Experiments in Democracy: the Science, Politics and Ethics of Human Embryo Research in the United States, 1978-2007
A dissertation presented by
James Benjamin Hurlbut to
The Department of the History of Science in partial fulfillment of the requirements
for the degree of Doctor of Philosophy
in the subject of the History of Science
Harvard University Cambridge, Massachusetts
© 2010 – James Benjamin Hurlbut All rights reserved.
Advisor: Sheila Jasanoff Author: James Benjamin Hurlbut
Experiments in Democracy: the Science, Politics and Ethics of Human Embryo Research in the United States, 1978-2007
Abstract
This dissertation examines the scientific, ethical and political deliberations surrounding human embryo research in the United States from 1978 to 2007. During this thirty-year period, debates about the biological and moral status of the human embryo led to vigorous arguments about technology and the public good, about the forms of
deliberation appropriate to public policy making, and about the tacit social contract between science and the state. The dissertation examines how a series of public bioethics bodies responded to scientific and technological developments from in vitro fertilization to human embryonic stem cell research. Each had to contend with the technical
uncertainties of embryo research and with America’s moral pluralism; and each proposed a mode of public reasoning to resolve the tensions.
I argue that each of these bodies accepted the notion that scientific knowledge stands outside of politics, but that they conceptualized the role of scientific authority differently because they varied in their conceptions of democracy. Debates over the definition of scientific terms like “preembryo” and “therapeutic cloning” were conducted simultaneously with arguments about whether the public was “confused” and whether such confusion should be corrected by experts or through democratic politics. I examine how these issues spilled over from ethics bodies into politics as states like California and Missouri became laboratories for new approaches to public support of biomedical
Advisor: Sheila Jasanoff Author: James Benjamin Hurlbut
By tracing the successive controversies that laid bare competing visions of democratic deliberation—from scientific technocracy to procedural pluralism, and from Rawlsian public reason to anti-Rawlsian communitarianism—the dissertation paints a dynamic picture of the co-production of science and politics. A central contention of the dissertation is that the ways in which science figured in politics—as a source of
knowledge, as a wellspring of life-improving goods, and as a locus of rational and ostensibly extra-political authority—depended on the ideas of democracy that were advanced in parallel. Thus, the dissertation is at once a history of the human embryo as an object of laboratory research, of public and private institutions of biomedical research in America, and of the changing political role of public bioethics.
Table of Contents
List of Abbreviations vii
Acknowledgements viii
Chapter 1: A History of Experiment 1
Chapter 2: New Beginnings 30
Chapter 3: Public Facts and Private Values 84
Chapter 4: New Kinds, New Questions 145
Chapter 5: Confusing Deliberation 211
Chapter 6: In the Laboratory of Democracy 257
Chapter 7: Science for the People 296
Chapter 8: Experiments in Democracy 340
Annex 1 361
List of Abbreviations
AAAS American Association for the Advancement of Science ACT Advanced Cell Technologies
AFS American Fertility Society
AFSEC American Fertility Society Ethics Committee BIO Biotechnology Industry Organization
CCC California Catholic Conference
CCST California Council on Science and Technology CGS Center for Genetics and Society
CIRM California Institute for Regenerative Medicine CNA California Nurses Association
DDT Deliberative Democratic Theory
DHEW Department of Health, Education, and Welfare
DPTFR Doctors, Patients and Taxpayers for Fiscal Responsibility ESC Embryonic Stem Cell
FRC Family Research Council HERP Human Embryo Research Panel hESC Human Embryonic Stem Cell
HFEA Human Fertilization and Embryology Act (Authority) HGAC Human Genetics Advisory Commission
HHS US Department of Health and Human Services ICM Inner Cell Mass
ICOC Independent Citizens Oversight Committee IP Intellectual Property
iPSC Induced Pluripotent Cell
ISSCR International Society for Stem Cell Research IVF In Vitro Fertilization
NBAC National Bioethics Advisory Commission NIH National Institutes of Health
NRLC National Right to Life Committee
NT Nuclear Transfer
OHSR Office for Human Subject Regulation OTA Office of Technology Assessment PCB President’s Council on Bioethics
PCBBR President’s Commission on Biomedical and Behavioral Research SCNT Somatic Cell Nuclear Transfer
USCCB United States Conference of Catholic Bishops VLA Voluntary Licensing Authority
Acknowledgements
There are many people to thank. My family, friends, and fellow scholars each nourished me in particular ways during my years as a graduate student. My fellow graduate students in the history of science provided friendship, solidarity, and intellectual community. A few specific conversations had a durable impact on the development of my thinking, in particular conversations with Grischa Metlay, Alex Wellerstein, and Nasser Zakariya. Chitra Ramalingam and Amber Musser have been wonderful friends; they can always be counted on to laugh at my cynical jokes and to reciprocate in kind.
Among the History of Science faculty, Everett Mendelsohn and Charles Rosenberg served on my committee and provided helpful feedback on this project. Everett advised me through my first few years of graduate work, and readily advocated for me at several critical moments. Anne Harrington adopted me as an unofficial advisee early in my graduate work and provided advice and encouragement at key moments along the way. A reading course with Steve Shapin on science and industry introduced me to new domains and had an important influence on the dissertation.
Many of the nascent ideas that ultimately found expression in this dissertation were born out of conversations with Jeff Skopek. Jeff was and remains among my closest friends and most valued interlocutors. He is always up for an argument, and can be counted on to take that dissenting position that forces one to sharpen one’s thinking. Akiba Lerner and Josh Landy have also been invaluable interlocutors and friends. Our wonderful conversations, squeezed in around marathon sessions of B movies, have introduced me to novel intellectual domains and pushed me to think about my own
scholarly preoccupations differently. Josh and Akiba are intellectuals in the truest sense. They remind me that in this sort of work, the pleasure of dialectic is its own reward, and that, combined with friendship, there is little in life that is better.
A year of my graduate work was supported by the Edmond J. Safra Center for Ethics at Harvard. I am grateful to the Safra Center not merely for the freedom to think and write, but for creating a lively and enriching intellectual environment. I am
especially grateful to Arthur Applbaum and the 2007-2008 Safra Center fellows for providing me with a year of robust dialectic and collegiality.
I am also indebted to the many fellows of the STS Program at Harvard who have given critical feedback on my work; they have been an extraordinarily nourishing group. In a University where time is short, and opportunities for intellectual community are remarkably rare, the STS fellows group is an exception to the rule. I am particularly indebted to Kris Saha who in the last several years has some to be not only a valued interlocutor, but a good friend.
I am indebted to the many actors in my story who generously gave their time to talk to me. A scheduled one-hour interview with Paul Berg lasted three and a half; Charles McCarthy gave me three hours of conversation, critical comments and enthusiastic encouragement; and the list goes on. Exceptional even among this group was Richard Doerflinger. Rich was extraordinarily generous with his time, taking almost an entire day to talk with me. He also gave me access to the extraordinary wealth of materials in the US Conference of Catholic Bishops archive.
My family deserves tremendous thanks. My father, William Hurlbut, is more responsible for my scholarly trajectory than anyone. It was through him that I gained my
first exposure to the some of the issues addressed in this dissertation, in part by tagging along to his seminars at Stanford beginning when I was thirteen. Many conversations with my dad have flowed from my research; I count these among the greatest rewards of my work.
Molly, my wife and the love of my life, made this project possible in more ways that she recognizes. Her love and support sustained me through moments of self-doubt and exhaustion. Her sense of humor inoculated me against the angst of the struggling graduate student, while her tireless dedication to the service of others kept me from indulging in excessive omphaloskepsis. I could not ask for a more loving wife. Your the best, Molly.
My daughters, Tamsin and Hazel, made my years as a graduate student
immeasurably richer. They both came into being as the dissertation took shape. Much of the research and writing of this dissertation was done with a little person hanging from my leg or sleeping sweetly in the bouncy seat at the foot of my chair. My writing was interrupted countless times by the friendly sound of Tamsin knocking at my study door. I treasured the many brief moments we spent warming our hands by the woodstove, having milk on the step, or eating nuts together. As the dissertation grew from notes to text, Hazel grew from a tiny newborn to a beautiful little girl. She and I spent many early mornings together in my study during her first months, and though not yet able to seek me out as her big sister does, her smiles, hugs and shrieks of glee always greet me when I venture away from my work. Tamsin and Hazel remind me that the life of the mind is nothing but for the joys and tribulations of embodiment.
Finally, and most importantly, my sincerest thanks go to Sheila Jasanoff. To say that Sheila is an extraordinary mentor is an understatement. Sheila invested dozens of hours in this dissertation, carefully reading and re-reading drafts, discussing them with me at length, and challenging me to be more coherent, more concise, and more
convincing. Sheila has been by far the most formative intellectual presence in my graduate education. She is a true professor: she believes in the virtue of scholarship and has placed herself profoundly in its service. She is exceedingly dedicated to her students and to the scholarly virtues she nurtures in them; from this dedication I have benefited tremendously. It has truly been a privilege to be Sheila’s student.
Chapter 1: A History of Experiment Introduction
Between 1978 and 2008, biomedicine produced and put into wide circulation a novel laboratory entity, the in vitro human embryo. During this thirty-year period, the in vitro embryo became an object of increasingly invasive laboratory manipulations, a resource for generating biological by-products, and ultimately a loose cluster of
heterogeneous biological entities. The embryo changed as both material and discursive object, from an initial phase when it was seen as a natural extension of its more familiar counterpart, the embryo in the womb, to an end in itself, an object whose status— biological and moral—related to profound debates in society about what human life is and when it becomes worthy of protection. The first objective of this dissertation is to trace the history of those intertwined debates about the nature of the embryo and the moral arguments surrounding it.
The dissertation, however, makes a more complex argument. It shows how the attempt to locate the developing embryo in a moral discourse called forth a decades-long experimentation with the forms of deliberation and the kinds of arguments that could adequately deal with U.S. society's relationship to its novel embryonic members and to its own moral pluralism. During this period, the embryo stimulated a line of experiments in public moral reasoning. Sometimes conducted in the controlled conditions of advisory committees, such experiments rendered manageable the unruly complexity of biological and democratic bodies; at other times, the experiments were conducted in the unruly body politic itself. The dissertation traces the successive experiments that laid bare competing strands in American philosophies of public reasoning, including scientific technocracy,
procedural pluralism, Rawlsian public reason, and anti-Rawlsian communitarianism. In sum, I show throughout this dissertation that questions of how to treat the embryo transmuted into questions over who has the authority to describe facts and make moral judgments and—most unexpectedly—into questions of the right language in which to reason together about the embryo's status. The dissertation thus presents a history of American political theory as well as of American biomedicine at a time of exceptional flux in our understanding of what it means to be human.
The Embryo as a Laboratory Research Object
The history of the human embryo as a laboratory object begins with the birth of the first child conceived in vitro in 1978. In the immediate aftermath, the IVF embryo was seen primarily as a technologically displaced element of human procreation. Its presence in the laboratory was of short duration, the brief period between retrieval of ova and the transfer of cleaving zygotes to the recipient womb. During the 1980s, IVF-assisted reproduction became an increasingly common practice in the United States, with the total number of in vitro human conceptions rising from dozens in the early 1980s to hundreds of thousands by 1990. During this period, advances in genetics and cell biology opened new research domains. The human embryo, by then a readily available
by-product of clinical IVF, attracted renewed interest as a research object; its imagined uses were increasingly distant from human reproduction. Researchers saw tremendous potential for the use of the IVF embryo in studies of cancer genetics, human
embryogenesis and tissue culture, and in the study of an elite (and elusive) category of self-renewing cells called stem cells.
The embryonic stem cell, derived in the late 1990s from the embryo itself, was for some years before a biological concept largely unfamiliar to those outside the research communities of cell biologists, immunologists and geneticists. Within five years, this would change dramatically. By 2001, the human embryonic stem cell was at the center not only of a rapidly emerging scientific field, but of American politics. The
technologies of somatic cell nuclear transfer (cloning) and human embryonic stem cell research catapulted this nascent area of research to the top of the agenda of American biomedical science, edging out genomics as the soon-to-be revolutionary life science of the twenty-first century and becoming a primary site for imagining an endless frontier of medical and economic benefits.
Lorraine Daston and others have proposed that the well-worn lines of division between realism and constructivism can be challenged in productive ways by undertaking “biographies of scientific objects.”1 This dissertation adopts that methodological
approach in part, following the in vitro embryo as a material research object that circulated in a variety of biomedical contexts. In following the object rather than the biomedical domains in which it was generated, I will argue that the intrinsic potencies of the embryo gathered together a heterogeneous and unruly set of practices, uses and scientific projects. From laboratory-assisted reproduction to stem cell culture, a myriad of potencies were discovered within the machinery of embryo. Revealing these different potencies required different arrangements of instruments, intent, and expertise within the laboratory, but also different arrangements of clinical practice, democratic politics, law, and market dynamics. Biomedicine’s increasing epistemic and technical grasp on the embryo and its incremental revelation of previously unimagined potencies made it an
intriguing, if elusive research object. Yet the embryo’s position within the structures of biomedicine, law, and democratic politics was tentative at each step. It was repeatedly destabilized by shifting meanings—scientific, moral and political, thus transforming moral deliberation, democratic politics, and laboratory science in the same moment.
The legislature and the public square were as productive as the laboratory bench for bringing this scientific object into being, both in producing its new material
configurations and in functioning as critical sites of ontological sense-making. The embryo taken as a material-scientific object is therefore simultaneously also a moral and political object. The movements of the embryo as materiality and as research object were inextricably linked with the rhetorical constructions of the embryo that circulated in public discourse and moral deliberation. The human embryo was an experimental site for producing representations not only of biological nature, but also of the body politic, of the fact/value boundary, and of the public sphere. Drawn into these various
arrangements, the embryo was made to generate objects as solid and apparently
unambiguous as law, capital, and children. To paraphrase François Jacob’s well-known description of the apparatus of experiment, the embryo was by its very nature a machine for making a human future; in this biography of the embryo as a scientific object I will trace not only the multiple layers of experimental production but also the democratic laboratories in which the embryo’s future was imagined and elicited.
Therefore, this study will neither merely concentrate on the minutiae of the laboratory; nor will it simply follow the political controversies that attached to black-boxed laboratory products. Indeed, some of the former and much of the latter has already
been done.2 Rather, among the primary contentions of this dissertation is that the practices, materialities, and epistemic accounts that emerged from the laboratory cannot be understood without making simultaneous reference to the agonistic arena of
democratic politics; nor can the normative accounts of pluralism, public reason and democratic representation that emerged out of politics be understood without tracing their genealogies to the epistemic site of the laboratory. In this story, biological materialities were generated to circumvent legal constructions of nature; normative accounts of democratic legitimacy were embedded in technical scientific language; and political theories of public reason were built on detailed technical knowledge of the human embryo. Tentative and highly technical developments in the laboratory were capable of dramatically altering political deliberation. Thus this biography of a scientific object is a co-productionist narrative.3 It is simultaneously a biography of democratic institutions, moral epistemologies and deliberation in the public square.4
Science, Democracy and the Social Contract
The second thread of the dissertation follows the embryo through a set of changes in the public funding of biomedical science, changes for which the embryo and its
derivatives would become the focal point from the late 1990s forward. Between 1975
2 Hannah Landecker, Culturing Life: How Cells Became Technologies, annotated edition. (Harvard University Press, 2007); Daniel Perry, “Patients' Voices: The Powerful Sound in the Stem Cell Debate.,”
Science 287, no. 5457 (February 25, 2000): 1423; Catherine Waldby and Robert Mitchell, Tissue
Economies: Blood, Organs, and Cell Lines in Late Capitalism (Duke University Press, 2006); C. Waldby, “Stem cells, tissue cultures and the production of biovalue,” Health 6, no. 3 (2002): 305; Sarah Franklin, “What we know and what we don't about cloning and society.,” New Genetics & Society 18, no. 1 (April 1999): 111; S. Franklin, “Culturing Biology: Cell Lines for the Second Millennium,” Health 5, no. 3 (2001): 335; Sarah Franklin, “Stem Cells R Us: Emergent Life Forms and the Global Biological,” in , ed. Aihwa Ong and Stephen J. Collier (Wiley-Blackwell, 2005).
3 S. Jasanoff, States of Knowledge: the Co-production of Science and Social Order (Routledge, 2004). 4 In this respect, the project is conceptually most indebted to Sheila Jasanoff, Designs on Nature: Science
and 2009, not a single federal dollar was spent on research involving the in vitro human embryo. The IVF embryo became a presence in American laboratories during a period when Congress had begun to take an active interest in the ethical limits of biomedical research. Before this time, though Congress had taken an active role in setting research priorities, legislative intervention in research practices was far from the norm.
In the 1970s, the tacit U.S. social contract with science was undergoing
modification in light of growing awareness of abuses in human subjects research. The autonomy of science was an established element of the post-war social contract. In 1945 Vannevar Bush had envisioned an instrumental reciprocity between science and the state in which the former, in return for support and non-interference, would respond to public agendas with a constant stream of new knowledge and technology.5 In Bush’s vision, science was a value-neutral operation, outside the reach of fickle politics, and hence in its very nature a public good. Though the National Science Foundation owed its form more to John R. Steelman, Bush’s linear model and vision of extra-political science became part of the mythology of post-war American public science.6 Congressional discussions in the 1970s over research ethics and recombinant DNA were attempts to balance the presumed autonomy of science against the responsibility of the state to protect its citizens from risk.7 The state tended to be characterized as an outsider, meddling in the internal moral equilibrium of science. At the same time, the state was constructed as the sole
5 Vannevar Bush and United States., Science, the Endless Frontier: a Report to the President on a Program
for Postwar Scientific Research, (Washington: U. S. Govt. Print. Office, 1945).
6 Daniel S Greenberg, Science, Money, and Politics: Political Triumph and Ethical Erosion (Chicago: University of Chicago Press, 2001), 50-55; for a related discussion of the meaning of this model for democratic institutions see Philip Kitcher, Science, Truth, and Democracy, (Oxford University Press, USA, 2001).
7 Susan Wright, Molecular Politics: Developing American and British Regulatory Policy for Genetic
authority over the public good and hence implicitly as the source of moral (as well as economic) discernment on behalf of its citizens.8
Congressional discussions of research ethics in the 1970s created a new justification for political intervention in science. Beginning with the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research in 1975, a series of public ethics bodies were formed to assess the limits of biomedical research and recommend regulatory and legislative paths. Though in some cases regulatory action was taken in light of the recommendations of such bodies, their primary effect was not so much on codified law as in the articulation of principles about how public goods (and limits) should be defined by the democratic polity. They
produced a new set of norms for biomedical science that mediated between citizens’ claims on science and the obligations of biomedical research to defer to extra-scientific normative judgments.9 These bodies were in effect boundary organizations, mediating the point where democratic authority stops and autonomous inquiry starts.10 In the thirty years following the birth of Louise Brown, the embryo became a primary locus for revisiting the contract between science and the state, both around the limits to scientific
8 In this sense the dissonance between state authority and scientific autonomy is a unique instance of the public/private boundary. Science in this story was frequently characterized a quintessentially public enterprise, while at the same time being cordoned off from political intervention. At the same time, legislating for public morality is a reserve power of the state, from varieties of private behavior (e.g. public drunkenness, prostitution) to matters of public safety and welfare. One thread of the dissertation examines how the public-private boundary was negotiated around the sometimes conflicting authorities of science and the state.
9 David J. Rothman, Strangers at the bedside, 2003; John H. Evans, Playing God?: Human Genetic
Engineering and the Rationalization of Public Bioethical Debate (University Of Chicago Press, 2002); M. L. Tina Stevens, Bioethics in America: Origins and Cultural Politics (Baltimore: Johns Hopkins University Press, 2000).
10 David H. Guston, “Stabilizing the Boundary between US Politics and Science: the Role of the Office of Technology Transfer as a Boundary Organization,” Social Studies of Science 29, no. 1 (February 1, 1999): 87-111.
self-determination and around the obligations of the state to its citizens to support biomedical research. Much of that debate played out in public ethics bodies.
In the absence of federal funding, human embryo research took a radically different course than other related areas in biomedicine. During the 1980s, American research on the in vitro human embryo was conducted piecemeal in clinical settings. It was funded largely by infertile couples desperate to have a child and prepared to gamble substantial sums of money on the procedure, despite one-in-ten odds of success.11 As interest grew in non-reproductive uses of the human embryo in the 1990s, the clinical IVF industry became an essential infrastructural resource, one separate from (and largely unregulated by) the federal government, but a source for embryos without which publicly funded research would face insurmountable practical and ethical hurdles. Between 2001 and 2006, the human embryonic stem cell helped to prompt an unprecedented public reexamination of the place of science in American democracy. The human embryo would become a locus of highly public political debate, a basis for reframing the obligations of the state to its citizens, and an occasion for individual states to enter the business of large-scale science funding.
The developments of the early 2000s were in part predicated on industrial changes in basic biomedical research. In the last two decades of the twentieth century the
emergence of the biotechnology industry altered the shape of American biomedical research. In the late 1970s, molecular biological research, especially around recombinant DNA, gave rise to a set of industrial ventures that would prove highly profitable.These
11 Charles Hall and United States., Infertility: Medical and Social Choices. (Springfield Va.: Congress of the U.S. Office of Technology Assessment;National Technical Information Service, U.S. Dept. of Commerce distributor, 1988).
successes catalyzed a biotechnology industry that burgeoned into a major industrial sector by the end of the century.12
The promise of the biotechnology industry in generating life-enhancing
technologies and economic growth was frequently invoked after the late 1990s. At the same time, the embryo was increasingly seen as a rich natural material for
biotechnological innovation. Recombinant DNA was cited as an example of how minimal intervention by the state in scientific research had resulted in tremendous scientific, technological, and economic benefits, despite early public concerns. Embryo research, particularly human embryonic stem cell research, was often characterized as the next biotech revolution, one that could take advantage of the established infrastructure of the biotech industry, thus rapidly generating technological innovation and therapeutic goods. Proponents of the research, including prominent academic scientists, promised dramatic medical breakthroughs, so long as the intellectual and market capital of modern biomedicine was allowed to do its work unrestrained.
With the 2001 Bush administration restrictions on federal funding of ESC research, state-level funding efforts began to emerge. Most notable was a California ballot initiative in 2004 that dedicated three billion dollars over ten years to hESC
research in the state. The initiative, colloquially known as Proposition 71, was the largest non-federal public science-funding project in the history of the United States. While the federal funding apparatus had evolved piecemeal over more than a century, California’s
12 Sally Smith Hughes, “Making Dollars out of DNA: The First Major Patent in Biotechnology and the Commercialization of Molecular Biology, 1974-1980,” Isis 92, no. 3 (September 2001): 541-575; Arthur Kornberg, The Golden Helix: Inside Biotech Ventures, 1st ed. (University Science Books, 2002); Paul Rabinow, Making PCR: A Story of Biotechnology (University Of Chicago Press, 1997); Paul Rabinow and Talia Dan-Cohen, A Machine to Make a Future: Biotech Chronicles (Princeton University Press, 2006); Barry Werth, The Billion Dollar Molecule: One Company's Quest for the Perfect Drug (Simon & Schuster, 1995); Sheldon Krimsky, Biotechnics and Society: The Rise of Industrial Genetics (Praeger Paperback, 1991).
developed de novo, almost overnight.13 The politics surrounding the initiative led to a critical reassessment of the logic of the federal system, from grant review to intellectual property ownership to relationships between institutions of public science and institutions of democratic governance. At the center of these developments was the embryonic stem cell. It was imagined as a rich natural resource, pregnant with technological (and
economic) possibilities. But it was also the basis for rearticulating the notion of citizenship; its generic potential to treat myriad diseases was used to justify its benefits for all citizens. As I will show, the resulting imaginary of the body politic as composed of vulnerable citizens was central to reevaluations of intellectual property and technology transfer, of the complementarity (or conflict) between the public good and the interests of scientists within the academic-industrial innovation complex.14 The developments in California belie some recent critiques of the increasing place of private capital in the organization of contemporary academic research.15 Rather the imagined potency of the embryonic stem cell became the basis for renegotiating the social contract with science around a new public imaginary of rapid therapeutic innovation.
Around 2000, some prominent scientists began to demand a role in facilitating democratic process, thereby calling attention to aspects of the social contract beyond the innovation-centered symbiosis between science and the state. These scientists argued
13 Greenberg, Science, Money, and Politics; Michael. A Dennis, “Reconstructing Sociotechnical Order, Vannevar Bush and US Science Policy,” in, ed. Sheila Jasanoff States of Knowledge: the Co-production of Science and Social Order (Routledge, 2004).
14 Adriana Petryna, Life Exposed: Biological Citizens after Chernobyl, 1st ed. (Princeton University Press, 2002); Jenny Reardon, Race to the finish (Princeton University Press, 2005); Jenny Reardon, “Democratic Mis-Haps: The Problem of Democratization in a Time of Biopolitics,” BioSocieties 2, no. 02 (2007): 239-256; Kaushik Sunder Rajan, Biocapital: The Constitution of Postgenomic Life (Duke University Press, 2006); Paul Rabinow, Essays on the Anthropology of Reason, Princeton studies in culture/power/history (Princeton, N.J: Princeton University Press, 1996), 91-112.
15 Derek Curtis Bok, Universities in the marketplace (Princeton University Press, 2003); Daniel S. Greenberg, Science for Sale: The Perils, Rewards, and Delusions of Campus Capitalism, 1st ed. (University Of Chicago Press, 2007); Sheldon Krimsky, Science in the Private Interest: Has the Lure of Profits Corrupted Biomedical Research? (Rowman & Littlefield Publishers, Inc., 2004).
that the procedures used to resolve normative conflicts over technically complex issues could not function properly without expert intervention in public discourse. Their interventions sought not so much to protect the integrity of science but to preserve the integrity of democratic deliberation. The scientists involved argued that only
disinterested experts could distinguish between the non-prejudicial and scientifically accurate language of fact and confused speech that mixed facts and values. Reasoned deliberation, and thus democratically legitimate outcomes, required scientists to set the linguistic baseline for political deliberation, so as to separate facts from values.
Moral Deliberation, American Pluralism and the Construction of Public Reason
The third thread of the dissertation examines a series of ethics bodies that addressed human embryo research ethics from 1978 forward. Between 1978 and 2005, four public bodies undertook extensive deliberation on research involving human embryos, the Ethics Advisory Body (EAB) in 1978, the Human Embryo Research Panel (HERP) in 1994, the National Bioethics Advisory Commission (NBAC) in 1997-1999 and the President’s Council on Bioethics (PCB) in 2002-2009. In addition, I examine the work of the Ethics Committee of the American Fertility Society (AFSEC), which issued its first report in 1986.
The 1970s saw significant changes in the role of ethics in federally funded biomedical research. In the 1960s and 1970s, abuses of human subjects in biomedical research increasingly preoccupied the biomedical research establishment, and ultimately the U.S. Congress, leading to the establishment of the National Commission for the Protection of Human Subjects of Biomedical and Behavioral Research in 1975. In 1978,
the Ethics Advisory Board was established as a standing committee for ethical review of certain categories of research, including research on the in vitro human embryo. In 1978, the federal government responded to the birth of Louise Brown by calling upon the EAB to provide an ethical assessment of the research area. Delegating deliberative
responsibility to a public ethics body, particularly in light of emerging scientific developments, became a standard practice of the federal government after 1978.
Though the problems faced by each of these committees were on their face remarkably similar, they arrived at their conclusions by very different means. Each (a) described the public on whose behalf it was making decisions; (b) attempted to represent it legitimately; (c) reasoned on its behalf; and (d) arrived at conclusions that were
ostensibly respectful of pluralistic difference. Nevertheless, they all (a) conceived of the public radically differently; (b) produced radically different representations of the public (and, as a result, the private); (c) reasoned in extraordinarily different ways; and (d) came to very different conclusions about the right issues to address and the right way to go about addressing them. I argue that the differences among these bodies cannot be accounted for in terms of political theory or moral epistemology. Rather, embedded in the tacit theories of democracy that underpinned the work of these bodies were theories of how the state and its citizens relate to knowledge: to what is known, who knows it, and how it should be known (including the language in which it should be described and deliberated).
The dissertation will examine how deliberative authority was constructed by each ethics body, what counted as a better claim or reason, and what external warrants were invoked to justify such reasons. Epistemic considerations played a critical role in the
theories of representation, deliberation and public reason advanced by each of these bodies; however, the role of epistemic factors differed significantly in each case, not primarily because of differences in how knowledge was approached, but because of differences in how American democracy was imagined. I will show though a chronological series of vignettes how, at these moment of deliberation, there is (a) a progression in the nature of the scientific object being discussed; (b) a progression in the way people imagine the body politic in relation to the ethics body; (c) a shift in theories of deliberation; and (d) embedded in these different theories, shifting ways of drawing the nature-culture boundary for purposes of public decision-making.
Throughout the dissertation, I treat public ethics bodies as experiments in democracy. In conceiving of these bodies as deliberative experiments, I am making conscious reference to recent projects in deliberative democratic theory that hybridize normative political philosophy with political science by undertaking controlled deliberative experiments to resolve values-disagreements.16 The public ethics bodies, though somewhat different in form from deliberative experiments imagined by scholars, are a productive site for uncovering the subtle, often unrecognized ingredients that inform ideas of democratic deliberation in contemporary American political theory. They are, in other words, “natural experiments.” Since science and technology are at the center of late modern democratic politics, and are increasingly an element in deliberative experiments, the historical analysis presented in this dissertation necessarily speaks to contemporary
16 Dennis F. Thompson, “Deliberative democratic theory and empirical political science” (2008); Professor James S. Fishkin, Democracy and Deliberation: New Directions for Democratic Reform (Yale University Press, 1993); Archon Fung, Deepening Democracy: Institutional Innovations in Empowered Participatory Governance (Real Utopias Project) (Verso, 2003); Archon Fung, “Democratic Theory and Political Science: A Pragmatic Method of Constructive Engagement,” American Political Science Review 101, no. 03 (2007): 443-458.
preoccupations in normative political theory. I argue that the results of these experiments reveal much about the long(er) duration of ideas of public reason in relation to technically complex domains. In this sense, too, public ethics bodies emerge as sites of
co-production of American politics and American biomedicine.
Each of these bodies encountered significant resistance. None succeeded in directly shaping policy, let alone generating national consensus. Each body’s notions of democratic representation and reasoned consensus were highly contested, as was the political representativeness of the body itself. The ambiguous results of these embryonic experiments prompted some to seek other apparatuses to achieve democratic resolution. The self-conscious moral deliberation of the ethics bodies gave way in several states to the messy politics of the public square on the notion that the public is ultimately the proper custodian of its own value-debates. Yet even when resolution was sought through the vote—the most basic mechanism of procedural democracy—the process of
determining democratic preferences followed the process of scientific fact-finding. As the public claimed authority to speak for itself, some actors, most notably scientists, questioned what language the public should speak in.
Thus the embryo research debates were at one and the same time debates over how to characterize the human embryo in its progression from womb to industrial
laboratory and over how to achieve democratically legitimate deliberation in a technically complex domain. At different moments, actors imagined public reason and democratic pluralism differently, with scientific knowledge playing a crucial but subtle role. Notions of what counts as scientific knowledge and how epistemic questions should be addressed in moral deliberation had a direct and profound impact on how theories of public reason
were constructed. Though knowledge claims were socially contested and normatively inflected in the embryo research debates, it would be misleading to say that knowledge was one among several distinct loci of political controversy. Rather, disagreements about how to do democracy well played out through disagreements about what is known, who knows it, and how it should be known.
Topically Related Scholarship
There has been relatively little historical scholarship on the human embryo research debates in America, with a few notable exceptions. Jane Maienschein’s Whose View of Life does cover some of the same territory as this dissertation, but her analysis tends to treat as given the elements that I historicize.17 Maienschein argues that the fundamental ethical and political problem associated with human embryo research ethics is to define when life begins. She looks back into the eighteenth century to trace
competing notions of the ontogeny of the organism and demonstrates how these concepts persist in late twentieth century notions of life’s beginnings. Her historical work is a compelling effort to draw robust historical scholarship into the ethically fraught discussions of the early twenty-first century. It is informed by the notion that policy questions over embryo research are best resolved through scientifically informed deliberation that takes into account the historical precedents for competing
representations of life. As she moves into the developments of the twentieth century, Maienschein shifts away from historical analysis into a commentary on the ethical and policy questions surrounding the embryo. Accordingly, she discusses the post-1980
17 Jane Maienschein, Whose View of Life?: Embryos, Cloning, and Stem Cells, New Ed. (Harvard University Press, 2005).
period less in the idiom of an historian than of an ethicist and philosopher of biology. By contrast, I am interested in understanding how concepts of and mechanisms for rational deliberation have themselves been constructed in conjunction with competing views of life. In this respect, I take as an historical object the very discussions in which
Maienschein’s scholarship intends to participate.18
The dissertation is methodologically closer to Michael Mulkay’s The Embryo Research Debate. Mulkay’s study is a detailed sociological analysis of the debates over human embryo research in the UK in the 1980s.19 This dissertation, by contrast, focuses almost exclusively on the United States. There are, however, several critical moments of transatlantic exchange with the UK, especially in the mid 1980s. For these moments I lean in part on Mulkay’s analysis, and in part on Sheila Jasanoff’s. Jasanoff has
examined the embryo research debates as one component of a cross-national comparative analysis of science and democracy. Her study is the most thorough treatment of
reproductive medicine, human embryo research, and bioethics to date. But as it is only one component of a larger project, she examines the American debates in less depth than is undertaken here. My work is deeply informed by her scholarship and is driven by similar theoretical motivations.20 Besides probing the American history in greater depth, however, I also ground my study more securely in democratic theory, drawing
connections between ethics committee deliberations and specific thinkers and traditions in political philosophy.
18 Jane Maienschein, “What's in a Name: Embryos, Clones, and Stem Cells,” The American Journal of
Bioethics 2, no. 1 (2002): 12-19; This applies even more so to her scholarship on scientific terminology and public deliberation, see Jane. Maienschein, “Human Embryos and the Language of Scientific Research,”
The American Journal of Bioethics 4, no. 1 (2004): 6-7.
19 Michael J. Mulkay, The Embryo Research Debate: Science and the Politics of Human Reproduction (Cambridge University Press, 1997).
Much of the vast literature on the embryo research debates is journalistic political commentary and intended for non-academic audiences. The scholarly literature is
primarily in philosophical ethics, political science, and policy analysis. Each approach brings with it important evaluative concepts—norms, liberal democracy, and policy outcomes, respectively. I will argue, however, that these concepts require historicization. Once they are taken as contingencies of history, essentially contested and constantly in flux, a very different kind of story emerges. Professional bioethics and its philosophical tools came of age during my period of focus. Democracy was itself a contested object in this history with much of the deliberation oriented towards reevaluating notions of public reason, representation, and the common good. In these deliberations the metrics used to identify desirable outcomes (public goods) were as contested as the policies designed to achieve them. While to some extent I will respond to this literature, I will also trace the ways that these evaluative frameworks themselves exerted force in history, shaping deliberation and introducing new kinds of historical actors. One excellent example of this sort of scholarship is Ronald Green’s The Human Embryo Research Debates. Part memoir, part political history and part ethical commentary, the book provides a useful historical account, though it differs from the one presented here. At the same time, Green was (and remains) and active participant in public deliberation and an important actor in this story. Therefore, though I will periodically engage with texts like Green’s on an analytic level, I will treat them as part of the history I am recounting.21
There is a very substantial science studies literature on assisted reproductive technology, especially in vitro fertilization.22 My study begins with human in vitro fertilization and in many respects runs parallel with this literature. However, I am less focused on the in vitro embryo as a transformative technology in human reproduction than as an emergent laboratory research object. Reproductive medicine and human embryo research were, however, conducted in the same setting, often by the same individuals. As such they are inseparably linked. This dissertation is an attempt to examine features of this history that have emerged in conjunction with the post-1978 changes in reproductive medicine that have been neglected in this literature.
A major focus of this dissertation is public ethics deliberation. Though no studies have focused specifically on deliberation surrounding the ethics of human embryo
research, there have been a number of excellent accounts of American bioethics. Most notable is John Evan’s sociological analysis of the professionalization of bioethics and the associated rationalization of moral discourse.23 Evans’ study deeply informs this dissertation project. However, though Evans in some moments examines the human embryo research deliberations, his study focuses primarily on the development of principlist bioethics. Though principlist bioethics plays an important role in the human embryo research debates, it developed largely around human subjects research. With
22 There is an extensive and excellent literature on assisted reproduction, much of it from feminist scholars. See for example: Sarah Franklin, Embodied progress (Routledge, 1997); Sarah Franklin, Dolly Mixtures: The Remaking of Genealogy (Duke University Press, 2007); Sarah Franklin and Helena Ragone,
Reproducing Reproduction: Kinship, Power, and Technological Innovation (University of Pennsylvania Press, 1997); Patricia Spallone, Beyond Conception : the new politics of reproduction, Women in society (Houndmills, Basingstoke, England) (Houndmills, Basingstoke, Hampshire: Macmillan Education, 1989); Charis Thompson, Making Parents : the Ontological Choreography of Reproductive Technologies, Inside technology (Cambridge, MA: Mit Press,, 2005); Sarah Franklin, “Postmodern procreation: a cultural account of assisted reproduction,” Conceiving the new world order: The global politics of reproduction
(1995): 323–45. 23 Evans, Playing God?
abortion-politics always in the background of human embryo research, I will argue that bioethics deliberation faced political resistance and normative complexities that were not present in parallel discussions of bioethics during the same period. Furthermore, Evans’ study joins an analysis of professionalization and jurisdictional claims to authority with an analysis of the rationalization of discourse that leans on Weber and Habermas. I focus less on the history of professional bioethics per se and more on the efforts to construct public ethics bodies out of a variety of forms of expertise. Furthermore, my study takes the contested ontologies of the embryo, both as a laboratory research object and as a discursive construction, as an important element of deliberation. Ontological contestation drew in a wider range of expertise into moral deliberation than purely normative
constructions. In taking into account the role of elites beyond professional ethicists, I see my scholarship as an extension of Evans.
There are a number of other good histories of bioethics that I lean on, including several written by professional bioethicists.24 There is also a small historical and social science literature that critiques the rather abstract approaches taken to concrete problems by American bioethicists. Though I do not engage with this literature directly, it provides an important intellectual background to the present study. In some respect this
dissertation is intended as a contribution to that literature.25
24 Jennifer K. Walter and Eran P. Klein, The Story of Bioethics: From Seminal Works to Contemporary
Explorations (Georgetown University Press, 2003); Stevens, Bioethics in America; Rothman, Strangers at the bedside; Albert R Jonsen, The Birth of Bioethics (New York: Oxford University Press, 2003).
25 Mark Brown, “Three Ways to Politicize Bioethics,” American Journal of Bioethics 9 (February 2009): 43-54; Renee C. Fox, “Ethical and Existential Developments in Contemporaneous American Medicine: Their Implications for Culture and Society,” The Milbank Memorial Fund Quarterly. Health and Society
52, no. 4 (Autumn 1974): 445-483; Renée Claire Fox, Judith P. Swazey, and Judith C. Watkins, Observing Bioethics, 2008; A. M. Hedgecoe, “Critical bioethics: beyond the social science critique of applied ethics,”
Bioethics 18, no. 2 (2004): 120-143; C E Rosenberg, “Meanings, policies, and medicine: on the bioethical enterprise and history,” Daedalus 128, no. 4 (1999): 27-46; Arthur Kleinman, Renée C Fox, and Allan M Brandt, “Introduction: bioethics and beyond,” Daedalus 128, no. 4 (1999); Arthur Kleinman, “Moral
A large literature has emerged around biotechnology, both within the history of science, and in science studies more broadly. Much of this literature has focused on the transformations in the theoretical and institutional organization of the biosciences, especially on interdisciplinarity and on the changing political economy of biomedical research. Much of this literature also engages with the changes that venture capital and an altered intellectual property environment have brought to biomedicine, particularly around biotechnology.26 This dissertation contributes to this literature by setting these developments within larger imaginations of the place of biotechnology within the democratic state.
Historiographical Methodology
As discussed above, my methodological approach to the study of the human embryo as a “laboratory research object” draws on recent scholarship by Daston, Galison, Rheinberger and others. I am also following the lead of this literature in adopting a genealogical framework, tracing changeable objects and concepts over time. In this respect the dissertation reaches through this literature to Foucault’s use of genealogy as a method for historicizing philosophical concepts. I use the genealogy of the embryo as a laboratory research object and locus of moral controversy to historicize notions of public
experience and ethical reflection: can ethnography reconcile them? A quandary for "the new bioethics,”
Daedalus 128, no. 4 (1999): 69-97; Veena Das, “Public good, ethics, and everyday life: beyond the boundaries of bioethics,” Daedalus 128, no. 4 (1999): 99-133; Daniel Callahan, “The social sciences and the task of bioethics,” Daedalus 128, no. 4 (1999): 275-294; Charles L Bosk, “Professional ethicist available: logical, secular, friendly,” Daedalus 128, no. 4 (1999): 47-68; Charles E. Rosenberg, Our Present Complaint: American Medicine, Then and Now, (The Johns Hopkins University Press, 2007), 166ff.
26 Robert Bud, The Uses of Life: A History of Biotechnology (Cambridge: Cambridge University Press, 1993); Martin Kenney, Biotechnology: The University-Industrial Complex (New Haven: Yale University Press, 1986); P. Rabinow, “Prosperity, Amelioration, Flourishing: From a Logic of Practical Judgment to Reconstruction,” Law and Literature 21, no. 3 (2009): 301–320; Rabinow and Dan-Cohen, A Machine to Make a Future; Paul Rabinow, Making PCR: A Story of Biotechnology (Chicago: University of Chicago Press, 1996).
reason, democratic representation, and citizenship, drawing them into relation with science and technology.27
The dissertation is also a history of political institutions. In this vein I am drawing partly on the historiography of American biomedicine, and in particular on histories of the institutional arrangements put in place by the state in response to changing articulations of its duty to protect the health of its citizens. Pubic trust in scientific expertise is an important feature of these institutional changes, particularly around policies of state support and governance of biotechnology. Here I am leaning on the large literature on the history of biotechnology, but also on scholarship on the moral economy of scientific expertise, particularly vis-à-vis public politics.28 Thus Steven Shapin’s scholarship on both early modern and late modern science serves as an important theoretical background to the dissertation.29
Related scholarship has examined how the unique credibility of scientific expertise has been harnessed to by the state to delegate authority, short circuit political controversy or to legitimate itself. For instance, Jasaoff’s study of science advice in regulatory agencies offers support to my study. One thread of my study examines how the advisory model was harnessed to delegate authority over morally complex matters. Jasanoff has written extensively on the way different delegations of problems to scientific
27 Daston, Biographies of Scientific Objects; Lorraine Daston and Peter Galison, Objectivity, 1st ed. (Zone Books, 2007); M. Foucault, “Nietzsche, genealogy, history,” The Foucault Reader (1984): 76–100; Hans-Jorg Rheinberger, Toward a History of Epistemic Things: Synthesizing Proteins in the Test Tube, 1st ed. (Stanford University Press, 1997).
28 Rosemary Stevens, Charles E. Rosenberg, and Lawton R. Burns, History and health policy in the United
States (Rutgers University Press, 2006); Robert M Cook-Deegan, The Gene Wars: Science, Politics, and the Human Genome (New York: W.W. Norton & Co, 1994); Rosenberg, Our Present Complaint. 29 Steven Shapin, “Why the public ought to understand science-in-the-making,” Public Understanding of
Science 1, no. 1 (January 1, 1992): 27-30; Steven Shapin, A Social History of Truth: Civility and Science in Seventeenth-Century England, 1st ed. (University Of Chicago Press, 1995); Steven Shapin, “The Way We Trust Now,” in Trust Me, I'm a Scientist, ed. Daniel Glaser et al. (Counterpoint, 2004), 49-63; Steven Shapin, The Scientific Life: A Moral History of a Late Modern Vocation (University Of Chicago Press, 2008); Steven Shapin and Simon Schaffer, Leviathan and the Air-Pump (Princeton University Press, 1989).
experts is used to bound epistemic space and to “co-produce” epistemic and democratic regimes in different national contexts. The project of this dissertation is molded by this scholarship, and contributes to it by bringing established insights to bear on additional domains.30
Finally, this dissertation is situated within the large literature of controversy studies of science and technology. The human embryo research debates are, in a sense, a single, drawn-out controversy. Much prior scholarship in the social sciences has
demonstrated how controversies can be a productive site for seeing features of social order that are less visible in the quotidian. This dissertation follows this methodological lead. By adopting an historical approach, I trace the genealogies of strands of
controversy, showing how experimental attempts at resolution were conceived, challenged and cast aside, while laying the foundation for the next iteration. The controversy over human embryo research is an extraordinary case precisely because it combines a sufficiently long historical duration to observe the role of chance with a powerful political intensity.
STS and Co-production
Though primarily historical in method, this dissertation is theoretically situated within Science and Technology Studies (STS). Because I see the analytic traditions in
30 Yaron Ezrahi, The Descent of Icarus: Science and the Transformation of Contemporary Democracy (Cambridge Mass.: Harvard University Press, 1990); Sheila Jasanoff, The Fifth Branch: Science Avisers as Policymakers (Harvard University Press, 1994); Sheila Jasanoff, “Product, process, or programme: three cultures and the regulation of biotechnology,” Resistance to new technology: Nuclear power, information technology and biotechnology (1995): 311–331-311–331; Sheila Jasanoff, “Civilization and madness: the great BSE scare of 1996,” Public Understanding of Science 6, no. 3 (1997): 221-221; Sheila Jasanoff, “Citizens at Risk: Cultures of Modernity in the US and EU.,” Science as Culture 11, no. 3 (2002): 363-380; Jasanoff, Designs on Nature; Theodore M. Porter, Trust in Numbers (Princeton University Press, 1996).
history of science and STS as of a piece, I have depended heavily on the larger STS literature for theoretical guidance.
The dissertation touches on topics that have been thoroughly examined in STS, including expertise, credibility, boundary construction, discourse, and the co-production of natural and social orders. I draw heavily on this analytic work, particularly scholarship that examines the position of science within the larger (democratic) social order.31 Many of the threads of STS most relevant to my project have already been drawn together in the concept of co-production. Co-production has been proposed as an analytic lens though which to see the mutual and simultaneous co-construction of natural and social orders.32 It is a methodologically powerful concept because it applies the strong programme’s principle of symmetry to domains that transcend mere knowledge-making, thus encouraging study of S&T as a piece of the larger social and political order, though without privileging either social or technoscientific accounts of the world. The idiom of co-production “stresses the constant intertwining of the cognitive, the material, the social and the normative.”33 This dissertation tells a story that is co-productionist through and through. As I will demonstrate, the debates over human embryo research actively and often explicitly drew together features of the world that are generally held to be separate in American culture. For this reason, the concept of co-production shapes the interpretive framework of this dissertation, both as a methodological orientation that draws together
31 Shapin and Schaffer, Leviathan and the Air-Pump; Porter, Trust in Numbers; Bruno Latour, Politics of
Nature: How to Bring the Sciences into Democracy (Cambridge, Mass: Harvard University Press, 2004); Jasanoff, Designs on Nature; Steve Fuller, The Governance of Science: Ideology and the Future of the Open Society, (Open University Press, 2000); Ezrahi, The descent of Icarus.
32 Jasanoff, States of Knowledge: the Co-production of Science and Social Order. 33 Ibid., 6.
relevant elements of STS scholarship and as an analytic concept for attuning one to profound, though poorly understood, social phenomena.
Political Theory
Finally, this dissertation is an effort to comment on normative political theory through empirically grounded, historical analysis. It traces a set of transformations not only in the laboratory and the clinic, but in ways of imagining democracy in
contemporary America. An important strand of these imaginations emerges out of American political theory, especially the work of John Rawls. Rawls’ political philosophy, and the lines of thinking derived from it, have come to dominate late twentieth century American political and moral philosophy. As applied ethics has been integrated into bureaucratic practices and the formulation of policy, normative theorists of democracy have also become active agents in its construction and maintenance. A primary project of this dissertation is to explicate the complex and often surprising manifestations of Rawlsian ideas in American politics. The analytic purpose here is threefold. First, I am tracing the movement of normative theory into the world of practice, especially in relation to science and technology. Second, I am situating this peculiarly American strand of political theory within American political culture more generally. I argue that certain features of American political culture have been tacitly incorporated into post-Rawlsian American political theory. Third, I attempt to engage directly with this literature by putting post-Rawlsian political theory, especially in the form of Deliberative Democratic Theory, to the test.34 I argue that the privileged position
34 Some key texts include, Amy Gutmann and Dennis Thompson, “Deliberative Democracy Beyond Process.,” Journal of Political Philosophy 10, no. 2 (June 2002): 153; Amy Gutmann and Dennis
of the objective fact, and thus of scientific expertise, in American political culture has been incorporated into this body of scholarship, though largely without being recognized, let alone theorized. My historical study demonstrates the unexpected and surprising result of this undertheorization, and thus of the relevance of STS analysis to abstract, normative political theory.
Dissertation Outline
Chapter 1 examines the period between the mid 1960s and 1980. During this period, scientific advances were made in human in vitro fertilization and embryo culture leading to the birth of the first IVF conceived child in 1978. During the same period, congressional concerns with the ethics of biomedical research led to the formation of the first national ethics bodies. The chapter shows, in particular, how the Ethics Advisory Board (EAB), constituted in 1978 to provide case-by-case review of ethically complex research proposals, adopted a model of pluralist representation. The body dedicated much of its efforts to identifying the relevant elements of American pluralism while attempting to represent in its own explicitly tentative reasoning the diversity of American moral intuitions. The EAB was dissolved in 1980, beginning a de facto moratorium on
human embryo research which would last until 1993.
Thompson, Democracy and Disagreement (Belknap Press, 1998); Frank Fischer, “Citizen participation and the democratization of policy expertise: From theoretical inquiry to practical cases,” Policy Sciences 26, no. 3 (1993): 165-187; John Rawls, Political Liberalism, second edition. (Columbia University Press, 2005); David M. Estlund, Democratic Authority: A Philosophical Framework (Princeton University Press, 2007); relevant, but distinct from the American school is Jürgen Habermas, The Theory of Communicative Action
(Cambridge: Polity Press, 1986); For an interesting example of how deliberative reconceptions of the citizen have affected broader moral concepts, including around biotechnology, see Jürgen Habermas, The Future of Human Nature (Cambridge, UK: Polity, 2003); this school includes applied efforts to bring together political theory and political science to construct normatively authorized deliberative experiments, proposed as an alternative mode to other forms of policymaking, including simply vote aggregation Fishkin, Democracy and Deliberation; James S. Fishkin, When the People Speak: Deliberative Democracy and Public Consultation, Har/DVD. (Oxford University Press, USA, 2009).
Chapter 2 examines the period between 1980 and 1995, a period when the in vitro embryo went from a rare laboratory object to an element of widespread clinical practice. By the late 1980s, there were hundreds of IVF clinics in the United States treating thousands of patients annually. In response to the rapid growth of this largely
unregulated industry the American Fertility Society created an Ethics Committee in 1985 (the AFSEC). Treating biological facts as extra-political and morally neutral, the AFSEC adopted a technocratic approach to deliberation of the moral status of the embryo,
introducing a new scientific term—preembryo—to discipline discourse into taking relevant facts into account.
In 1994, following a congressional intervention to end the de facto moratorium, the National Institutes of Health established the Human Embryo Research Panel to provide an ethical assessment of the research domain. HERP was created at a moment of increasing scientific interest in human embryo research from domains well beyond reproductive biology. HERP drew on the Rawlsian theory of public reason to imagine an ideal polity bound together by a mutual commitment to rational engagement and
organized around rationally secure scientific knowledge. Congress and the President reacted strongly against HERP’s recommendations. In 1995, Congress passed a ban on the use of Health and Human Services appropriations for human embryo research.
Chapter 3 explores the period from 1996-2002. During this period, two scientific developments, mammalian cloning and human embryonic stem cell derivation,
dramatically altered the debates. The embryo acquired a physical (and metaphysical) mercuriality that transformed both scientific research and ethical deliberation. The scientific breakthroughs also initiated a period of heated political debate on both the state
and federal level, culminating in a restricted funding policy for human embryonic stem cell research that was put in place in 2001 by newly elected President George W. Bush.
The scientific developments of the late 1990s prompted a vigorous reassessment of the obligations of the state to science and to its citizens. Two public ethics bodies addressed these questions during this period. The National Bioethics Advisory Commission, formed in 1996 by President Clinton, advanced a new theory of public reason, soliciting explicitly theological moral accounts and translating them into a common currency of secular rationality. Characterizing electoral and legislative politics as failed deliberation, NBAC positioned itself as the authoritative organ of public reason, translating the fraught politics of the public square into what the commission viewed as reasoned, and neutral, common premises.
The President’s Council on Bioethics (PCB), formed by President Bush in late 2001, took a radically different approach to ethical reasoning. The PCB adopted a communitarian orientation that treated reason-giving, including scientific reason-giving, as always already embedded in a vision of the good. The PCB positioned itself as a model deliberative body that would perform a pedagogical service to the attentive public. To this end, the Council attempted to find a common language that could emerge out of a deliberative engagement with the embryo itself, unbounded by the technocratic authority of science or the schematic constructions of American moral pluralism that had been advanced by previous bodies.
Chapter 4 examines how the PCB’s project of finding a common language was appropriated by a group of scientists who set about to reform the language employed in public deliberation over human cloning. Invoking science as an extra-political authority