The Handbook of Science and Technology Studies Part 13 ppt

826 Adam M Hedgecoe and Paul A Martin of that competition (cashed out in terms of patents and testing licenses) both for patients, their representatives, and clinical practice in the cancer clinic (Parthasarathy, 2003; Bourret, 2005) and for national differences over genetic privacy (Parthasarathy, 2004) and genetic testing cultures (Parthasarathy, 2005; Gibbon, 2002) If the case of the BRCA1 and 2 genes and breast cancer is to be seen as encapsulating expectations concerning genetic testing for complex diseases, then as in cystic fibrosis, STS teaches caution about simplistic assumptions regarding the delivery of such testing A related point is made by Nelis (2000) in a comparative study of the management of uncertainty in genetic testing services in the Netherlands and the United Kingdom, where she argued that the construction of expectations and the management of the future are shaped by the structure of the local networks In focusing on specific technologies (rather than conditions), research has revealed just how much effort it takes to get a new form of testing or therapy into the clinic (Martin, 1999; Hedgecoe, 2003; Hedgecoe & Martin, 2003; Hedgecoe, 2004) Partly this may be because of the tendency of STS research (unlike, say, medical sociology) to focus on knowledge at the expense of practice, yet even when a clinical intervention has been available for some time, there is still considerable flexibility over how it is seen in the lab, in the clinic, and by patients (Rapp, 2000) New molecular techniques are incorporated into existing clinical practices rather than sweeping them aside in a revolution (Nukaga, 2002) The range of conditions explored in this work and the limitations faced by these technologies when they enter the clinic highlight the point that very few of the expectations that were used to justify the HGP have been realized to date, with almost all the new clinical techniques restricted to established genetic niches REPRESENTATION AND CULTURE OF GENOMICS It is when debates around genomics leave the lab, clinic, or boardroom and enter the broader culture and public discourse that they become the most overtly political In the case of public understanding of science, the expectations about genomics raised are different from at other sites Rather than there being expectations about science and technology, in the case of PUS, the expectations concern people’s reactions and behavior toward science and technology If we view the “deficit model” of PUS as constructing typical expectations about how people will react toward genomics, then, given STS’s historical role in challenging this model and the high profile human genetics has in public debate, we should not be surprised to see work in this area undermine and question simplistic beliefs about how the public will respond to genomics Perhaps the clearest evidence that within STS the transformational approach to genomics can be highly critical of developments in science and technology lies in Dorothy Nelkin’s sustained critique of the way in which modern genetics is portrayed in the media and popular culture (Nelkin, 1994; Nelkin & Lindee, 1995, 1999) Clearly written from a position that takes developments in modern genetics as somehow different from what has gone before, Nelkin’s work, and that of other scholars like Abby Genomics, STS, and the Making of Sociotechnical Futures 827 Lippman (Lippman, 1994, 1998), can be criticized for lack of historical depth and methodological problems (Condit, 1999, 2004) but not for political urgency and critical drive Of course, it is perfectly possible to carry out a historically rooted analysis of the cultural representation of genetics and produce a critical piece of work (Turney, 1998; Smart, 2003), and overall STS researchers have tended to stay close to the discipline’s qualitative roots, eschewing the survey approach often used by other social sciences to study this area (Davison et al., 1997) Of particular note is the extensive work done by Anne Kerr and colleagues who have used interviews and focus groups to explore the different ways in which geneticists (Cunningham-Burley & Kerr, 1999; Kerr et al., 1997, 1998a) and nonscientists (Kerr et al., 1998b,c) view developments in genetics and associated ethical issues This rigorous empirical basis has provided a foundation for a subsequent critique of the way in which some social theorists have engaged with human genetics (Kerr & Cunningham-Burley, 2000) and developing concepts around the political life of human genomics (Kerr, 2003a,b,c) A core element of this and other work (Barns et al., 2000; Irwin, 2001) is to incorporate nonscientist opinion on genetics into discussions about the development of this technology, showing not only that members of the public are capable of understanding complex scientific concepts but also that they can contribute in a meaningful way to debates around the regulation of these new technologies When facing expectations about genomics, public and professional cultures tend to divide, with the concerns of professionals (both scientific and non-STS-based social scientists) being rooted in traditional models of the public and technology, with ethical expectations marginalized and simplistic solutions suggested To some extent it might be seen as a failure that the public culture emphasized through STS for so many years has had such a low profile among practicing scientists, yet whether we take a transformational or contextual position, the increased presence of genomics in the press and public discourse seems assured That STS shows how scientists and policy-makers who refuse to reorient their expectations in accordance with how the public reacts engender resistance and even failure (Robins, 2001) provides an opportunity for work in this area to feed directly into political discussion over how societies might respond to new technologies Contextualists might take the opportunity to highlight the public’s fears of, for example, racialized science (Duster, 2001) while, as the next section discusses, transformationalists may show how particular groups of nonexperts adapt and adopt genetic knowledge to serve their own social needs The point is less about whether genomics is transformative of wide cultures and publics but rather that this context presents STS scholars working in this area with a unique opportunity to engage with public political debate CREATION OF NEW GENOMIC IDENTITIES One of the most influential recent strands of argument in the field of the social studies of the life sciences concerns ideas of biosociality (Rabinow, 1996a) and biological 828 Adam M Hedgecoe and Paul A Martin citizenship While the origins of these ideas may be see as formally lying outside the realm of STS, they have shaped much of the debate on the creation of new genomic identities The initial focus of work in this area arose from studies of new reproductive technologies and the development of genetic testing services for mainly rare monogenic conditions (Rapp, 1998, 2000) Research has recently started to look at more common complex disorders Finkler, drawing on the experience of women who have a hereditary risk of breast cancer, argues that the presentation of research findings has led to a new genetic determinism, the medicalization of kinship, and changing ideas about the significance and meaning of kinship (Finkler, 2000; Finkler et al., 2003) In particular, she shows how the experience of the new genetics can transform a healthy person into a patient without symptoms and places increasing emphasis on biological rather than social determinants of health and illness However, writing from within the contextual approach, Kerr has criticized studies of this sort for lacking empirical evidence and overemphasizing the role of genetics as a consequence of giving too much weight to the role of biological knowledge in shaping life choices (Kerr, 2004) In contrast to seeing the new genetics as largely negative in its consequences for an individual’s sense of self, Novas and Rose argue that knowledge of genetic risk does not generate fatalism but induces new relations to oneself and one’s future, and a new set of obligations and biological responsibilities (Novas & Rose, 2000) This in turn is creating new individual and collective identities such as those embodied in patient groups for muscular dystrophy or Huntington’s disease These can challenge ideas of stigma and exclusion, as well as dominant medical discourses Rabinow has called this creation of new subjectivities “biosociality,” as distinct from Foucault’s concept of biopower in which life and its mechanisms are calculable and this knowledge is used to discipline both bodies and populations This perspective is explicitly transformative, distancing as it does modern genomics from traditional concerns about eugenics This does not mean that there are not ethical issues, of course, simply that they are of a new kind (Rose, 2001) It should be noted that other nonmedical genetic technologies, such as the development of genetic ancestry testing, are also creating new forms of collective and individual identity (Tutton, 2004; Nash, 2004) Following on from this, it is argued that the emergence of new identities based on ideas of genetic susceptibility and risk, and the embodied disciplines and representations of rights and responsibilities that are being co-constructed through new screening and public health programs, constitute a new form of biological or genetic citizenship (Rose & Novas, 2004) Through the fulfillment of the duties to know and manage genetic risk in order to protect themselves and their families, individuals are seen as constructing themselves as healthy and responsible citizens (Petersen, 2002; Polzer et al., 2002) Hovering between these two positions is work like that of Taussig, Rapp, and Heath, who, in their research on the “Little People of America” patient group, explore a range of technological interventions (such as surgery or genetic testing) using the concept of “flexible eugenics” to point out the positive and negative options for self-identity that arise from genetic Genomics, STS, and the Making of Sociotechnical Futures 829 technologies (Taussig et al., 2003) Similarly, Callon and Rabeharisoa note a number of ways in which people resist the imposition of such genomic identities (Callon & Rabeharisoa, 2004) Thus, we suggest that while new genetic and genomic knowledge can be seen as helping constitute distinct new forms of identity, subjectivity, and citizenship, the extent to which these transformations are happening outside very tightly defined niches (patient groups for rare genetic diseases) or represent a clear break with the past remains unclear As such, we feel that STS scholars ought to display caution with regard to expectations vis-à-vis genomics’ impact on social identity GOVERNANCE OF GENOMICS Research on the governance and regulation of genomic technologies has been fundamentally shaped by earlier work on the ethical, legal, and social issues (ELSIs) raised during the controversies surrounding the development of recombinant DNA (rDNA) and biotechnology, and the political response to these concerns With a few notable exceptions (Nelkin & Tancredi, 1980, 1994; Duster, 1990), little of this work was from an STS perspective, most of it having a largely normative agenda that critiqued the potential hazards and social problems caused by emerging genetic technologies There have also been important national differences between the United States and European states in terms of political and institutional responses and also in the type of scholarship that has been funded in this area Broadly speaking, U.S ELSI research has been dominated by bioethicists and lawyers, while in the United Kingdom social scientists have played the key role One consequence is a relative lack of U.S STS studies in this area During the 1980s and early ’90s many of the institutional mechanisms and regulatory regimes designed to control early rDNA research and first-generation biotechnology products were established, and a number of STS scholars have analyzed their creation in detail (Bennett et al., 1986; Wright, 1994, 1996; Gottweis, 1995, 1998) This is important work but, strictly speaking, lies beyond the scope of this chapter In contrast, significantly less attention has been given to more recent changes in these regimes brought about by the turn to genomics and the development of new technologies, such as genetic screening and gene therapy In looking at the broad field of genomics and postgenomics, Gottweis has argued that “ the science of genomics is introducing a number of fundamental transformations in the practice of modern biology and medicine, in pharmaceutical industry, in society and culture” (Gottweis, 2005: 202) He goes on to suggest that there is a gap between this challenge and official policy responses, which might ultimately lead to a crisis of confidence in medical biotechnology The small body of work that examines the governance of genomics in more detail is mainly United Kingdom–based Salter and Jones have studied recent changes in the overall regime governing human genetics in the United Kingdom In particular, they have charted the creation of a complex system of statutory regulatory bodies and 830 Adam M Hedgecoe and Paul A Martin nonstatutory expert advisory committees This system was reconfigured following what was constructed as a major crisis of trust following the public rejection of genetically modified food in the late 1990s and has adopted a discourse of open government, based on the language of public engagement and greater transparency, as a legitimating strategy (Jones & Salter, 2003) In a similar study of the regulation of human genetics at the EU level, Salter and Jones (2002) have shown that similar pressures have forced policy-makers to engage with a greater range of stakeholders and publics, as well as placing more emphasis on the role of expert bioethicists in mediating disputes An important recent addition to the literature is Jasanoff’s three country comparison of the governance and regulation (including informal forms such as bioethics) of biotechnology, which provides an important basis for future STS work in this area (Jasanoff, 2005) There have also been studies of the governance of specific genomic and genetic technologies, including genetic databases (Martin, 2001; Petersen, 2005) and genetic testing (Martin & Frost, 2003) in the United Kingdom, as well as a comparative U.S./U.K study of genetic privacy (Parthasarathy, 2004) In particular, these have shown how specific innovations are co-constructed with regulatory regimes and how they are shaped by local political, cultural, and institutional factors Considerable attention has been paid to exploring the new forms of governance and public engagement that seem to have become associated with genetics and biotechnology in the United Kingdom over the last decade (Tutton et al., 2005; Kerr, 2004; Purdue, 1999) This research suggests that, while important changes have occurred in the way in which the public is constructed and engaged by policy-makers, established power relations continue to be reproduced Furthermore, the narratives of choice and responsibility that are a common hallmark of policy discussions in this area are seen to frame the problems associated with new genetic technologies in ways that shift attention away from broader questions of social priorities and the goals of scientific research (Kerr, 2003c) Furthermore, Anne Kerr argues that it is premature to talk about a new form of genetic citizenship, as many questions remain unanswered about how the new rights and responsibilities of different actors are defined and exercised in practice (Kerr, 2003a) It therefore appears that while genomics has been associated with some significant changes to institutional arrangements governing biotechnology, it has not prompted a completely new regime Additional important drivers of change can be identified, including loss of public trust, and this has led to new policy discourses and experiments in public engagement The difficulty in breaking down established divisions of expertise and institutional barriers casts doubt over the idea that we are seeing new forms of citizenship emerge CONCLUSION Through a review of the STS literature on genomics the aim of this chapter was to answer two broad questions: What sociotechnical expectations and transformations are being associated with the rise of genomics? What is seen as new and specific to Genomics, STS, and the Making of Sociotechnical Futures 831 genomics, and what is believed to be the extent of sociotechnical change? As we might expect from a discipline that teaches us to question the apparently straightforward facts presented by science, work on STS forces us to challenge the assumptions that underpin even such obvious questions To some extent the presence of a strong contextual perspective in STS scholarship, questioning claims about the transformational impact of genomics, raises doubts not just about the wording of these two questions but about the nature of this chapter itself As STSers, our natural instinct may well be to assume novelty on the part of scientific and technological developments, in terms of both technical change and social and ethical impact Yet the discipline’s strong links to the history of science provide a conduit through which contextual assumptions can flow, challenging the automatic belief that every technological development implies a revolution We accept that our own backgrounds mean that the contributions of sociologists are perhaps overemphasized, but we feel that the picture of STS scholarship painted in this chapter should be broadly recognizable to people working in this field As noted earlier, the point of this chapter is not to adjudicate between these different ways of looking at genomics The richness of debate, variety of case studies, and rigor of research in this area stems in part from the existence of these different ways of seeing the same material Rather, we would like to agree with Taussig, Rapp, and Heath and suggest that, with regard to the social implications of genomics, “a working knowledge of the political history of eugenics gives us reason for pessimism of the intellect, but an ethnographic perspective on the openness of these practices may give some cause for optimism of the will” (Taussig et al., 2003: 72–73) Taking a broader approach, Andrew Webster links the perceived novelty of genomics within larger social trends, namely, the more “liquid” nature of modern society, with its flexible boundaries and wide range of possible new configurations One effect of such a context is to move away from the idea of “genomics as intrinsically and necessarily transformative allow[ing] us to turn our attention to the ways in which genomics research is or could be articulated in society to close off or open up ‘possibilities’ ” (Webster, 2005: 237) What is clear is that much STS scholarship, of whatever kind, maintains a skeptical stance toward scientific claims about genomics, justifying this position with detailed and closely argued empirical studies The expectations raised at the launch of the Human Genome Project have yet to be realized in any significant sense in the clinic, and it is far from certain that the impact of genomics on industry or personal identity will stretch as far as some commentators claim That said, in certain of the domains outlined above, particularly those relating to the production of new scientific knowledge, genomics has proved to be transformational Perhaps what we need now is an 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“Functional Genomics: It’s All How You Read It,” Science 278: 601–2 Hilgartner, Stephan (1995) “Biomolecular Databases: New Communication Regimes for Biology?” Science Communication 17(2): 240–63 Hilgartner, Stephan (1997) “Access to Data and Intellectual Property: Scientific Exchange in Genome Research,” in National Academy of Sciences, Intellectual Property and Research Tools in Molecular Biology: Report of a Workshop (Washington, D.C.: National Academy Press): 28–39 880 Margaret Lock issues Human corpses, and body parts procured from the living and the dead, have had value as trophies of war, religious relics, anatomical specimens, and therapeutic materials and medicinals for many hundreds of years In Europe, the commodification of human bodies for medical purposes was more often than not associated with violence Vivisection of humans and animals by Herophilus in fourth century BCE Alexandria earned him a lasting reputation as the “father of scientific anatomy” (Potter, 1976) Anatomists performed public dissections of the corpses of criminals and vagrants in church precincts in thirteenth century Italy (Park, 1994), and such dissections continued until the early nineteenth century in civic anatomy theaters built in many parts of Europe, ensuring that the bodies of individuals on the margins of society accrued enormous medical value Richardson argues that in Europe, by the seventeenth century, the human corpse was bought and sold like any other commodity (Richardson, 1988; see also Linebaugh, 1975) The Anatomy Act, designed to prohibit the sale of dead bodies in the United Kingdom, was signed in 1831 and remains the foundation for modern law in that country However, workhouses and other institutions that housed the poor, including hospitals, were defined as “lawfully in possession of the dead.” These institutions could legally confiscate bodies when no claimant came forward or when no money was available to pay for a funeral (Richardson, 1996: 73; Lacqueur, 1983) In the interests of medicine, then, the poor were effectively defined as socially dead, their commodified bodies not due the respect given to the rest of society Only at the end of the nineteenth century did public outcry against such practices bring them to a halt Only after medical men succeeded in conceptualizing corpses as biological objects, as wholly part of nature, and therefore without cultural baggage, did it become relatively easy to strip all bodies—not just those of the “socially dead”—of social, moral, and religious worth Commodification for the benefit of scientific advancement then became both legal and laudable (Mantel, 1998) However, as Richardson (1988) has shown, for families, the bodies of deceased relatives were not so easily divested of social meanings Clearly, the commodification of human biologicals is not simply a feature of the globalized economy of modernity However, because the necessary technologies of procurement and preservation were lacking, human tissues and organs (except for blood) could not be routinely incorporated into systems of exchange prior to the second half of the twentieth century Certain of these technological limitations remain: it is not yet possible, for example, routinely to store unfertilized human eggs, and although techniques have improved for preservation of solid organs outside the human body, they remain of use for transplantation only for a limited time Recent advances in biomedical technologies, and the consequent proliferation of machine/human hybrids make it impossible to sustain the fiction of a radical dichotomy between the human and material worlds (a fiction clearly identified long ago by Marx) While the dichotomy, with its accompanying objectification, served to justify commodification, the present blurring of the “natural” boundaries of self and other inevitably raises moral issues Biomedical Technologies, Cultural Horizons, and Contested Boundaries 881 Legitimization of biomedical technologies is accompanied by rhetoric about their value: the assumption that they contribute to scientific progress and fulfill human “needs.” As Strathern (1992) has noted, however, opposition that accompanies the introduction of so many of the new biomedical technologies makes it clear that they are frequently assumed to be a threat to moral order Legal regulations and guidelines for professional conduct in research laboratories and the clinic are meant to justify such practices and damp down anxiety On the other hand, citizens of democratic societies often assume that they have a “right” to the full range of biomedical technologies, and some individuals, concerned more with personal “empowerment” and their own health than with civic virtue, lobby for unhampered access to technologies such as genetic testing, genetic engineering, reproductive technologies, organ transplants, and so on These contradictions tend to be only provisionally resolved because, as the technologies are modified, the practices they make possible inevitably change Another problematic issue associated with human biologicals, as Linebaugh (1975) intimates, is that of individual ownership of physical bodies and body parts For example, thirty years ago a new death—brain death—was created in order that organs could be procured from patients whose brains have irreversibly lost all integrated function but whose hearts and lungs continue to “live” with the assistance of artificial ventilators Although both a good number of involved families and some health care professionals who work in intensive care units remain ambivalent about the status of brain-dead patients, this new definition of death permitted the majority of those countries with the necessary technologies to conceptualize and legally establish these “living cadavers” as dead enough to become organ donors (Lock, 2002a,b) Even so, a strong resistance remains to the sale of solid human organs procured from cadavers; organs must be gifted Property rights in almost all European countries and in North America are invested in living individuals, following John Locke, who argued forcefully that every man is the “proprietor of his own person” (see de Witte and ten Have, 1997, on the body as property) Capitalizing on the dead raises a dilemma for property law Moreover, the vision of families selling parts of their relatives even as they die appears ghoulish to most of us As noted above, in all countries where organ transplants are routinized, an elaborate network has been set up to monitor procurement and distribution of organs, not only for quality but also for fair play These networks depend on organs that are freely donated by family members without expectation of any recompense other than gratitude Even in those European countries where the State has the legal authority to take organs regardless of the wishes of deceased individuals and their families, organs are not taken without family cooperation, although clearly the expectation is that families should be willing to give Similarly, solid organs procured from living donors must also be “gifted” (in contrast to renewable human biologicals or those believed to be surplus to requirements, e.g., blood, sperm, and eggs) As has been clearly demonstrated in countries where organ sales routinely take place (Cohen, 2002; Scheper-Hughes, 2002), a market model makes individuals vulnerable to exploitation This is the case, even when, as in Iran, the government has attempted to set up a 882 Margaret Lock regulated market (Zargooshi, 2001) Lesley Sharp (2006) argues that the activities of the transplant world are responsible for the current situation, in which the human body may be worth more than $230,000 on the open market Not surprisingly, the value of specific body parts depends on geographical location A kidney can be purchased for about $250 to $30,000 depending on where it is sold (Scheper-Hughes, 2003; Zargooshi, 2001) When it comes to genetic material, the assumption is that individuals relinquish their rights of ownership the moment these materials are removed from their body For example, drug companies in a search of unusual DNA sequences in human populations send out forays to isolated regions to undertake “gene prospecting.” The stakes are high because the hope (unfulfilled thus far) is to produce new vaccines and medications from what are assumed to be rare DNA samples The greatest furor in connection with this “biopiracy” has to do with patenting of DNA sequences procured in this way Unless negotiations are carefully carried out ahead of time, individuals lose all control over the uses to which their body materials are put and are excluded from any resultant profits (Everett, 2003; Lock, 2002a) The technological processing of DNA into immortalized cell lines results in a hybrid simultaneously naturally and culturally produced This hybrid status permits patent claims on DNA sequences because cell lines can be classed as inventions (Strathern, 1996) Moreover, some are convinced that if human organs and tissue are taken with informed consent, then the donor relinquishes all rights of control—the individual no longer has an “interest” in his or her body parts The fact that the material is procured from the human body means, however, that the door remains ajar for dissent The case of John Moore’s spleen is perhaps the best-known example of contestation about ownership of body parts potentially valuable to bioscientists (Boyle, 1996) In the case of organ donation, except when donor and recipient are close relatives, donors may not “direct” who will be the recipient of their organ; their rights to do so are forfeited at the time of donation It is worth noting that much of what goes on in connection with the practice of biomedical technologies takes place away from the public domain—in laboratories, clinics, committee meetings, and computer networking centers When commenting on the application of technologies, social scientists frequently highlight the “unintended consequences” resulting from the introduction of new technologies (Winner, 1986) These possible outcomes are often dismissed by involved scientists, expert committees, and governments as irrational fears on the part of the public (Grove-White, 2006) Following adoption of the Nuremburg Code after World War II, regulation and institutionalized checks of the management of human subjects and care of patients have been applied with increasing vigor in Europe, North America, and Australasia In these countries, at least, it is now difficult to “externalize” or dismiss as irrelevant unintended consequences for patients by appealing to the greater good Similar care is not extended to organ donors because they are not recognized by the transplant world as patients (though gradually it is becoming clear that the health of kidney donors may at times be put in jeopardy [Crowley-Matoka & Switzer, 2005]) In the so- Biomedical Technologies, Cultural Horizons, and Contested Boundaries 883 called developing world, fewer “restrictions” are in place Drug trials that would not be acceptable to review boards in North America and Europe are common, as is the dumping of unwanted (Petryna, 2006), out-of-date medications and the procurement of organs without appropriate clinical care (Scheper-Hughes, 2003) In these countries, negative consequences, unintended or otherwise, are common Their citizens find themselves in a position similar to that of disenfranchised individuals who in early modern Europe were classed as “beyond the pale” and whose bodies were made into targets for medical purposes A SHORTAGE OF ORGANS The idea of organ transplants, a pervasive fantasy from mythological times, became a viable possibility only after Alexis Carrol, the 1913 Nobel Prize winner for medicine, showed that cells and tissues could not only be kept in suspended animation but could be made to function and reproduce independently of the donor body (Hendrick, 1913) Despite a considerable amount of experimentation, attempts at allografts (transplants from one individual to another) or xenografts (cross-species transplants) were failures until the 1950s The first successful kidney transplant was carried out between identical twins in 1954 Extensive animal experimentation and transplantation between identical twins (isografts) increased knowledge about the immune system and led to the recognition of the importance of long-term immunosuppression of the recipient’s body However, throughout the 1960s immunosuppressant use had mixed success, and only after the development of cyclosporine in 1978 was organ transplant technology widely routinized Throughout this time many philosophical and ethical issues were also raised about transplantation In both Paris and Boston, where transplant technology was most strongly promoted, it was argued that organ transplants “transcended the laws of nature” (Kuss, cited in Tilney, 2003: 48) and desecrated the human body In Europe and North America, the practice of transplant technology is entirely dependent on voluntary donations Human organs have from the outset been thought of as scarce commodities A metaphor of a “shortage” of organs, firmly embedded in transplant discourse, is so powerful that it affects both the market value of human body parts and the globalization of the enterprise Indeed, the claim today is often made that there is a growing shortage of organs on the assumption that donation rates have fallen There is no doubt that waiting lists for organs, especially kidneys, are long and growing; however, several obvious reasons account for this state of affairs First, there are fewer car accidents today than 20 years ago Second, trauma units are more effective at preventing patients with traumatized brains from becoming brain-dead Third, populations in technologically advanced societies are aging rapidly These changes mean that the potential donor pool has decreased considerably over the past two decades On the recipient side of the equation, the demand for organs has increased because the population is aging and, owing to complications associated with increasing rates 884 Margaret Lock of diabetes and hepatitis C among younger people, there are more cases of end-stage kidney and liver disease These diseases are intimately associated with poverty, alienation, and social inequality and are first and foremost public health problems Finding sufficient organs to deal with a burgeoning problem of this magnitude is neither appropriate nor feasible The perception of an increasing shortage of organs is exacerbated by an exponential increase in the number of patients deemed eligible to become recipients As a result of changing public expectations and decisions made by committees constituted by transplant communities, transplants are to be available for tiny infants, individuals over 80, and patients with co-morbidities Furthermore, second or third transplants are routinely carried out when earlier ones fail In other words, the transplant world has broadened its sights and increased the “need” at a time when there are fewer potential donors This discrepancy goes virtually unnoticed in official discourse Given the assumption of a shortage, the frequent discussions on how to increase the supply of organs tend to focus on inducing families to cooperate more willingly with donation of the organs of their brain-dead relatives In North America, for example, it is estimated that fewer than 50 percent of possible organ procurements from brain-dead patients whose donor cards are signed are actually accomplished because families do not agree to donation (Siminoff & Chillag, 1999) Even though their consent is not legally required, organ procurement facilitators will not override family sentiment Joralemon (1995) regards this as evidence of a “cultural rejection” of the transplant enterprise One result of the growing “need” for organs is that, whereas until recently organs were primarily procured from brain-dead donors, in the United States, as of 2001, more than 50 percent of organs are acquired from living donors Four assumptions run through the debates about an organ shortage First, organs go to waste if not donated, and every citizen should be willing to contribute to their use in the transplant enterprise Second, organs are regarded as simply mechanical entities void of any symbolic or affective meaning or value Third, diagnosis of brain death is seen as straightforward and acceptable as human death by everyone involved Moreover, families should be willing to interrupt the grieving process for up to 24 hours while organs are procured Finally, it is assumed that donation, being eminently worthwhile, is likely to assist families in the mourning process THE SOCIAL LIFE OF HUMAN ORGANS Before organs can be removed from donors and prepared as living substitutes, they must be tacitly recognized as fungible, and cadaver donors must be designated as dead Agreement that the body will not be violated through organ removal is easier when organs are seen as objects However, because organs procured for transplant must remain biologically alive, even the involved physicians cannot fully reduce them to mere things (Lock, 2002b)—organs retain a hybrid status Mixed metaphors associated with human organs encourage confusion about their worth The language of medicine insists that human body parts are material entities, Biomedical Technologies, Cultural Horizons, and Contested Boundaries 885 devoid entirely of identity, whether located in donors or recipients However, to promote donation, organs are endowed with a life force that can be gifted, and donor families are not discouraged from the belief that their relatives “live on” in the bodies of recipients or even that they are “reborn” (Sharp, in press) Organ donation is commonly understood as creating meaning out of senseless, accidental deaths—a technological path to transcendence Research has also shown that owing to the enforced anonymity that surrounds donated organs, large numbers of recipients experience a frustrated sense of obligation about the need to repay the family of the donor for the extraordinary act of benevolence that has brought them back from the brink of death (Fox & Swazey, 1978, 1992; Simmons et al., 1987; Sharp, 1995) The “tyranny of the gift” is well documented in the transplant world (Fox, 1978: 1168), but people also desire to know something about the donor because donated organs very often represent more than mere biological body parts They are experienced by recipients as personified with an agency that manifests itself in some surprising ways and profoundly influences the recipient’s sense of self A good number of organ recipients worry about the gender, ethnicity, skin color, personality, and social status of their donors, and many experience a radically changed mode of being-in-the-world thanks to the power and vitality diffusing from the organ they have received Sharp (1995) points out that receiving an organ is a personally transformative experience, influencing recipients’ assessment of their social worth She argues that this transformation takes place both subjectively, when a recipient’s sense of self is extended to include qualities attributed to the donor, and through interactions with family, communities, and the medical profession Sharp notes, as does Hogle (1995, 1999), that the language used in connection with organ procurement depersonalizes bodies and body parts but that many recipients re-personalize organs through narratives about their rebirth The organ takes on a biography of its own, independent of the person in whom it resides (see also Crowley-Matoka, 2001; Lock, 2002b) Fetishism is doubly at work: the fetishism of objectification, postulated by Marx, and the fetishism in which gifts (including human body parts), having entered a system of exchange, remain infused with a personal essence, as described by Marcel Mauss Contradictions are rife: if recipients attribute animistic qualities to this “lifesaving” transplanted organ, they are severely reprimanded (Sharp, 1995) As Nicholas Thomas (1991) suggests with respect to commodified objects in general, human organs are “promiscuous”—at once things-in-themselves and diffused with a life force and an agency that is manifestly social Thomas’s description applies equally to genetic material, though its promiscuity is performed in remarkably different ways depending on geographical context and local cultural and political horizons TWICE DEAD, TWICE BORN The linked networks of organ donation, procurement, and transplantation can be blocked or facilitated in a variety of ways in different locations Difficulties are often 886 Margaret Lock not a result of a lack of technical expertise but of cultural and political considerations For example, several countries, among them Sweden, Germany, Denmark, Japan, and Israel, have, since the late 1960s, conducted protracted public discussions as to whether or not brain death—a condition that cannot exist unless body function is sustained by means of a ventilator—can be legally recognized as the end of human life (Rix, 1999; Schöne-Seifert, 1999) In Japan, the debate among lawyers, medical professionals, intellectuals, and members of the public in professional forums and the media has far outstripped discussions about abortion or any other bioethical matter Results of the numerous national opinion polls make the lack of consensus clear The 1997 Japanese law places medical interests second to family concerns and recognizes brain death as the end of human life only when the diagnosed patient and his or her family have given prior notice of a willingness to donate organs As of 2005, organs had been procured from fewer than forty brain-dead donors Numerous factors have contributed to this impasse including a lack of trust in the medical profession, a conservative legal profession, extensive media criticism of hospital practices, and the mobilization of citizen groups to block the formal recognition of brain death as the end of human life Equally important are culturally informed practices in connection with death, notably, the centrality of the family in making end-of-life decisions (Long, 2003), a reluctance on the part of many people to permit commodification of dead bodies, a strong resistance to “gifting” body parts, and fears that a brain-dead body is murdered when taken off the ventilator Religious organizations have not been outspoken in these debates (Hardacre, 1994); rather, reservations arise from what many Japanese assume to be rational, common sense responses to an extraordinary technology that threatens moral order Of course, by no means do all Japanese respond in the same way (Lock, 2002a,b) Hogle (1999) shows how disputes in Germany about the commodification of human body parts and their use as therapeutic tools are powerfully influenced by the history of National Socialism experimentation and its practices of eugenics Reluctance to cooperate with the transplant enterprise is also rooted in medieval beliefs about the diffusion of the essence of life throughout the entire human body Although the ideas of “solidarity” (a powerful metaphor from the former East Germany) and Christian “charity” are both used to encourage organ donation, making organ donation into a social good in multicultural Germany remains fraught with difficulties (Hogle, 1999: 192) In Mexico, as in Japan, virtually all organ transplants are “living related” donations between close relatives A common nationalist sentiment, shared by many political leaders, is that procurement of organs from brain-dead bodies is an inhumane activity in which only a country such as the United States could participate On the basis of extensive fieldwork, Crowley-Matoka (in press) argues that in Mexico, the family, as the core of social and moral life, is regarded as both a “national” and a “natural” resource for organs Above all, it is mothers who are expected to donate, partly because of their prime role as nurturers, and partly because their bodies are seen as more expendable than those of working men Donation patterns “fit” with the brutal reality Biomedical Technologies, Cultural Horizons, and Contested Boundaries 887 of an impoverished life and the accepted division of labor in Mexican households Among recipients Crowley-Matoka finds evidence of concerns among men about sexual potency, of being like a gelding or a half-woman Lesley Sharp (2006), in her ethnographic account of donation, procurement, and transplantation of organs in the United States, shows clearly that the origins of organs for transplant are deliberately dehumanized and sanitized Nevertheless, numerous donor kin cannot accept the biomedical trajectory of a technologically diagnosable material death In the course of many years of studying the U.S transplant enterprise, Sharp has observed how social relationships between donors and recipients have been transformed Initially, such relations were based entirely on imagination, owing to enforced anonymity; more recently, they became something that can be celebrated in the public sphere It is common today to build edifices as donor memorials and to hold public gatherings in which donors and recipients come together to celebrate donor’s lives The leitmotiv of such gatherings is one of loss and redemption and of birth and rebirth Speakers are organ recipients who often know exactly who was their donor (Sharp, 1995; see also Lock, 2002b) Metaphors derived from Christianity are drawn on liberally, and testimonies are delivered in a manner similar to that used in Pentecostal churches, although organ recipients are not necessarily believers The problems associated with body commodification and biomedical technologies become overtly political in countries where an enormous disparity exists between rich and poor Cohen (2002), Das (2000), and Scheper-Hughes (1998) have shown how the disenfranchised are particularly vulnerable to exploitation By tracing complex networks of activities associated with organ procurement and their transplantation involving organ brokers, unscrupulous doctors, and at times the unwilling participation of live kidney donors, these researchers make it clear that societal inequities are reproduced and even magnified through the practices of transplant technology On the basis of research in India, Das (2000) is critical of both contract law and globally applied bioethics grounded in the language of rights She argues that such language masks the politics of violence and suffering involved in organ procurement where gross inequalities are present in social life and where bribery and corruption are not uncommon On the other hand, Crowley-Matoka (2001) shows that in Mexico poor people often become organ recipients and that economic assistance from Mexicans living in America, and at times their organ donations, enrich the bonds between immigrants and their relatives at home Because organ recipients, wherever they reside, are, in effect, permanently invalided, many organ recipients and some donors can no longer provide for their families; some experience discrimination when looking for jobs or when dealing with insurance companies; those who are single may have trouble finding partners; and for women, the risk of child-bearing is increased However, among those recipients who have few problems with organ rejection, many feel young again or even reborn The impact of transplant technologies on the everyday lives of people directly involved with this enterprise is context dependent Such technologies force reconsideration of unexamined assumptions about the basic social contract, of what counts as 888 Margaret Lock self and other, and of the accepted boundaries between nature and culture The discussion provoked by this technology can thus act as a touchstone for political debates about nationalism, modernization, progress, equity, whose lives are valuable and whose can be sacrificed, what counts as death, and more generally about the commodification of the human body and the possibility for creating new social relationships as a result of the breaching of body boundaries involved in transplantation LAISSEZ-FAIRE EUGENICS From its outset in the 1960s, the institutionalization of genetic screening of specific high-risk populations, followed two decades later by the implementation of genetic testing of pregnant women, was made difficult by the historical links between the world of clinical genetics and that of eugenics (Duster, 1990) The guiding principle of the eugenics movement of the first half of the twentieth century was a belief that the elimination of “poor” genes could be justified for the good of society at large (Kevles, 1985; Kitcher, 1996).The only method available to dispose of such genes was to enact policies by means of which the reproductive lives of individuals designated as genetically unworthy and as a burden to society were managed by medical and governmental representatives Today, a different rhetoric informs interventions that may result in the termination of pregnancy Individual choice is presented as dominant, and the role of government is rendered invisible Decisions about termination of a pregnancy on the basis of genetic test results inevitably involve moral choices, not simply about the act of abortion per se but also about what counts as normal and abnormal The grounds on which such decisions are made, however, are relatively rarely explicitly examined (Duster, 1990; Lock, 2002c), and such practices have been characterized by some as a “neo-eugenics” (Kitcher, 1996) Over 20 years ago, the historian of science Edward Yoxen (1982) pointed out that although the role of genetics in disease etiology was recognized throughout the twentieth century, it was only after the advent of molecular genetics that the notion of “genetic disease” came to dominate this discourse, often obscuring the role of other contributory factors Keller (1992) argues that this conceptual shift made the Human Genome Project both reasonable and desirable for scientists The objective of mapping the human genome was to create a baseline norm, which in fact would not correspond to the genome of any single individual In theory, everyone is deviant (Lewontin, 1992) Moreover, many involved scientists believed that it would soon be possible to “guarantee all human beings an individual and natural right, the right to health” (Keller, 1992: 295) A 1988 report published by the U.S Office of Technology Assessment argued that genetic information will be used “to ensure that each individual has at least a modicum of normal genes,” justified by the belief that “individuals have a paramount right to be born with a normal, adequate hereditary endowment.” The planned use of genetic information in this way is described in the report as a “eugenics of normalcy” (Office of Technology Assessment, 1988; cited by Keller, 1992) Biomedical Technologies, Cultural Horizons, and Contested Boundaries 889 Although documents such as these mention the improvement of the quality of the human gene pool, they do not focus on social policy or the good of the species A belief in individual choice is dominant, and it is assumed that genetic information is indispensable to realize the individual’s inalienable right to health Virtually everyone agrees that the eugenics of the first part of the twentieth century was grounded in invalid science, and its practices are roundly criticized However, the social cost of treating and caring for “defective” children is still made explicit when justifying the implementation of screening programs For example, the State of California introduced maternal serum α-fetoprotein screening for all pregnant women in the early 1990s in the hope of reducing the number of infants born with neural tube defects and thereby saving costs (Caplan, 1993) In 1990 the guidelines of the International Huntington Association advocated refusing to test women who were unwilling to provide assurance that they would terminate their pregnancy if the Huntington gene were found As Paul and Spencer (1995: 304) point out, “Those who made this recommendation certainly did not think they were promoting eugenics Assuming that eugenics is dead is one way to dispose of deep social, political and ethical questions But it may not be the best one.” Similarly, Ginsburg and Rapp (1995) argue that biological and social reproduction are inevitably bound up with the production of culture Rapp’s (1999) ethnographic study of amniocentesis, a technology used primarily to detect Down syndrome and single-gene disorders, shows how, despite a policy of nondirective counseling, American genetic counselors tailor the way in which they convey test results to their clients’ ethnicity Often inadvertently, these counselors encourage the persistence of “stratified reproduction” in which “some categories of people are empowered to nurture and reproduce, while others are disempowered” (Ginsburg & Rapp, 1995: 3) Rapp’s ethnography also makes clear that, when confronted with this type of testing, many women, especially those who are neither white nor middle class, become noncooperative and frequently reinterpret or resist the risk information they are given Ambivalence and resistance are common responses to genetic testing in general: it is estimated that only between 15 and 20 percent of people considered at risk for adultonset genetic disease have made use of testing (Quaid & Morris, 1993; Beeson & Doksum, 2001), and pregnant women have actively refused to be tested (Rapp, 1998) or ignore test results (Hill, 1994; Rapp, 1999) Even though extreme caution would seem in order, we forge ahead rapidly with the routinization of genetic testing and screening on the assumption that people will be able to make rational choices about abortion and about suitable, genetically compatible marriage partners and thus avoid bringing diseased children into the world (Beeson & Doksum, 2001) There is no doubt that some programs—notably screening for sickle cell trait in the United States and elsewhere (Duster, 1990)—are associated with a long history of racism and discrimination In contrast, screening for thalassemia and Tay-Sachs disease has brought enormous relief to certain families (Angastiniotis et al., 1986; Kuliev, 1986; Mitchell et al., 1996), and the Cuban government reports success with a screening program for sickle cell disease (Granda et al., 1991) 890 Margaret Lock Program success is measured in terms of reduction in the incidence of the disease in question This is usually achieved by means of genetic testing of teenagers deemed to be at risk who are at liberty to draw on these results later when making decisions about marriage, reproduction, and, when necessary, abortion In Montréal, more than 25 years of screening for thalassemia and Tay-Sachs disease have led to an almost 100 percent reduction in incidence The majority of involved families state that without such a program they would not have had children at all for fear of the disease and that they are now at ease in the knowledge that their offspring will be spared great suffering (Mitchell et al., 1996) Willis (1998) points out that abortion politics and vocal “right to life” campaigners might affect the implementation and spread of screening technologies Disability rights activists are also critical of testing because “a single trait stands in for the whole (potential) person Knowledge of the trait is enough to warrant the abortion of an otherwise wanted fetus” (Parens & Asch, 1999: S2) GENETICIZATION, GENETIC RESPONSIBILITY, AND GENETIC CITIZENSHIP In 1992, Abby Lippman coined the term geneticization to capture an ever-growing tendency to distinguish people on the basis of their genetic makeup She was concerned above all with possible reinforcement of racism, inequalities, and discrimination of various kinds as a result of a renewed conflation of social realities and biological difference (Lippman, 1998: 64) More recently, Adam Hedgecoe (2001) used a concept of “enlightened geneticization” to show how current scientific discourse about schizophrenia prioritizes genetic explanations and subtly diverts attention away from nongenetic factors even while paying lip service to the contribution of environmental and other nongenetic factors to disease causation (see also Spallone, 1998) Although Hedgecoe agrees with Lippman that genetic determinism is at work, he points out that geneticization, and medicalization more generally (see Lock & Kaufert, 1998; Lock, Lloyd, & Prest, 2006) also have some positive effects For example, medical recognition of a given condition as a disease reduces social stigma and allocation of responsibility to the individual and family (McGuffin et al., 2001) Moreover, many families appear to take comfort in being told that a disabling condition is the result of faulty genetics and therefore, by implication, has nothing to do with moral shortcomings (Turney & Turner, 2000) Social scientists have also studied responses of individuals and families directly affected by the new technologies of genetic testing and screening Rayna Rapp and colleagues document how networks of families claim “genetic citizenship” and increasingly coalesce around lethal and highly disabling single-gene diseases that afflict their children Such groups provide mutual social support and lobby the U.S Congress for improved research funding; similar activities happen in other countries (Callon & Rabeharisoa, 2004) These activists are painfully aware that only rarely will drug companies invest in research for the rare diseases that affect their families (Rapp, 2003) Biomedical Technologies, Cultural Horizons, and Contested Boundaries 891 Edward Yoxen (1982) suggested long ago that our new abilities to detect “presymptomatically ill” individuals would ensure that virtually all of us would shortly become subject to increased medical surveillance More recently, Paul Rabinow (1996) created the concept of biosociality to describe the constitution of new group identities based on shared alleles Nikolas Rose (1993) has outlined the emergence of a new form of governance in which individuals are expected to exhibit prudence with respect to embodied risk, and Novas and Rose (2000) have examined what it means to be designated as “genetically at risk.” KINSHIP AND EMBODIED RISK The introduction of molecular genetics to clinics and public health screening programs has profoundly affected individual behavior and family dynamics (Kerr et al., 1998; Michie et al., 1995; Hallowell, 1999; Konrad, 2005) At the same time, individuals interpret available knowledge about molecular genetics to “fit” their preconceived ideas about family risk for specific diseases People also frequently resist using the results of genetic testing alone to account for the illnesses that “run” in their families (Condit, 1999; Lock, Freeman, Sharples, & Lloyd, 2006) When genetic information is actively incorporated into accounts about illness causation, such information supplements previously held notions of kinship, heredity, and health Cox and McKellin (1999: 140) have demonstrated that lived experience of genetic risk and lay understandings of heredity conflict with theories of Mendelian genetics because “theories of Mendelian inheritance frame risk in static, objective terms They abstract risk from the messiness of human contingency and biography.” Kerr and colleagues (1998) write that lay persons are their own authority when it comes to appreciating and understanding how genetics may shape their lives These findings suggest that the new forms of community that Rabinow has envisioned under the rubric of “biosociality” are by no means self-evident The technologies of genetic testing and screening have the power to reveal embodied risk, but to date the majority of people refuse such information, choosing not to divine the future Many individuals are sensitive to the way in which knowledge about DNA inevitably transcends body boundaries and has immediate significance for families and, at times, communities; they worry about the effects of testing on the family as a whole (Gibbon, 2002) This type of information challenges the foundations of contemporary bioethics grounded in the idea of the autonomy of individuals (Hayes, 1992) Perhaps of more importance, it has the potential to cause both ruptures and alliances among kin, creating “unnatural” molecular boundaries of inclusion and exclusion (Gibbon, 2002) In her study of Huntington’s disease, Monica Konrad (2005) has recently examined how diagnostic tools in clinical genetics are creating “pre-symptomatic persons as new social identities.” Konrad’s ethnography shows how knowledge gained from genetic testing is situated among “moral systems of foreknowledge” held by involved families She argues that “culture” is put to work in dealing with the paradox of testing for genes that provide a prognosis about a disease for which there is no cure Konrad 892 Margaret Lock points out, as do I and my colleagues in our research on Alzheimer’s disease (Lock, Freeman, & Lloyd, 2006), that families draw on the concept of “blended inheritance” (Richards, 1996) to prophesy who among them will become ill While genetic testing enhances predictability, it is far from obvious how people will respond to test results, negative or positive In the case of Huntington’s disease, for example, certain people whose test results were negative have committed suicide, ostensibly because of guilt at having escaped the family disease (Almqvist et al., 1999, 2003; Quaid & Wesson, 1995) Genetic test results are rarely associated with certainty Even the autosomal dominant gene associated with Huntington’s disease is not 100 percent penetrant so that not quite everyone with the gene will get the disease (McNeil et al., 1997) Moreover, as with many similar diseases, the age of onset is variable and cannot be predicted with accuracy After the Huntington gene was mapped, many of the risk estimates formerly given to people were found to be inaccurate, with disturbing social repercussions in several cases (Almqvist et al., 1997) Women in particular come to think of themselves as responsible for circumventing their family risk by undergoing genetic testing and planning reproduction accordingly Genetic discourse constructs women as the “bearers of ‘nature’s defects’” (Steinberg, 1996) Referring to genetic testing for breast and ovarian cancer, Hallowell (1999) suggests that by constructing genetic risk and risk management as moral issues, women relinquish their right not to know about their own genetic risk Kenen (1999) also argues that genetic testing has the potential to fundamentally alter the way in which we think of ourselves in relation to others, making visible an “interdependent self.” Genetic testing for complex disease is becoming increasingly common, notably in the private sector where people who pay to be tested are usually simply informed about the presence or absence of a particular polymorphism in their genome and given little or no information about the statistical probabilities for disease incidence associated with it Furthermore, developments in postgenomic science, notably in connection with epigenetics, are making it abundantly clear that not only is scientific knowledge about the genomics of complex disease in a primitive state, but inevitably calculations of risk are exceedingly problematic (Lock, 2005) Susceptibility genes for complex disease are for the most part neither necessary nor sufficient to cause the disease in question One study strongly suggests that first-degree relatives of Alzheimer patients who are tested for the susceptibility gene most commonly associated with this disease do not undergo any fundamental reconceptualization of embodiment or subjectivity as a result of testing There are at least four likely explanations for this situation: the disease has late onset; relative risk estimates given to those individuals believed to be at the highest risk (based on sex, genotype, and number of affected family members) are just over 50 percent by age 85; many people living in Alzheimer families already understand themselves as profoundly affected by this disease independently of genotyping, and such families almost without exception believe that nongenetic factors may be amenable to modification, whereas genes are not (Lock, Biomedical Technologies, Cultural Horizons, and Contested Boundaries 893 Freeman, & Lloyd, 2006) Further research will show whether social scientists have inadvertently participated in a genetic hype that assumes significant changes in embodiment based on knowledge about a person’s genotype In this respect, the impact of being an organ recipient may well be significantly different from that associated with genetic testing and screening CONCLUSIONS It is clear that much remains to be learned For example, we have next to no data on subjective transformations experienced by those transplant recipients who buy organs illegally Nor do data exist about how identity is affected over the long term in families in which one or more individuals has undergone genetic testing What findings we have about non-Mendelian, complex diseases suggest that disembodied, abstracted knowledge about molecularized identities does not appear to have the leverage to replace identification based on “blood” and heredity, although information about genes associated with breast cancer may be an exception Space has not permitted more than minimal elaboration on the ethnographic findings described throughout this chapter The ethnographic approach allows us to avoid both reductionism and essentialism and provides a powerful tool for examining how biomedical technologies are co-constructed with the material Ethnography also lays bare cultural and sociopolitical constraints on practices associated with the use of these technologies and shows that limiting attention to individuals—whether they are characterized as users, consumers, or responsible citizens—privileges the bounded, autonomous body of modernity The practices of transplant technology and of genetic testing and screening make it abundantly clear that researchers have no choice but to recognize the ubiquitous presence of hybrid, postmodern bodies, fluid subjectivities, and shifting human collectivities, which in turn are associated with the potential for new forms of embodiment and identity Documenting the profound social effects of these technologies anchors a reflexive, critical analysis of biomedical technologies in action, both globally and locally Note 1 Gaston Bachelard (1964) The Poetics 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CREATION OF NEW GENOMIC IDENTITIES One of the most influential recent strands of argument in the field of the social studies of the life sciences concerns ideas of biosociality (Rabinow, 1996a) and. .. well as the practices and procedures associated with them Yet there are conceptualizations of users, of the nature of illness and susceptibility, and of the relations among technologies and the body... management of uncertainty in genetic testing services in the Netherlands and the United Kingdom, where she argued that the construction of expectations and the management of the future are shaped by the