Born and Made: An Ethnography of Preimplantation Genetic Diagnosis / Edition 1 available in Paperback
Among the many novel findings of this pathbreaking ethnography of reproductive biomedicine is the prominence of uncertainty and ambivalence among PGD patients and professionalsa finding characteristic of the emerging "biosociety," in which scientific progress is inherently paradoxical and contradictory. In contrast to much of the speculative futurology that defines this field, Born and Made provides a timely and revealing case study of the on-the-ground decision-making that shapes technological assistance to human heredity.
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Born and MadeAn Ethnography of Preimplantation Genetic Diagnosis
By Sarah Franklin Celia Roberts
Princeton University PressCopyright © 2006 Princeton University Press
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IntroductionBABIES BY DESIGN?
Couples (or lone mothers) will soon be able to sort through a collection of embryos and select for a place in our midst those with the most desirable gene profiles. And why indeed would those parents in our age of excess, who can afford to press on their offspring all the advantages that health and education can afford, choose to deny them any available genetic privileges at birth? -Walter Gratzer, "Afterword" to James D. Watson, A Passion for DNA: Genes, Genomes and Society. I can understand it is a very grey area. Because obviously ... we've used PGD [preimplantation genetic diagnosis] because we didn't want to have another child that was going to die within 12 months. But I mean,... at what point do you draw the line? At a child that dies at 2 years, 5 years, 10 years, 20 years, 30 years? Where? ... What conditions are we going to allow PGD to be used for? ... I don't know where the line should be drawn. -Anne, PGD patient
One of the late twentieth century's most infamous offspring, the "designer baby" has become, alongside the clone, a familiar figure in debates about new reproductive andgenetic technologies in what has come to be known as the "postgenomic" era. Like the iconic image of the "test-tube baby" that preceded it, the "designer baby" signifies a disturbing mixture of newfound biogenetic control, consumer demand, and parental desire. An ambivalent figure, the designer baby is at once celebrated as a medical-scientific breakthrough and decried as an example of "science gone too far." Alongside media celebrations of joyful parents enabled to have a healthy child with the assistance of modern medical technology are ominous depictions of too much choice and control over reproduction. Above all, the "designer baby" symbolizes and embodies the question of limits: How far should science be allowed to go? Who should decide, and how? How will "society" be protected against the possibility of reproductive biomedicine "going too far"? And how can the needs of "desperate" individual parents and families be balanced against the needs of society "as a whole"?
The very form of these familiar questions-full of vague, uncertain agencies and urgencies-is indicative of the difficulty of finding adequate language to address what are increasingly prominent and, in the twenty-first century, increasingly intimate questions about reproductive and genetic choice and control. This same question of finding adequate language is evident in the very term "designer baby," which, as the contrast between the two opening epigraphs demonstrates, evokes very different images, from choosy parents seeking "genetic privileges" for their children to cautious parents who feel obligated to avoid future harm to their potential offspring. For the last half century new forms of reproductive and genetic intervention-from the early research on the manipulation of mammalian embryos in the 1950s to the development of in vitro fertilization (IVF) in the 1970s, and its rapid expansion since- have been the subject of increasing social, ethical, and political concern, almost always framed as a conflict between the need for greater medical-scientific progress and the risks of "going too far." But who are the "we" of the "society" in need of protection against "science" going too far? What is "too far," and who speaks for "science"? How is the future being imaged and imagined in such debates, and how will limits be devised and implemented? Whose interests will prevail, and who is put at greater risk by medical-scientific intervention into not only reproduction but, increasingly, heredity?
Born in Britain
It is a measure of the degree of controversy surrounding IVF, embryo research, and more recently cloning and human embryonic stem cell derivation that, from their inception, such techniques have been topics that generate widely divergent responses, not only at the level of individual opinion, but equally at the level of national governance and policy (Banchoff 2004; Jasanoff 2005). Britain has in many respects been at both the center and the forefront of the controversies surrounding a cluster of new technologies associated with reproductive biomedicine, not only because so many "firsts" were born in Britain but also because it has played a more substantial role than any other country in the creation of rigorous legislation and policy strictly limiting technological manipulation of "human fertilisation and embryology" (Gunning 2000; Jackson 2001; Morgan and Lee 1991).
Home to the world's first test-tube baby (1978), first clinical use of PGD (1990), and first cloned "higher" vertebrate (1996), as well as being one of the leading countries involved in human embryonic stem cell derivation and "banking," Britain has simultaneously pursued an arduous course of legislative and regulatory innovation to establish a uniquely robust-but-flexible system of laws and codes of conduct. These are backed up by criminal law, enforced through a licensing body, and subject to constant revision, while being bound by the "will of Parliament" expressed in the 1990 Human Fertilisation and Embryology Act.
This much-admired and widely emulated system of governance has its roots in the Committee of Inquiry chaired by the Oxbridge philosopher Mary Warnock in the 1980s, which both provided the rationale for and then successfully established the very liberal but highly regulated climate of reproductive biomedicine that is increasingly seen to be distinctively British (Warnock 1985). Significantly, however, and as Mary Warnock herself was at pains to make clear in her report, the basis for the committee's recommendations, while informed by perspectives from moral philosophy, theology, and bioethics (fields in which several of the committee members held prestigious positions), was essentially sociological rather than philosophical. Conspicuously, and often controversially, eschewing the perennial jousting match over "the moral status of the human embryo," the primary question guiding Warnock was "what kind of society can we praise or admire? In what sort of society can we live with our conscience clear?" (1985, 3). The first premise of Warnock's approach was "to take very seriously the ... wide diversity in moral feelings" and to determine which feelings were most strongly held in common. For Warnock, the most strongly shared social consensus was that "people generally want some principles or other to govern the development and use of the new techniques. There must be some barriers that are not to be crossed, some fixed limits, beyond which people must not be allowed to go.... The very existence of morality depends on it. A society which had no inhibiting limits ... would be a society without scruples, and this nobody wants" (1985, 2, emphasis added).
"The Warnock position," as sociologist Michael Mulkay has argued, was the outcome of an effort to acknowledge fundamentally opposing views and find the path of greatest social consensus among them (Mulkay 1997). The report's primary recommendation-to establish a licensing authority that would provide overall regulation-was based on an original "social contract" devised by Warnock, through which maximum scientific innovation would be encouraged, so long as it was subject to the very strictest levels of government regulation. This "Warnock strategy" in effect substituted robust regulatory infrastructure for "principalism," thereby establishing a pattern that has prevailed ever since in Britain. It is a strategy that has been widely acclaimed, and more often emulated internationally, than any other.
Importantly, it is a strategy that is based not on absolute values of right and wrong but on the "bottom line" of deliberation within an established legislative system. As Warnock herself described the process of her committee in retrospect, writing in her 2003 publication Nature and Morality:
An absolutely central consideration in the work of [our] committee ... was the difference between what one might personally think was sensible, or even morally right, and what was most likely to be acceptable as a matter of public policy.... Time and again we found ourselves distinguishing not between what would be right or wrong, but between what would be acceptable or unacceptable. (Warnock 2003, 98-99, emphasis added)
Instead of a resolution of moral differences based on philosophical principles, which Warnock has described as "impossible" (2003, 99), she chose "to try to assemble a coherent policy which might seem, if not right, then at least all right, to the largest possible number of people" (2003, 99).
It is primarily for this reason-that the basic principle informing British regulation of new reproductive and genetic technologies is to achieve workable and sustainable policy-that the British government has, from 2000 onward, increasingly funded social-scientific research into the area we might call "reprogenomic studies" or the social study of biomedicine. Bioethics too is moving in this direction, as a new genre of empirically based "context-specific ethics" increasingly replaces debates over utilitarianism versus consequentialism, or dignitarianism versus liberalism (Haimes 2000; Hedgecoe 2003). The research presented in this book was funded under just such an initiative, coordinated by the Economic and Social Research Council (ESRC), which in 2001 commissioned a comprehensive program of more than forty studies on the topic of "innovative health technologies" (Brown and Webster 2004). The two-year study on which this book is based also benefited from funding by the ESRC Genomics Programme, inaugurated in 2002, under which more than thirty million pounds (US$60 million) was committed to social-scientific study of genomics, stem cells, and reproductive biomedicine. This vast investment in the social science of biomedicine in Britain dwarfs that of any other country and is unprecedented. It is a further extension of the "Warnock strategy," through which an essentially sociological approach is pursued to address the questions of how to fill in the "we" of the "society" that needs to define acceptable limits to reproductive and genetic intervention, maintain a shared definition of progress in this Area, and produce credible regulation, governance, and policy.
The research informing this book took place in Britain during a period of dramatic technological convergence that may take future historians many years to unravel, even with the benefit of hindsight. In the 1980s, few people saw in the infancy of IVF a platform for the successor sciences to genomics. Indeed few people imagined IVF as anything other than a treatment for female infertility or, even more specifically, blocked fallopian tubes. However, the expansion of IVF throughout the 1980s and 1990s was driven not only by its popularity, its commercialism, or its soon-discovered capacities to treat a much wider range of infertility-such as male infertility and infertility of unknown origin-but by its potential to be used both to prevent genetic disease and to enable research on human embryos that might lead to stem cell derivation. As Robert Edwards (one of the codevelopers of IVF) has insisted throughout the technique's rapid clinical expansion to become, in less than two decades, a routine procedure practiced worldwide, IVF was always seen as an experimental research method with enormous potential (R. Edwards 2004, 2005a, 2005b). That potential began to become much clearer in the 1990s, with the successful cloning of Dolly the sheep by Ian Wilmut at Scotland's Roslin Institute and, only two years later, with Jamie Thomson and John Gearhardt's successful derivation of pluripotent human embryonic stem cells in the United States. These achievements were "crowned" by the publication of the first "complete" draft sequence of the human genome project in 2001. Britain's first successful hES cell line, WT3, was created by Susan Pickering, Peter Braude, and Stephen Minger at the London clinic where this study was based in 2003, one year following the United Kingdom's commissioning of a National Stem Cell bank (Pickering, Braude, et al. 2003).
As noted in the preface, it is a central argument of this book that the development of PGD played a pivotal role in relation to both cloning and stem cell research by providing the first "bridge" or merger between assisted conception, or more precisely IVF, and clinical genetics, thus establishing IVF as a platform technology not only for fertility interventions but for genetic diagnosis. In turn, the ability to "reprogram" embryonic development is at the heart of both cloning and stem cell technology. Increasingly, the genetic and the epigenetic, or the molecular and the morphological, have been recombined in accounts of situated genetic action within cellular environments, in some cases even reversing the powerful "one-way" coding function of DNA. As Ian Wilmut's experiments with somatic cell nuclear transfer demonstrated, the powerful egg cytoplasm "tells the DNA what to do."
Consequently, IVF, PGD, and research on human embryonic stem cells are now so inextricably intertwined that it is impossible to debate the social, ethical, or political implications of any one of them separately. They have all, in a sense, become "frames" for each other. A key focus that unites these technologies is the possibility of harnessing, and combining, mechanisms of genetic, embryonic, and cellular repair. In May of 2005, in London, at the opening session of the Sixth International Symposium on Preimplantation Genetics, James Watson and Robert Edwards shared the platform for a session titled "Back to Basics," in which the full implications of the merging of genomics and embryology could be seen in the potential not only to screen every child for abnormal polymorphisms but to discover the genetic and epigenetic causes of cancer. As the Nobel laureate and codiscoverer of the structure of the double helix began his talk in characteristically confrontational language, by asking "If we could make a better human baby by adding genes, why shouldn't we?" (Watson 2005) , so likewise did the codeveloper of IVF, Robert Edwards, decry the "disaster zone" of aneuploidy and point to the way forward for gene targeting in experimental embryology (R. Edwards 2005a).
A Social Science of Genomics
The past two decades have also seen the emergence of a new subdiscipline of literature on assisted conception and the new genetics, published since the mid-1980s, in which qualitative approaches, such as ethnographic fieldwork and interview material, comprise the main sources of data (see Thompson 2005 for a review). The effort to collect firsthand accounts of reproductive and genetic biomedicine has resulted in more than a dozen monographs (including those of G. Becker 2000; Bosk 1992; J. Edwards 2000; Finkler 2000; Franklin 1997; Inhorn 1994; Kahn 2000; Mitchell 2001; Rabinow 1999; Ragone 1994; Rapp 1999; Rothman 1986, 1994; Sandelowski 1993; Thompson 2005; and Throsby 2004). Already it is also possible to observe the rise of a number of important subfields including the anthropology of reproduction (Ginsburg and Rapp 1995; Franklin and Ragone 1998a, 1998b; Inhorn and Van Balen 2002; Strath-ern 1992b), the anthropology of genomics (Heath and Rabinow 1993; Goodman, Heath, and Lindee 2003, Rainbow 1996, 1997), and the anthropology of biomedicine (Brodwin 1999; Franklin and Lock 2003a, 2003b; Konrad 2005a, 2005b). Moreover, these emergent fields are not entirely "new" in that they build on well-established subdisciplines such as medical anthropology, the sociology of health and illness, and social studies of science and technology-as well as other disciplinary traditions, such as nursing, psychology, and of course medicine itself. In the United Kingdom, where medical sociology is the largest of the subdisciplines of the British Sociological Association, reproductive and genetic technologies have been the subject of an increasing amount of research from as early as the 1980s (see in particular Homans 1985; McNeil, Varcoe, and Yearley 1990; and M. Stacey 1992), much of which was prompted by feminist concerns (see especially Spallone and Steinberg 1987; Stanworth 1987).
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Table of Contents
List of Figures ix
Introduction: Babies by Design? 1
Chapter 1: What Is PGD? 25
Chapter 2: Studying PGD 75
Chapter 3: Getting to PGD 94
Chapter 4: Going Through PGD 132
Chapter 5: Moving On from PGD 163
Chapter 6: Accounting for PGD 196
Conclusion: PGD Futures? 218
What People are Saying About This
Born and Made is the first full-length qualitative study of preimplantation genetic diagnosis. Using the methods of cultural studies and ethnography, Franklin and Roberts observe a London hospital laboratory that delivers this service to couples whose genetic history is fraught with dead children, miscarriages, and infertility. This is a compelling story of science in action.
Rayna Rapp, New York University
Franklin and Roberts provide an innovative analysis of preimplantation genetic diagnosis (PGD) through an ethnographic account of scientists, clinicians, genetic counselors, and patients. The everyday stories in this book will disprove popular fears that PGD will usher in a 'brave new world' of 'designer babies.' In Born and Made, readers will discover new languages for discussing the transformative sociologies of reproductive technology.
Stefan Helmreich, "Massachusetts Institute of Technology"
"Born and Made is the first full-length qualitative study of preimplantation genetic diagnosis. Using the methods of cultural studies and ethnography, Franklin and Roberts observe a London hospital laboratory that delivers this service to couples whose genetic history is fraught with dead children, miscarriages, and infertility. This is a compelling story of science in action."Rayna Rapp, New York University"Franklin and Roberts provide an innovative analysis of preimplantation genetic diagnosis (PGD) through an ethnographic account of scientists, clinicians, genetic counselors, and patients. The everyday stories in this book will disprove popular fears that PGD will usher in a 'brave new world' of 'designer babies.' In Born and Made, readers will discover new languages for discussing the transformative sociologies of reproductive technology."Stefan Helmreich, Massachusetts Institute of Technology