sites of expertise.
Legislators, medical organizations, and public advocacy groups, too, seek a voice in this
new biotechnological practice. Nonmarket actors are concerned with how a market
language that frames genetic complexity in the context of social practice can harm
rather than empower clients. In response, nonmarket actors seek to regulate and reshape
communicative practices; not to the end of denying that the relationship between
genetic mutations and measurable effects are uncertain and contingent but to the end of
turning the tables and arguing that the communicative conventions of market providers
endanger rather than empower individuals. The agency that the market had situated with
the individual thus is shifted first to a public, communal model of deliberative agency
285
and then quickly to one where the power to make choices is outsourced to preexisting
institutional sites of expertise.
Third, the residual state of agency is polysemous and conflicted. Articulating
spaces in which agency can be enacted is particularly important, as common beliefs
about genetic determinism and underdeterminism remove the power for making choices
from individuals, families, and publics. Conflicted loci of agency have normative
effects: locating the power to make choices with the individual enables benefits and
risks that are significantly different from the kinds of benefits and risks enabled by how
nonmarket actors situated agency. Thus, the contested locus of agency puts stresses on
the communicative practices that situate genetic complexity in the contexts of social
practice, thereby magnifying complexity and risk.
As these stresses remain unaddressed and unresolved, no stable ground exists for
clients from where choices can be made, actions grounded, decisions justified, and
results integrated into their lives. The reluctance of discrete institutional languages to
find shared, common ground situates complex communicative conventions within
distinct contexts but ignores the polysemy of institutional contexts that constitute the
practice of DTC genetics and that stand in external, unresolved contention with each
other. The lack of shared communicative practices increases perceptions of genetic
complexity and exposes clients to risks of physical harm, consent, identity, and privacy.
Thus, the increased complexity brought about by conflicting grounding trajectories of
communication destabilizes the possibility of a communitas grounded in communicative
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practices that create and maintain relations between individuals across multiple
institutional sites. Clash among institutions over how to frame genetic complexity
extends complexity to communication and asks for new norms for communicative
practices that can ground the legitimate and safe introduction of this new, complex
biotechnology into the social space.
The relevance of searching for norms for state-of-the-art communicative
practices in DTC genetics extends beyond the narrow confines of the field as it exists
today. Already, new applications are emerging that are widening the scope and the
reach of what genetic technology can do. Given the benefits of these applications, it is
only a matter of time until they (along with the more traditional DTC technologies
analyzed in this study) will be used widely in medical and social practice. On the next
pages, I introduce four emerging genetic biotechnologies that will accelerate
communication complexity and challenge common understandings of communicative
best practices: full-genome sequencing, genetic social networking, direct advertising,
and pharmacogenetics.
Emerging Developments in DTC Genetics
DTC genetics is still at an early stage of development and use. Much of this
study restricts itself to fairly traditional, easily accessible applications of DTC genetic
technology. The tests analyzed in this study relate to services that sequence short
strands of the human genome, are processed in laboratories, and reveal specifically and
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narrowly circumscribed information to the client. Recent developments reveal a range
of new facets to this practice, however. The most predictable of them is made possible
by a growing knowledge of genetic markers and increased sequencing capacity at a
lower price: full-genome sequencing. Others, like the integration of genetic information
into social networking or pharmacogenetic applications of genetic information widen
the benefits but also introduce new risks. The first of these is the one closest to the
existing practice of DTC genetics, but it also represents a significant amplification of
the possibilities offered by the traditional forms analyzed in this study. This new
practice is full-genome sequencing
Full-Genome Sequencing
The current state of DTC genetic testing is limited by the sequencing technology
and by the cost that individual customers are willing to pay for a test. Sequencing
technologies and practices that can sequence an entire human genome, or large parts
thereof, are available. But sequencing an entire genome remains prohibitively expensive
for small companies or labs that sell genetic tests. Thus, tests generally look for only
one specific disease, genetic lineage, or other type of information that can be identified
by a limited set of genes.
New companies that purport to offer more wide-ranging genetic tests have
surfaced recently. These companies offer genetic testing for not only one, but a wide
number of diseases. Their goal is to move the practice of DTC genetics from a
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specifically targeted diagnosis that only reveals narrow insight into health or various
non-health information to one that can provide clients with a comprehensive profile.
Such a profile would include information about a wide range of diseases (or
susceptibility to diseases), ancestral information, and other information. The logic
makes sense: each sample submitted by the client always contains the entirety of the
human genome, the genomic map that links genetic mutations to diseases, ancestral
patterns, drug resistance, and more is growing every day. Given the increasing
availability of high-powered sequencing technology at increasingly lower prices, such a
practice would take full advantage of the client's sample and the information embedded
in it.
Thus far, three companies have established themselves at the helm of full-
genome sequencing. 23andMe (http://www.23andme.com) is among the most
prominent ones. Founded in 2006 with significant startup capital from search engine
giant Google and biotechnology firm Genentech, 23andMe is located in Mountainview,
California, in the heart of the Silicon Valley. For $999, 23andMe analyzes a range of
genes linked to conditions from prostate cancer to lactose intolerance. The results
become part of a "Gene Journal" that chronicles the findings, calculates odds and
probabilities, and puts the information into the context of environmental and other risk
factors. In addition, 23andMe sequences ancestry data and traces a "genetic family
portrait." Another contender, Navigenics (http://www.navigenics/com), is based in
Redwood Shores, California. Scheduled to start offering its services in April of 2008,
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Navigenics' service will cost $2500 and include counseling for a year.
1
The company's
labs scan 2 million markers, and while not all of these yet have been linked to known
diseases, Navigenics will offer an annual subscription model that updates clients whose
genomic information is on file if and when new links between genes and diseases are
found. Navigenics even has branched out from the internet to the brick-and-mortar retail
front: its shop in New York's SoHo district offers the same services as its website, but
provides potential clients with a more personable space in which they can inform
themselves and purchase the tests.
2
The third service, deCODEme (http:/
/www.decodeme.com), is one of the few publicly traded DTC genetics companies.
Based in Iceland, it charges $985 to scan over 1 million genetic markers and calculate
genetics risks for 23 diseases. It, too, offers ancestral information alongside health
information, and promises to keep its clients updated with future research and
knowledge into how specific genes are linked to known diseases.
None of these companies sequences all of the roughly 3 billion nucleotide pairs
that comprise the human genome. With the exception of Knome (http:/
/www.knome.com), a Cambridge, Massachusetts company that offers true full-genome
sequencing at a cost of $350,000, these new service providers limit their sequencing
1.
Marcus Wohlsen, "Doubt Hangs Over Personal Gene Scans," Associated Press, 2008, http:/
/ap.google.com/article/ALeqM5iDW3kSvfk2vyqo5b8M3kyLTnSbNAD8VOHUGG0 (accessed
April 1, 2008, archived by WebCite at http://www.webcitation.org/5Wle5A8SV).
2.
Patrick McGeehan, "On the Retail Frontier, Another Shop in SoHo for the Person Who Has
Everything," New York Times, April 13, 2008, http://www.nytimes.com/2008/04/13/nyregion/
13dna.html (accessed May 9, 2008).
290
services to the genes that are best known, and to sequences of the genome that likely
will yield relevant information in the future. Still, the range of genetic markers analyzed
far surpasses that of the more readily available tests popular at the time of writing. The
number of genes analyzed by these new companies introduces a significant benefit.
Health information gained from them is broader than anything that current DTC
genetics companies can provide. Instead of a specialized, targeted test, clients now can
gain access to a panel of health information that can include information about
susceptibility to dozens of diseases and other genotypes. This number only can increase:
with up to 2 million genetic markers on file and new research continually finding new
connections between genotypes and diseases, genetic subscription models will provide a
constant stream of new health information.
These new possibilities magnify communication complexity and open spaces for
new risks to emerge. For consent especially, receiving updates about how new
discoveries of genetic mutations reflect on the client's genome on file with a DTC
genetics provider stretches the boundaries of existing informed consent processes. For
issues of physical, identity, and privacy risk, the large number of genes these new
companies can sequence magnifies existing risks. Where current heuristics for framing
genetic complexity in relation to social practices must deal only with a limited number
of genes, the possibility of sequencing 2 million or more nucleotide pairs calls for a far
more thorough and detailed heuristic effort. Beyond these immediate concerns,
extensions to how these new applications can be put to use warrant attention.
291
Sequencing large numbers of genes allows for cross-referencing genetic information to
existing health, familial, and social practices. It is no coincidence that Google has
provided significant financial backing to 23andMe, for example. The possibility of
sequencing and indexing millions of personal nucleotide pairs and a quickly growing
amount of genetic information necessitates powerful search algorithms that can sift
through the biological information. Moreover, search algorithms will play a key
heuristic role, too: they can first link complex genetic data to information that is
understandable for lay individuals and second link genetic data to a wider pool of
existing knowledge and practices that include health issues, family issues, or social
issues.
3
Full-genome sequencing is an amplification of existing DTC genetics: wider and
more powerful in scope, but in terms of its procedures and technologies much alike the
tests considered for this study. The next emerging technology, too, is in some ways an
amplification or extension of existing DTC genetic technologies. This new application,
however, adds new elements to existing practices: genetic social networking adopts the
framework of genetic genealogy, and combines it with popular web-based social
networking practices.
3.
As a magnification of the DTC genetic services analyzed in this study, full-genome
sequencing magnifies complexity and introduces risks of physical harm, identity, consent, and
privacy; thus, analysis of communicative practices in full-genome sequencing must consider all
four of Boltanski and Thévenot's shared contexts: market, domestic, civic, and technological.
292
Genetic Social Networking
The confluence of biotechnology, algorithms for searching and linking
information, and the existing health, social, and familial practices of individuals and
groups extends beyond full-genome sequencing to DTC ancestry tracking. Genetic
ancestry tracking generally focuses on the individual person's ancestral information.
Most genetic ancestry services also offer some form of aggregate genetic information.
The Genographic Project, for example, allows clients to participate in a larger study
about human migration patterns. Others, like Family Tree DNA, provide "surname
projects" that match clients with others that share their last name and check for genetic
ancestral relations within a shared surname database. Or, they offer services that
compare the client's DNA against that of Thomas Jefferson, Genghis Khan, and other
historical characters to unearth distant relations. These more communal applications are
generally limited, however, and do not constitute the main focus of these services.
The secondary emphasis on aggregate uses of genetic information increasingly
is making way for communal, shared uses of genetic information as the primary focus
of DTC genetic ancestry services. Companies like Genebase (http:/
/www.genebase.com) and, more recently, Genetree (http://www.genetree.com) focus on
individual genetic ancestry, but with a twist: they integrate genetic ancestry information
into a kind of familial social networking project. Genebase's genetic genealogy service,
for example, provides the standard Y-DNA and mtDNA testing options but integrates
the information they yield into an online software ("bionet builder") that features all the
293
amenities of social networking: profiles, blogs, photo sharing, and more. Genebase
integrates those features with the genetic information from its DNA Ancestry Project
and allows clients to build their own genetic family tree. Direct relatives who participate
in the project are linked to the primary client through traditional social networking ties.
Distant relatives can be found through a search engine that matches the client's
haplogroups to those of others who participated in the project. These searches can be
refined in various ways: by geographic origin, by surname, by how many genetic
markers overlap, or by genetic distance.
The integration of genetic data into existing social networking frameworks
seems a logical extension of more traditional DTC ancestry services. The latter use
biological information to complement or replace traditional genealogy practices that
previously had served as the cornerstone of family identity. The former uses biological
markers to link people that in traditional social networking had been linked through
social categories, classifications, and labels. The potential of genetically based social
networking thus is considerable, as it allows individuals to discover others with shared
biological rather than just social and cultural markers. Instead of using for example
favorite books to search for people to associate with, this new application of DTC
genetic technology allows individuals to search for people to associate with based on
familial relations. Whether these relations are close (high overlap of haplogroups) or
distant (less overlap) is left up to the client.
294
The ease with which genetic social networking can be implemented into
traditional forms of social networking poses some risks, however. Genetic social
networking services try to frame their products as playful and easy to use, frequently at
the expense of going through the heuristic motions that would communicate a clear
understanding of the underlying technology. The social component generally is well-
known, as the very premise of genetic social networking rests on its potential to make
biological links between individuals. Yet, the emphasis on social linage amplifies
identity and privacy risks. Two siblings, for example, could both sign up for a genetic
social networking site in order to find distant, biologically related family members.
These two siblings could just as easily see that in their search, their own genetic
information does not overlap as much as it ought to -- or not at all. The resulting
questions about paternity in the former case and adoption in the latter undoubtedly
would have an impact on personal and familial identity. Here, the market discourse's
promise of taking genetic genealogy into one's own hands clashes with implicit
assumptions of a domestic world that either on purpose or by chance did not reveal the
information now unveiled through a seemingly harmless genetic social networking
application. The risks, thus, are similar to the identity risks of traditional genetic
genealogy. But embedding genetic genealogy within a social networking framework
makes genetic geneaology more accessible: its use is more easily justifiable, and the
295
function of genetic social networking makes finding problematic connections like the
one mentioned easier.
4
Genetic social networking makes DTC genetics more accessible and more
desirable, both for the wide market of amateur genealogists (for whom the social
networking component adds a new element to their existing practices) and for younger
generations growing up with various social networking applications (for whom the
introduction of genetics into social networking adds a new element to their existing
practices). Genetic social networking is limited to ancestry tracking businesses,
however. Others, particularly on the health-related side of the market, increasingly are
seeking to make their offerings more attractive and accessible to larger audiences as
well. They do so not by adding new elements to existing practices, but by adopting
strategies from direct-to-consumer advertising (particularly from the area of prescription
medicine) to advertise their tests.
Direct Advertising
Thus far, advertising for DTC genetic services has been close to nonexistent.
Few applied genetics companies advertise their services directly: word of mouth,
referrals from physicians, online search engines, or news articles are more common
sources of information about DTC genetics companies and tests.
4.
Thus, the most prevalent risks that emerge from the complexity introduced by genetic social
networking are identity and privacy risks. Following the discussion in chapter IV, the domestic
and the technological worlds can serve as contexts for analyses of genetic social networking.
296
This has changed in recent months, however. On September 10, 2007, Myriad
Genetics (http://www.myriad.com), based in Salt Lake City, Utah, introduced an
advertising campaign for a genetic test that could test for mutations in the BRCA1 and
BRCA2 genes. Both mutations correlate with a high risk for breast cancer.
5
Their
BRACAnalysis test was not a DTC test in the strict sense, as it required a physician to
order the test on behalf of the patient. But the campaign was unique because it targeted
the individual patient rather than the physician. The campaign's aim was to raise
awareness about the BRCA genes and the correlation between known mutations in
either of the genes and breast cancer and to provide information about the availability of
diagnostic applied genetic technologies for use by lay individuals.
Reaction to Myriad's advertisement was overwhelmingly negative.
Commentators critiqued that it could raise fear and anxiety about mutations in the
BRCA genes and overstate the risks while at the same time ignoring potential insurance
ramifications.
6
The Wall Street Journal wondered whether these types of campaign
would overstate the importance of testing and "induce low-risk women to take drastic
measures" or create a false belief that if they did not have the mutation, women could
5.
Myriad Genetics, "Myriad Genetics Launches Awareness Advertising Campaign to Educate
Women About Hereditary Risks of Breast and Ovarian Cancer," 2007, http://www.myriad.com/
news/release/1049527 (accessed April 3, 2008, archived by WebCite at http:/
/www.webcitation.org/5WoFbjVW4).
6.
Arthur Caplan, "Women Should be Wary of Genetic Risk Ads: TV Commercials Exploit
Fear of Breast Cancer in the Guise of Education," MSNBC, September 14, 2007, http:/
/www.msnbc.msn.com/id/20761643/ (accessed April 3, 2008, archived by WebCite at http:/
/www.webcitation.org/5WoGakOIx).
297
forego routine exams.
7
The Genetics & Public Policy Center worried that the campaign
would put physicians in a position where they need to administer a test (and counsel
patients about the results) with which they themselves are unfamiliar.
8
Myriad's response to the controversy exemplifies the tensions between the
benefits and risks of applied genetics. Myriad argues that its campaign raises awareness
about a complex but important issue: the relation between well-known genetic
mutations and susceptibility to cancer. In addition, the availability of a test to scan for
these mutations would not only empower women to talk to their physicians and actively
seek knowledge about their genetic predisposition to cancer that can be critical to their
health but potentially even save lives. Critics grant these points but, as shown in the
preceding paragraph, caution about hidden risks. Without proper communication of the
complex mathematical probabilities that connect mutations in the BRCA genes to breast
cancer, patients could take extreme measures if a result was positive or forego further
screening if it was negative. The problem of overdeterminism and underdeterminism
remains to be addressed, and failure to do so could lead to serious physical risk.
9
The
7.
Marilyn Chase, "Ad-Campaign Fuels Debate on Breast-Cancer Gene Test," Wall Street
Journal, September 11, 2007, http://online.wsj.com/public/article/
SB118946587203223125.html (accessed April 3, 2008, archived by WebCite at http:/
/www.webcitation.org/5WoHJrSZA).
8.
Shawna Williams, "Myriad Genetics Launches BRCA Testing Ad Campaign in Northeast,"
Genetics & Public Policy Center, 2007, http://www.dnapolicy.org/
news.release.php?action=detail&pressrelease_id=85 (accessed April 3, 2008, archived by
WebCite at http://www.webcitation.org/5WoMZzZUK).
9.
See e.g., Williams-Jones and Graham, "Actor-Network Theory," 282.
298
problem is acerbated by the fact that while the BRACAnalysis test is not sold directly to
consumers, physicians who can order the test on their patients' behalf frequently are not
trained in genetic science or genetic counseling and can be of little help to translate and
make sense of the results. Besides changing the nature of patient-physician interaction,
the necessary involvement of physicians can have negative consequences for issues of
privacy: information about the patient' desire to take a test and the test results
themselves become part of that patient's medical profile, potentially exposing her to
higher insurance rates or denial of insurance coverage.
The controversy over Myriad's direct-to-consumer advertising campaign makes
clear that the solution to the risks of DTC genetics is not as simple as involving
physicians in the process. Heuristic challenges for the translation and communication of
complex information remain when physicians are not trained in genetics or genetic
counseling. And often, additional issues with privacy and insurance coverage can
acerbate instead of ameliorate the use of applied genetic technology. The controversy
over Myriad's campaign is indicative of a larger trend that points toward increased
marketing of applied genetic technologies directly to lay clients. In an as of yet limited
volume, this extends to offering genetic tests not only over the internet, but over the
counter. In 2007, RiteAid began offering a DNA paternity test to customers of its
299
nationwide stores. For $29 and a $119 laboratory testing fee, customers can purchase a
test from a company called Identigene to determine the paternity of their children.
10
Direct advertising of genetic tests seeks to introduce these tests to a wider range
of audiences than would otherwise know about them.
11
The fourth emerging application
thus far does not need direct advertising. The benefits of pharmacogenetics -- the
availability of custom-tailored drugs -- sells itself. Indeed, pharmacogenetics is one of
the most talked about and vaunted applications of genetic technology. And already in its
very early forms, it is available as a DTC genetics service.
Pharmacogenetics
Pharmacogenetic services look for mutations that affect drug metabolism. The
idea behind pharmacogenetics is to personalize drug prescription practices: knowing
how each individual reacts to a given drug would allow prescribers to fine-tune what
drug they prescribe, what dosage the drug should be administered in, and in what
combination drugs need to be prescribed to maximize expected positive effects and
minimize harmful side effects. Pharmacogenetics is still in its early stages. A select few
companies (among them Genelex at http://www.genelex.com and DNA Direct at http:/
10.
Nebra Rhone, "Who's the Daddy? Get a DNA Test at the Drugstore," Atlanta Journal-
Constitution, 2008, http://www.ajc.com/health/content/health/stories/2008/03/25/
paternity_0325_web.html (accessed March 25, 2008, archived by WebCite at http:/
/www.webcitation.org/5WapL9ReX).
11.
While not a biotechnology in its own right, as a practice that actively seeks to extend the
range of complex biotechnologies, a primary context for analysis of and intervention in direct
advertising could be the civic world.
300
/www.dnadirect.com) offer tests that read the genes associated with the most common
drug (most commonly the CYP2D6 genotype, and sometimes the CYP2C9 and
CYP2C19 genes). Tests determine how easily the individual test taker metabolizes a list
of drugs associated with these genes and which drugs would be inhibited by these
genes. Thus, results can reveal information about how strongly specific drugs would
affect the individual and which drug combinations would be ineffective.
The benefits of pharmacogenetics are significant. Poor metabolizers for drugs
linked to the CYP2D6 genotype, for example, could experience more severe side effects
than others taking the same drugs. Abnormally extensive metabolizers, on the other
hand, would need a higher dose to experience the effects of their drug. More
significantly, someone taking different drugs for different illnesses could find that one
inhibits the gene that metabolizes the other, effectively altering the effects of the other
drug and exposing the individual to potentially harmful consequences. While the range
of known drug interactions with specific genes remains limited, the list is growing.
Eventually, pharmacogenetics could allow for truly personalized medicine, where each
individuals' genetic profile can be matched to drugs in ways that maximize their
positive effects while minimizing harmful side effects.
Even in its nascent state, pharmacogenetics puts at stake many of the
disagreements between the potential the market sees and the risks other institutions
associate with DTC genetics. On April 4, 2008, Science released a paper that incited
strongly worded responses. The paper, entitled "A Case Study of Personalized
301
Medicine," was written by the Genetics & Public Policy Center (Kathy Hudson, a co-
author of the study, also was a participant in the 2006 Senate hearings). The case study
analyzed the usefulness of current pharmacogenetic testing for the use of anti-
depression drugs. The study concluded that while the genes analyzed play a role in how
individuals react to the drugs, the claims made by companies that offer these tests are
wildly inaccurate, that understanding the complexities of test results is difficult given
the over-the-internet sales model, and that more scientific consensus and clinical studies
supporting these tests were needed. Significantly, the study cautioned against the
possibility that individuals could adjust the dosage of their drugs in response to test
results without consulting their doctor or a genetic expert.
12
The study's
recommendation: strong oversight by both FDA and FTC.
13
The reaction from the market was swift and vehement. Both Genelex and DNA
Direct, two of the biggest players in DTC pharmacogenetic offerings, responded.
Genelex called out Science and the Genetics & Public Policy Center for fueling a
controversy with prejudice and deliberate misquoting of facts. DNA Direct published an
open letter, distancing itself from the specific type of test critiqued in the Science
article, while maintaining that the counseling and explanatory processes it offers always
12.
Companies that offer tests do explicitly caution against doing so: a self-test I did through
Genelex explicitly stated not to "not alter the dosage amount or schedule of any drug you are
taking without first consulting your doctor or pharmacist."
13.
Sara Katsanis, Gail Javitt, and Kathy L. Hudson, "Public Health: A Case Study of
Personalized Medicine," Science 320, no. 5872 (2008): 53-54.
302
involve genetic experts and healthcare providers. Clients, in other words, are not
exposed to more risk than if they had the test administered by their personal physician.
DTC offerings of pharmacogenetic testing, these providers argued, empowers clients
with the kind of knowledge that could make a significant difference to their health and
life and provides them with strict privacy and confidentiality protections, while overly
strict regulation would stifle innovation and keep critical information from becoming
available to large segments of the population.
14
Full-genome sequencing, genetic social networking, direct advertising of DTC
genetics, and pharmacogenetics are four of the most imminent challenges to the practice
of DTC genetics. Like DTC genetics itself, they are promising and can be beneficial to
the individual making use of them and to a family, group, or society as a whole. But at
the same time, they exacerbate the already existing risks of DTC genetics: amplifying
the complexity at the interface between a social system and its environment,
15
they
accentuate the importance of translating and communicating the complex science
underlying applied genetic technology, and they accentuate the importance of findings
norms for state-of-the-art communication able to integrate this new form of technology
14.
In some ways, pharmacogenetic testing is a microcosm of the larger issues examined in the
discourses of market and nonmarket actors. Because of its potential and because of the
explosive growth DTC pharmacogenetic testing likely will experience in the near future,
controversy over how to manage this new health practice quite directly will pit different
institutions against each other -- especially because the pharmaceutical industry already is
heavily regulated by legislation and colonized by the market. Such tension creates risks of
physical harm; thus, the market world provides a primary context for critical analysis of DTC
pharmacogenetics.
15.
Luhmann, Social Systems, 25-39.
303
into existing practices across a range of different institutions. Thus, inquiry into how
these new, more powerful genetic applications will affect and put at risk
biotechnological practice is becoming increasingly important.
Beyond DTC Genetics: Communicative Practice in Biotechnology
Newly emerging genetic biotechnologies like full-genome sequencing, genetic
social networking, direct advertising, and pharmacogenetics magnify complexity and
put additional stress on the modeled norms this study finds in the existing languages of
institutional actors. With new biotechnologies, the necessity to develop existing norms
of communicative practice toward state-of-the-art norms of communication for
biotechnology is gaining in significance.
These new biotechnologies call for inquiry into the rhetorical recovery of human
agency that extends beyond DTC genetics. Inquiry into state-of-the-art communication
in biotechnology, broadly defined, revolves around the grounding, legitimization, and
justification of choices made about how elements or objects of nature or, to follow
Luhmann, the environment are integrated into the existing practices of individuals
within and across a range of institutions.
16
This sets up the guiding question for this
study: how to constitute the norms and practices of state-of-the-art communication that
can safely and legitimately integrate a biotechnological practice into the lives of
individuals, families, and publics.
16.
See e.g., Latour, Politics of Nature; Luhmann, Social Systems.
304
The notion of agency is critical, the dissertation argues, not only for the narrow
purview of this study, but for a discussion of biotechnological practice in general. Thus,
the need for crafting stable grounds for choice and robust communicative practices that
mediate, translate, and reduce complexity in an effort to recover agency extends beyond
DTC genetics into, for example, the introduction of genetically modified organisms for
use in experimental crops, the use of cloned or genetically altered animals for
consumption, the discovery of new vaccines, the deployment of nanotechnology, and
the addition of chemicals to drinking water, to name only a few.
If agency is critical for relating the complexity introduced by an object of nature
to social practice, then unresolved stases between polysemous institutions involved in a
biotechnological practice over where the power to make choices rests is problematic.
Such stasis magnifies the complexity introduced by a new biotechnology; thus, it is this
moment of institutional stasis that calls for a recognition of language as critical to
biotechnological practice and for the search for norms of communication that can vest
agency in language. Assembling polysemous institutional languages into a broad
context that recognizes the stasis among them requires recognition of institutions and
institutional languages as rhetorical actors in an agonistic, communicative context that
circumscribes and constitutes biotechnological practice.
The recognition of institutions as rhetorical actors embraces the varied
contributions of a rhetorical tradition by extending the consideration of how elements of
nature are integrated into the social space through biotechnological practices. Rhetoric
305
traditionally has served as a techne for maintaining the polis -- whether Sophistic or
Aristotelian, the principles and practices of rhetoric have served to maintain and
strengthen a communitas. A consideration of how nature and the social intersect and
how the latter can manage or deal with the former has been largely outside the purview
of traditional rhetoric, with Machiavelli's fortuna as maybe the most notable (albeit
implicit) exception.
17
Yet at the same time, the integration of nature into the social
through biotechnological practices always has had and will have the potential to at once
bring benefits to and destabilize the communicative norms that maintain the polis: DTC
genetics exemplifies how relations between individuals and their families, healthcare
providers, employers, and others can be strengthened but also are put at risk when new
elements of nature are made part of the life choices of people. If indeed the practice of
rhetoric is at the core of the discovery of communitas, and if the agency and the
responsibility for making choices about the use of and participation in biotechnological
17.
Machiavelli may never have explicitly addressed nature per se, nor its integration into the
polis. But Machiavelli's times were as much influenced by a rediscovery of the ancients as they
were influenced by an impending discovery of nature as a critical site of human interaction:
Bacon and Ramus were just around the chronological corner, and the scientific method and later
the Age of Reason trace their origins to Machiavelli's time. If we see Machiavelli as a
transitional thinker between the ideas of the ancients and an incumbent age of modernity (see
e.g., Mansfield, Machiavelli's Virtue), it is hard to not see their ideas reflected, at least in part, in
his concept of fortuna, just as much as fortuna borrows from Aristotle's tuche. The radical
externality of fortuna, the force with which it impinged on the social and political lives of the
people, the inherent difference between it and the sphere of the social and political, and the
capricious immutability that characterized it give credence both to the allegorical, ancient
Goddess Machiavelli chose to represent this concept, and to the discovery of nature and science
that would soon follow. See also Stephen D. O'Leary, "Machiavelli and the Paradox of Political
Hypocrisy: The Fragmentation of Virtue in the Public and Private Spheres," in Spheres of
Argument: Proceedings of the Sixth SCA/AFA Conference on Argumentation, ed. Bruce E.
Gronbeck (Annandale, VA: Speech Communication Association, 1989), 117-27.
306
practices with contingent, uncertain outcomes increasingly has become vested in large-
scale institutions (instead of the individual persons that traditionally constituted a
rhetorical practice), then the recognition of institutions as rhetorical actors in contention
with each other is necessary for inquiry into biotechnological practice.
Historically, rhetoric as as practice has been predicated on recognizing the
stresses that multiple, particular, contingent contexts put on communication, grounding
norms that guide practice, and providing a context within which contending voices can
meet to address disagreement.
18
Rhetoric thus is inherently contextual: it is sensitive to
context, and here it thus allows for a dialogue between, or at least a recognition of, the
different grounds for action created by polysemous institutional languages that enable
and constrain biotechnological practice.
19
Thus, language itself, and the various ways in
which it can rhetorically situate agency, I argue, has significant implications for
biotechnological practice.
20
Situated rhetorical practices like synecdoche, metaphors, the
ethos of expertise, and others that characterize the languages of market and nonmarket
actors alike do not only have strategic uses but also have wide-reaching normative
18.
See e.g., Farrell, Norms of Rhetorical Culture.
19.
See e.g., Evans, Playing God?.
20.
And, I believe, opens inquiry into biotechnology to a range of theories and philosophies that
center on issues of linguistic agency, such as Wittgenstein's language games or Bakthin's
"judge." The former's concern with linguistic action as a priori to ontological knowledge of the
self (a notion that stands, quite evidently, in direct contrast to biologically determined
perceptions of genes), and the latter's conception of linguistic agency as always restricted by a
"third party" could provide worthwhile lenses through which to explore the role of language in
biotechnological practice.
307
implications on biotechnological practices that link new objects of nature to existing
social spaces. A rhetorical sensibility toward the languages that constitute a
biotechnological practice can assemble multiple, contending, and clashing institutional
languages to form new norms for how genetic biotechnology should be made part of the
existing social space. As Chapter I predicted, a rhetorical model for inquiry into
biotechnological practices "cannot produce predictive rules, but rather evolves heuristic
guidelines."
21
State-of-the-Art Communication in Biotechnology
This sensibility toward language as rhetorical extends to the question of how
norms of communication can be drawn from heuristic guidelines. Thus far, the
dissertation has argued that polysemous institutional languages put stresses on
conventions of communicative practice. This is not limited to DTC genetics, as new
applications either extend existing practices of DTC genetics or add new dimensions to
them and, in so doing, magnify complexity and add new material risks and social
uncertainties. Polysemous communication practices in industry, government, market,
and other institutions ground agency for choice separately and destabilize existing
norms and settled guides for how the public ought to deal with the presence of
biotechnologies. This instability makes difficult (but ever more pertinent) the move
from a state of complexity or perplexity, which opens new spaces for thinking about the
21.
Katz and Miller, "Low-Level Radioactive Waste Siting Controversy", 132.
308
self in relation to new biotechnologies, to a more reflective level where new norms can
be established.
The stakes exposed by contending, polysemous institutional languages in this
and other biotechnological practices are too high to ignore. A robust sense of
communication is key to biotechnological practice. The rhetorical patterns, tropes, and
structures that constitute the language through which the science of a biotechnological
practice is spoken in public audiences is relevant to merging relationships among
institutions. Language matters, not only because it facilitates the interface between
complex biotechnology and publics but also because it can shape the grounds from
which biotechnologies are integrated legitimately and safely into public practices. Not
recognizing the stresses put on how the communicative practices of different, contested
institutional languages frame complexity in relation to existing social practice carries
real, direct ramifications for those engaged in a biotechnological practice. Thus, the
difficult question for scholars of rhetoric is not only how to engage in inquiry into a
biotechnological practice like DTC genetics but also how to engage in resolving
unresolved stases between multiple, polysemous institutional languages of meaning-
making involved in biotechnological practices.
This undertaking requires structuring norms for state-of-the-art communication
that draw from a rhetorical understanding of language and can ground practice.
Following Farrell, guidelines for the integration of complex biotechnology into the
social space evolve from "norms [that] are made available to practice through the still
309
developing conditions and conventions of what I will call rhetorical culture."
22
The
dissertation argues that assembling the contending, polysemous conventions of
communicative practice in biotechnology to find communicative norms for guiding
practices that relate complexity to social practice should take place in what Farrell calls
a rhetorical forum. Extending Aristotle's Rhetoric into contemporary society, Farrell
argues that "a modern rhetorical forum [is] a space of engagement where in the modern
constraints of rhetorical culture might assert themselves."
23
A rhetorical forum
is any encounter setting which serves as a gathering place for discourse. As
such, it provides a space for multiple positions to encounter one another. And, in
its most developed condition, it may also provide precedents and modalities for
granting a hearing to positions, as well as sorting through their agendas and
constituencies. This is a way of saying that a rhetorical forum provides a
provisionally constrained context and an avenue of mediation among discourses
that might otherwise be self-confirming, incommensurable, or perhaps not even
heard at all.
24
Farrell's insight into modern rhetorical fora can and, I argue through this
dissertation, needs to and should be extended to nonhumans
25
and biotechnology more
generally. The conditions of a rhetorical forum respond perfectly to what the
dissertation has identified as critical steps toward crafting communicative norms for
biotechnological practice. A rhetorical forum is a context in which languages that
22.
Farrell, Norms of Rhetorical Culture, 7.
23.
Ibid., 277.
24.
Ibid., 282.
25.
Latour, Politics of Nature.
310
otherwise are insular and self-confirming can meet and find common ground. Farrell's
requirements for a rhetorical forum map onto the state in which the polysemous
languages of DTC genetics find themselves and also mirror Latour's discussion of
modalities for integrating complex scientific discoveries into the social space
26
and
granting a hearing to nonhuman constituencies.
27
As new scientific discoveries bring
with them perplexity
28
and add to complexity,
29
they disrupt established norms and bring
challenges to established guides that regulate how biotechnologies function in society.
These challenges open new possibilities but eventually must be resolved and stabilized
to establish new norms and guides for how an emerging biotechnology should become
embedded in society.
The dissertation argued earlier that the resolution of these challenges and the
settling of new norms requires a sensibility toward language as rhetorical. This sense of
rhetorical sensibility parallels Farrell's mention of "cognition" in relation to rhetoric:
"rhetoric [...] provides an important inventional capacity for the conventions, emotions,
and cognitions necessary for affiliation in a community of civil life."
30
Invention is
necessary because the uncertainties generated by new biotechnologies change
26.
Latour, Laboratory Life, 77-87.
27.
Latour, Politics of Nature.
28.
Ibid.
29.
Luhmann, Social Systems.
30.
Farrell, Norms of Rhetorical Culture, 76.
311
individual, familial, and public practices in ways that have not been dealt with before by
individuals, families, publics, and institutions: as a key canon of rhetoric, invention
"addresses unsettled matters"
31
and provides grounds for assembling competing
institutional perspectives and generating the norms and conventions necessary for the
legitimate integration of new biotechnologies into the public space. Thus, through the
"inventional capacity" of rhetorical practice, a rhetorical forum anticipates the
perplexity that accompanies the introduction of a new biotechnology into the social
space, assembles contending, polysemous institutional languages vying to address this
perplexity, and establishes communicative norms for relating the new "nonhuman"
actors to the existing practices that sustain a rhetorical culture.
The move from perplexity to a reflective consideration of how new
biotechnologies ought to be part of existing individual, familial, and political structures
hinges on a shared recognition of legitimate agency: of who ought to be given the power
to make choices, evaluate actions, translate results, and integrate findings. The
dissertation argues that for biotechnological practices, a rhetorical forum serves as a
context for vesting legitimate agency in language where polysemous languages struggle
over how and where to situate agency. This rhetorical forum benefits from a sense of
"rhetorical cognition made possible by a multitextured occasion"
32
-- precisely the kind
of multitextured occasion that presents itself to an emerging biotechnological practice
31.
Ibid., 77.
32.
Ibid., 293.
312
like DTC genetics. Extending rhetorical fora through a sensibility toward language as
rhetorical into the realm of biotechnologies thus can resolve tensions that magnify
complexity and, as such, can respond to unintended, unknown consequences that
necessarily emerge from the interface between the social and the environment.
The extension of Farrell's insights into rhetorical practice to the complexities
brought about by emerging biotechnology provides two key advantages. First,
rhetorical fora in biotechnology serve as a communicative, rhetorical counterpart to
Luhmann's sense of complexity: they provide a context that recognizes existing
conventions as evolving, assembles polysemous communicative practices brought about
by the changes that emerge from the integration of scientific discoveries into the social
space, and draws norms for practice that stabilize contested loci of agency and respond
to the continuous challenges posed by increasing (genetic) complexity. Second,
rhetorical cognition, while only briefly elaborated on by Farrell, provides a necessary
counterpart to the communication complexity that emerges from genetic complexity: it
advances "inventional possibilities" when contexts, or "common worlds," draw from
competing principles to ground agency and have to be reconciled or integrated. The
dissertation extends the "inventional possibilities" of rhetorical fora into biotechnology
as means of responding to complexity and generating state-of-the-art norms for
communication for biotechnology that escape being buried within the contestations of
competing institutional contexts and work to bring norms to a reflective level which
313
does not reduce options by drawing from singular institutional perspectives only but,
instead, increases possibilities for choice grounded in multiple institutional perspectives.
In this study, critical analysis of state-of-the-art communicative practices is a
national project limited to a specific biotechnological practice in the United States.
Analysis of norms for state-of-the-art communicative practice need not be limited to
DTC genetics, however. The need for analysis of how communication grounds norms
for practice extends beyond DTC genetics into biotechnology generally. Nor should
analysis of state-of-the-art communication be limited to a national scope. The reach of
biotechnology is increasingly global both in terms of its content, as evidenced for
example by genetic genealogy, and its communicative form (namely, its use of digital,
networked media). Future analysis of state-of-the-art communicative practices thus
should not remain restricted to a national project but needs to extend and adapt the
consideration of rhetorical fora for creating communicative norms for biotechnological
practice to other nations, cultures, social and political contexts, and languages.
314
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Asset Metadata

Creator Majdik, Zoltan P. (author)

Core Title The gene is out of the bottle: the communication of genetic complexity in direct-to-consumer genetics

School Annenberg School for Communication

Degree Doctor of Philosophy

Degree Program Communication

Publication Date 07/25/2010

Defense Date 06/13/2008

Publisher University of Southern California (original), University of Southern California. Libraries (digital)

Tag biotechnology,complexity,genetics,OAI-PMH Harvest,practice,rhetoric

Language English

Advisor Goodnight, G. Thomas (committee chair), Eliasoph, Nina S. (committee member), Lake, Randall A. (committee member), O'Leary, Stephen D. (committee member)

Creator Email majdik@usc.edu

Permanent Link (DOI) https://doi.org/10.25549/usctheses-m1416

Unique identifier UC1220362

Identifier etd-Majdik-20080725 (filename),usctheses-m40 (legacy collection record id),usctheses-c127-203466 (legacy record id),usctheses-m1416 (legacy record id)

Legacy Identifier etd-Majdik-20080725.pdf

Dmrecord 203466

Document Type Dissertation

Rights Majdik, Zoltan P.

Type texts

Source University of Southern California (contributing entity), University of Southern California Dissertations and Theses (collection)

Repository Name Libraries, University of Southern California

Repository Location Los Angeles, California

Repository Email cisadmin@lib.usc.edu