The Handbook of Science and Technology Studies Part 13 ppt

If we view the “deficit model” of PUS as con-structing typical expectations about how people will react toward genomics, then,given STS’s historical role in challenging this model and th

of that competition (cashed out in terms of patents and testing licenses) both forpatients, 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 ofthe BRCA1 and 2 genes and breast cancer is to be seen as encapsulating expectationsconcerning genetic testing for complex diseases, then as in cystic fibrosis, STS teachescaution about simplistic assumptions regarding the delivery of such testing A relatedpoint is made by Nelis (2000) in a comparative study of the management of uncer-tainty in genetic testing services in the Netherlands and the United Kingdom, whereshe argued that the construction of expectations and the management of the futureare shaped by the structure of the local networks.

In focusing on specific technologies (rather than conditions), research has revealedjust 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) Partlythis 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 tion has been available for some time, there is still considerable flexibility over how

interven-it is seen in the lab, in the clinic, and by patients (Rapp, 2000) New molecular niques are incorporated into existing clinical practices rather than sweeping themaside in a revolution (Nukaga, 2002) The range of conditions explored in this workand the limitations faced by these technologies when they enter the clinic highlightthe point that very few of the expectations that were used to justify the HGP havebeen realized to date, with almost all the new clinical techniques restricted to estab-lished genetic niches

tech-REPRESENTATION AND CULTURE OF GENOMICS

It is when debates around genomics leave the lab, clinic, or boardroom and enter thebroader culture and public discourse that they become the most overtly political Inthe case of public understanding of science, the expectations about genomics raisedare different from at other sites Rather than there being expectations about scienceand technology, in the case of PUS, the expectations concern people’s reactions andbehavior toward science and technology If we view the “deficit model” of PUS as con-structing typical expectations about how people will react toward genomics, then,given STS’s historical role in challenging this model and the high profile human genet-ics has in public debate, we should not be surprised to see work in this area under-mine and question simplistic beliefs about how the public will respond to genomics.Perhaps the clearest evidence that within STS the transformational approach togenomics can be highly critical of developments in science and technology lies inDorothy 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) Clearlywritten from a position that takes developments in modern genetics as somehow dif-ferent from what has gone before, Nelkin’s work, and that of other scholars like Abby

Lippman (Lippman, 1994, 1998), can be criticized for lack of historical depth andmethodological problems (Condit, 1999, 2004) but not for political urgency and crit-ical drive.

Of course, it is perfectly possible to carry out a historically rooted analysis of thecultural 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’squalitative 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 explorethe different ways in which geneticists (Cunningham-Burley & Kerr, 1999; Kerr et al.,

1997, 1998a) and nonscientists (Kerr et al., 1998b,c) view developments in geneticsand associated ethical issues This rigorous empirical basis has provided a foundationfor a subsequent critique of the way in which some social theorists have engaged withhuman genetics (Kerr & Cunningham-Burley, 2000) and developing concepts aroundthe political life of human genomics (Kerr, 2003a,b,c) A core element of this and otherwork (Barns et al., 2000; Irwin, 2001) is to incorporate nonscientist opinion on genet-ics 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 todivide, with the concerns of professionals (both scientific and non-STS-based socialscientists) being rooted in traditional models of the public and technology, withethical expectations marginalized and simplistic solutions suggested To some extent

it might be seen as a failure that the public culture emphasized through STS for somany years has had such a low profile among practicing scientists, yet whether wetake a transformational or contextual position, the increased presence of genomics inthe press and public discourse seems assured That STS shows how scientists andpolicy-makers who refuse to reorient their expectations in accordance with how thepublic reacts engender resistance and even failure (Robins, 2001) provides an oppor-tunity for work in this area to feed directly into political discussion over how societiesmight respond to new technologies Contextualists might take the opportunity tohighlight the public’s fears of, for example, racialized science (Duster, 2001) while, asthe next section discusses, transformationalists may show how particular groups ofnonexperts adapt and adopt genetic knowledge to serve their own social needs Thepoint is less about whether genomics is transformative of wide cultures and publicsbut rather that this context presents STS scholars working in this area with a uniqueopportunity 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

citizenship While the origins of these ideas may be see as formally lying outside therealm of STS, they have shaped much of the debate on the creation of new genomicidentities.

The initial focus of work in this area arose from studies of new reproductive nologies and the development of genetic testing services for mainly rare monogenicconditions (Rapp, 1998, 2000) Research has recently started to look at more commoncomplex disorders Finkler, drawing on the experience of women who have a heredi-tary risk of breast cancer, argues that the presentation of research findings has led to

tech-a new genetic determinism, the medictech-aliztech-ation of kinship, tech-and chtech-anging idetech-as tech-aboutthe significance and meaning of kinship (Finkler, 2000; Finkler et al., 2003) In par-ticular, she shows how the experience of the new genetics can transform a healthyperson into a patient without symptoms and places increasing emphasis on biologi-cal rather than social determinants of health and illness However, writing from withinthe contextual approach, Kerr has criticized studies of this sort for lacking empiricalevidence and overemphasizing the role of genetics as a consequence of giving toomuch 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 anindividual’s sense of self, Novas and Rose argue that knowledge of genetic risk doesnot generate fatalism but induces new relations to oneself and one’s future, and a newset of obligations and biological responsibilities (Novas & Rose, 2000) This in turn iscreating new individual and collective identities such as those embodied in patientgroups for muscular dystrophy or Huntington’s disease These can challenge ideas ofstigma and exclusion, as well as dominant medical discourses Rabinow has called thiscreation of new subjectivities “biosociality,” as distinct from Foucault’s concept ofbiopower in which life and its mechanisms are calculable and this knowledge is used

to discipline both bodies and populations This perspective is explicitly tive, distancing as it does modern genomics from traditional concerns about eugen-ics This does not mean that there are not ethical issues, of course, simply that theyare of a new kind (Rose, 2001)

transforma-It should be noted that other nonmedical genetic technologies, such as the opment of genetic ancestry testing, are also creating new forms of collective and indi-vidual identity (Tutton, 2004; Nash, 2004) Following on from this, it is argued thatthe emergence of new identities based on ideas of genetic susceptibility and risk, andthe embodied disciplines and representations of rights and responsibilities that arebeing co-constructed through new screening and public health programs, constitute

devel-a new form of biologicdevel-al or genetic citizenship (Rose &devel-amp; Novdevel-as, 2004) Through the fillment of the duties to know and manage genetic risk in order to protect themselvesand their families, individuals are seen as constructing themselves as healthy andresponsible citizens (Petersen, 2002; Polzer et al., 2002) Hovering between these twopositions is work like that of Taussig, Rapp, and Heath, who, in their research on the

ful-“Little People of America” patient group, explore a range of technological tions (such as surgery or genetic testing) using the concept of “flexible eugenics” topoint out the positive and negative options for self-identity that arise from genetic

interven-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 ashelping constitute distinct new forms of identity, subjectivity, and citizenship, theextent to which these transformations are happening outside very tightly definedniches (patient groups for rare genetic diseases) or represent a clear break with the pastremains 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 mentally shaped by earlier work on the ethical, legal, and social issues (ELSIs) raisedduring the controversies surrounding the development of recombinant DNA (rDNA)and biotechnology, and the political response to these concerns With a few notableexceptions (Nelkin & Tancredi, 1980, 1994; Duster, 1990), little of this work was from

funda-an STS perspective, most of it having a largely normative agenda that critiqued thepotential hazards and social problems caused by emerging genetic technologies Therehave also been important national differences between the United States and Euro-pean states in terms of political and institutional responses and also in the type ofscholarship that has been funded in this area Broadly speaking, U.S ELSI research hasbeen dominated by bioethicists and lawyers, while in the United Kingdom social sci-entists 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 tory regimes designed to control early rDNA research and first-generation biotech-nology products were established, and a number of STS scholars have analyzed theircreation 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 Incontrast, significantly less attention has been given to more recent changes in theseregimes brought about by the turn to genomics and the development of new tech-nologies, such as genetic screening and gene therapy In looking at the broad field ofgenomics and postgenomics, Gottweis has argued that “ the science of genomics isintroducing a number of fundamental transformations in the practice of modernbiology 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 offi-cial policy responses, which might ultimately lead to a crisis of confidence in medicalbiotechnology

regula-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 theoverall regime governing human genetics in the United Kingdom In particular, theyhave charted the creation of a complex system of statutory regulatory bodies and

nonstatutory expert advisory committees This system was reconfigured followingwhat was constructed as a major crisis of trust following the public rejection of genet-ically modified food in the late 1990s and has adopted a discourse of open govern-ment, based on the language of public engagement and greater transparency, as alegitimating strategy (Jones & Salter, 2003) In a similar study of the regulation ofhuman genetics at the EU level, Salter and Jones (2002) have shown that similar pres-sures have forced policy-makers to engage with a greater range of stakeholders andpublics, as well as placing more emphasis on the role of expert bioethicists in medi-ating disputes An important recent addition to the literature is Jasanoff’s threecountry 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 nologies, 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 howspecific innovations are co-constructed with regulatory regimes and how they areshaped by local political, cultural, and institutional factors Considerable attention hasbeen paid to exploring the new forms of governance and public engagement that seem

tech-to have become associated with genetics and biotechnology in the United Kingdomover the last decade (Tutton et al., 2005; Kerr, 2004; Purdue, 1999) This research sug-gests that, while important changes have occurred in the way in which the public isconstructed and engaged by policy-makers, established power relations continue to bereproduced Furthermore, the narratives of choice and responsibility that are acommon hallmark of policy discussions in this area are seen to frame the problemsassociated with new genetic technologies in ways that shift attention away frombroader 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 geneticcitizenship, as many questions remain unanswered about how the new rights andresponsibilities of different actors are defined and exercised in practice (Kerr, 2003a)

It therefore appears that while genomics has been associated with some significantchanges 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 experi-ments in public engagement The difficulty in breaking down established divisions ofexpertise and institutional barriers casts doubt over the idea that we are seeing newforms of citizenship emerge

CONCLUSION

Through a review of the STS literature on genomics the aim of this chapter was toanswer 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, and what is believed to be the extent of sociotechnical change? As we mightexpect from a discipline that teaches us to question the apparently straightforward factspresented by science, work on STS forces us to challenge the assumptions that under-pin even such obvious questions To some extent the presence of a strong contextualperspective in STS scholarship, questioning claims about the transformational impact

of genomics, raises doubts not just about the wording of these two questions but aboutthe nature of this chapter itself As STSers, our natural instinct may well be to assumenovelty 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 thehistory of science provide a conduit through which contextual assumptions can flow,challenging the automatic belief that every technological development implies a revo-lution We accept that our own backgrounds mean that the contributions of sociolo-gists are perhaps overemphasized, but we feel that the picture of STS scholarshippainted 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 ent ways of looking at genomics The richness of debate, variety of case studies, andrigor of research in this area stems in part from the existence of these different ways

differ-of seeing the same material Rather, we would like to agree with Taussig, Rapp, andHeath and suggest that, with regard to the social implications of genomics, “a workingknowledge of the political history of eugenics gives us reason for pessimism of theintellect, but an ethnographic perspective on the openness of these practices may givesome cause for optimism of the will” (Taussig et al., 2003: 72–73) Taking a broaderapproach, Andrew Webster links the perceived novelty of genomics within larger socialtrends, namely, the more “liquid” nature of modern society, with its flexible bound-aries 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 mative allow[ing] us to turn our attention to the ways in which genomics research

transfor-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 skepticalstance toward scientific claims about genomics, justifying this position with detailedand closely argued empirical studies The expectations raised at the launch of theHuman 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 iden-tity will stretch as far as some commentators claim That said, in certain of the domainsoutlined above, particularly those relating to the production of new scientific knowl-edge, genomics has proved to be transformational Perhaps what we need now is anunderstanding of why it is that expectations about genomics are being realized insome areas and not in others

Note

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At a recent meeting on nanotechnology, a speaker described the following scenario.

A person opens a pill bottle to take a daily dose of medication In doing so, sors on the container transmit information about the person’s biochemical status tothe primary physician, and an inventory of remaining medication is reported to sup-pliers Health status and other information is then relayed back to the person’s Black-Berry,1stimulating him or her to follow recommendations to purchase goods, changedaily patterns, or if nothing more, be aware of his or her body’s condition on a daily(or more frequent) basis

biosen-Discussions of medical technologies are often freighted with such fantastical futurescenarios, but one need not go that far to see how intimately connected biomedicine

is with other domains of life and labor In fact, it is rare to pick up a newspaper, listen

to workplace conversations, or watch entertainment without some reference tomedical technology in one of its myriad forms Medical technologies permeate allaspects of human experience from birth to death, whether one is healthy, disabled,

or ill In addition to diagnosing disorder and replacing bodily function, medical nologies can compile and disseminate information about bodies, monitor physical andmental states, ameliorate or create new forms of suffering, or make people “better thanwell.” Technological systems and the information they provide also affect family andwork life, regulate individuals and societies using medically derived norms, and par-ticipate in the selection and application of resources to certain groups (and not others).The medical shaping of social identity is thus a significant aspect of medical devices,diagnostic tools, and data dissemination that deserves analysis

tech-The scenario is a good tool for considering what comprises medical technologies andhow tightly connected they have become with other aspects of daily life, commerce,and governance Medical technologies can be defined as the various devices, instru-ments, and therapies used for diagnostic, therapeutic, rehabilitative, preventive, orexperimental purposes as well as the practices and procedures associated with them Yetthere are conceptualizations of users, of the nature of illness and susceptibility, and ofthe relations among technologies and the body that animate emerging technologiesand create certain kinds of connections in interaction with institutional and technicalmeans What sort of medical technological system was this scientist imagining? What

Linda F Hogle

contributions by clinical practitioners, political authorities, insurers, population healthplanners, or industrial developers and suppliers of goods and services might lead to thisparticular assembly of medical-biological, communications, and engineering tech-nologies, and what new knowledge and entities might emerge as a result?

The diversity and extension of technologies into many domains presents a lenge to those who would analyze the field as a set of techniques, knowledge forms,and practices While it is impossible to cover all technologies, uses, historical prece-dents, and contemporary dilemmas, this chapter uses representative work from thesocial and historical study of medicine to illustrate key themes and approaches tostudying medical technologies

chal-The chapter is organized into three parts chal-The first deals with the centrality of nologies in diagnosis, that is, the determination of the nature and cause of disease.Diagnostic and research data from instruments are essential to such determinationsbut are in constant interaction with systems of expertise, theories, and the institutions

tech-in which they exist Rather than passively supplytech-ing tech-information, technologies maychange what constitutes evidence of both the presence of disorder and of the utility

of certain therapeutic approaches Medical technologies, in conjunction with concepts

of disease, can categorize individuals into culturally constructed states of normality orpathology and have become a central part of decision-making about managing healthproblems in certain ways, including prognosis and decisions about which therapies touse Diagnoses can determine treatments (how and where people will or will not betreated) and prognosis (probabilities and what is to be done) For these reasons, STSresearchers have become interested in new forms of subjectivity as technologies affectpeoples’ lives and work in tangible ways

The drive toward ever more specific connections of causal mechanisms to illnessstimulates a desire for more evidence about which interventions work and under whatconditions The second section deals with testing and evaluating emerging technolo-gies, as this is the phase that links the analysis of diagnosis to therapy Testing pro-duces various forms of knowledge Greater volumes of data and specific kinds of proofsare demanded in order to make the link between mechanism, disease, and therapyand to reduce the variability of practices and products thought to create inefficien-cies New products must also be tested to pass regulatory oversight and financialreview, as the state, private payers, and other authorities have a stake in decisionsabout availability and costs of health services The kinds of evidence sought (predic-tive, classificatory, economic) are looped back to pragmatic problems of testing,because the definitions, protocol design, and interpretations of results may framemedical problems in particular ways At the same time, products are reconfiguredthrough early interactions with potential users and those who have something at stake

in the introduction of new technologies or in preventing their use

The final section deals with technological modifications to the body, including apeutic, aesthetic, and life-extending ones While medicine has been thought to beabout repair, restoration, and the alleviation of suffering, other goals (such as longerlife, the elimination of traits perceived to be disabling to individuals and society, the

ther-expression of individuality and for some a search for perfection) are increasinglyinvolved, in some cases aligning technologies with identity politics To see howhumans and technologies constitute each other, a number of works in STS explore theexpectations, categorizations, hopes, and desires embedded in such emerging tech-nologies and the ways they are deployed.

Selected examples of STS work illustrate various approaches to these themes, and adiscussion of recent innovations, in particular, regenerative medicine, will illustrateemerging forms of technological systems that will have broad implications for bio-logical and social life in contemporary global economies Other chapters in thisvolume deal with specific technologies including organ transplantation and genetictests (chapter 34), genetic and reproductive technologies (chapter 32), imaging(chapter 13), and pharmaceuticals (chapter 29), and these topics are only touchedupon here.2

WAYS OF KNOWING: DIAGNOSIS, DISEASE CLASSIFICATION, AND TECHNOLOGIES

In a seminal paper on what he calls the “tyranny of diagnosis,” Charles Rosenbergdraws attention to the pivotal role of diagnosis and the ways it has been reconfigured

as medicine becomes more technical, specialized, and bureaucratized He argues thatagreed-upon disease categories based on assumptions of ontologically real and specificdisease entities have become the core organizing principle in medicine (Rosenberg,2002) The codification of concepts into bureaucratic systems then becomes the way

to control costs, manage deviance, and legitimate certain sick roles (but not others).Ultimately, the resulting taken-for-granted categorizations of patients and disordersstructure clinical and patient practices Integral parts of the way knowledge is pro-duced and standardized are the various instruments, techniques, information, andcommunication systems collectively called medical technologies

Apparatuses can be used to extract information with which to establish a body’s logical and social status, monitor it over time and circumstances, and report the find-ings to various types of experts across widespread networks From this information,large databases can be created with which to define health and illness, reformulatecategories of normal and abnormal, make judgments about individuals and popula-tions, provide predictors of risk, and then plan future services and technologies Inthis way, assumptions about deservedness, capability, and behaviors are built in toboth the technologies and interpretation of data they produce

bio-Diagnosis, broadly understood, has been studied in STS work by a variety ofapproaches The following discussion groups these into historical studies of specifictechnologies; constructivist, actor-network, and assemblage analyses; studies of clas-sification and standardization processes; and emerging forms of subjectivity

Technology Histories

Historians have shown how medical technologies often emerge from their original use

as research tools and how the development of diagnostic instruments was connected

with theories about disease and bodily function (Marks, 1993) In an era of interest inthe mechanical properties of the body, for example, the thermometer was developed

to measure temperature changes and the sphygmomanometer to measure the pressure

of blood flow to test the heart’s pumping efficiency (Porter, 2001) Yet developments

of instruments in turn profoundly affected theories of the body and disease Mostnotably, microscopy changed what was presumed to be true about cells and their struc-ture As optical and histological techniques improved, the enhanced ability to observetissues linked knowledge about anatomy and physiology (Davis, 1981)

Marks (1993) advocates the study of medical technologies by looking at the “lifehistories” of medical machines This approach enables understanding the particularskills and techniques that develop around particular instruments Tracing the role ofpatients and various users in the design and deployment of specific technologiesreveals the multiple origin stories that bear on a technology’s biography Howeverapproached, historical studies are critical to understanding the interplay betweeninstruments, theories of disease, and biological and social responses

Technology, Organization, and the Medical-Industrial Complex

Some authors have extended the study of particular instruments to make visible theways that work and medical work spaces are affected For example, equipment such

as diagnostic imaging requires specific skills, leading to the development of new fessional groups, and costly, large-scale equipment often necessitates architecturalchanges and clinical facilities with the capacity and expertise to handle it Sophisti-cated diagnostics may then be bundled with related services at centralized, often urbanlocales (Barley, 1988; Blume, 1992; Howell, 1995) Others expand analyses to includethe broader informational, organizational, economic, and political systems in whichtechnologies exist, trying to capture power relations in terms of how technologies will

pro-be used and by whom Stanley Reiser in particular drew attention to the situation oftechnology within more general problems related to the medical-industrial complex

His landmark book, Medicine and the Reign of Technology, was a significant

contribu-tion during a time of alarming health care cost increases (Reiser, 1978)

Another key work in this vein was Nelkin and Tancredi’s Dangerous Diagnostics

(1989) Writing about the explosion of diagnostic tests, the authors exposed the nection of tests to reimbursement patterns from insurance plans Payers, interested inlimiting costs, may either create an imperative to use tests (as in the screening ofpotential policy holders for costly diseases or when a high reimbursement rate createsfinancial incentives for physicians to test many patients) or may restrict access tocostly tests (sophisticated studies may be ordered when inexpensive lab tests are incon-clusive, but may or may not aid in diagnosis) Insurers desire diagnostic data to esti-mate life spans and employers to estimate productivity and limit liability

con-In a remarkable example of the linkage of state economic interests, the medicalindustry, and the diagnosis of disease, Plough (1986) demonstrated how concepts ofcost-benefit and clinical efficiency were built into medical definitions in the newlycreated disease category of end-stage renal disease (ESRD) Essentially, the high costs

of chronic illness through the mid-twentieth century became the lens through whichthe complex physiology of kidney and other organ failure were viewed Ultimately,treatment options were narrowed to dialysis rather than other possible therapeuticoptions, in large part because of intensive lobbying by manufacturers of the new tech-nology Plough’s work exemplifies a shift to understanding technologies as being con-stituted by interactions among various elements at differing levels, rather than ashaving a unidirectional impact “upon” society.

Social Constructions, Material Practices, and Assemblages

The move in STS more generally toward social construction of technology examinedthe social nature of the way truth claims are made and facts are stabilized This led anumber of researchers to revisit the content of specific artifacts, rather than their usealone Other constructivists took more of a systems approach, examining artifactswithin their institutional environments, which helped link close-in studies of specifictechnologies to more macro-level views (Bijker et al., 1987) Edward Yoxen’s (1990)study of ultrasound’s development into a key diagnostic tool is an example The movefrom a nonmedical domain (the military) to medicine, and its ultimate use for diag-nosing problems in fluid-filled areas of the body, required consensus among diversegroups of clinical medical, engineering, and physics professionals and negotiationacross professional, technical, and institutional domains about appropriate applica-tions Also, the images were difficult to interpret for clinical users accustomed to chem-ical or radiological data Perceptual blocks from some potential users could beameliorated by making the images simpler and easier to read, but this was possibleonly at the expense of technical complexity Image data were thus produced notsimply as a matter of theoretical science or accurate reproductions of bodily interiorsbut as a compromise and a result of a series of tradeoffs between reliability and ease

of interpretation necessary to make the technology usable in the clinic

An extension of social studies was actor-network theory, which took seriously bothhuman and nonhuman actors as having a form of agency Technologies are not passive

in this view; rather, they actively intervene in the situations in which they are put touse Annemarie Mol (2000) illustrates by showing that self-measurement devices forglucose do more than allow for the measurement of preexisting facts Instead, theyalter the value of the facts by changing the target of treatment (more frequent mea-surements report glucose levels on a different, higher curve than the previous nor-mative ideal) This in turn ratchets down the level of blood glucose deemed to beacceptable The device made to detect abnormal blood sugar alters what counts asabnormal, Mol argues, creating a type of nonhuman agency

Social constructivist perspectives are often criticized as placing too much emphasis

on social determinants, with insufficient consideration of possible agendas built intotechnology design and deployment or of the kinds of knowledge being produced.Actor-network studies are criticized because they tend to focus on managers and eliteexperts in technological domains, with insufficient attention to those who may beless visible but yet are affected by the technology Using a “social worlds” approach,

Clarke and Montini (1993) point out that there may be actors downstream who maynot be directly involved in networks of innovation but are certainly implicated inassumptions and decisions being made on their behalf (see the following section).Another approach to analyzing medical technologies is to consider how the materialpractices of doing research and clinical work constitute medical knowledge That is,the cell culture techniques, methods of quantifying and visualizing biological phe-nomena, and other routine activities in the lab may, for example, affect the way diseasemodels are formulated or how life forms get defined Similarly, practices involved incategorizing pathologies, handling data, establishing testing or treatment protocols,and determining where patients will be treated (and by whom) are all linked

to assumptions about health, illness, and appropriate care (Casper & Berg, 1995; Pickering, 1992)

Observing material practices shows how tools may be made to be the “right toolsfor the job” (Clarke & Fujimura, 1998) The process of “making it right” may occureven after the technology has been introduced into routine use, as in the case of thePap smear (Casper & Clarke, 1998) A number of tinkering strategies, including chang-ing definitions and techniques, were required by pathologists, clinicians, public healthofficials, and others before the technique became accepted as a diagnostic screeningtool for cancer The coordinating and negotiating activities that take place across dis-ciplines and domains have become a key to understanding innovation and knowledgeproduction In her work on cancer researchers, Fujimura (1987) argued that the work

of articulation and alignment in order to gain agreement and stabilize facts is whatmakes problems “doable.”

Alignment of interests, theories, and techniques may affect acceptance, rejection,

or routinization of a technology, but so may political exigencies, cultural values, orethical concerns Legal concerns, values about life extension, or political issues related

to the termination of particular lives may become the dominant factor in the minations of dead, dying, or salvageable life, trumping network alignments or evenevidence of a technology’s efficacy (Kaufman & Morgan, 2005; Timmermans, 2002)

deter-A number of recent works reflect on cultural influences on technologies, healing ditions in various cultures, and power relationships in the clinic and lab that areimportant contributions to STS literature on technology (Brown & Webster, 2004; Lock

tra-et al., 2000)

Another important aspect of studying diagnosis is the way facts are stabilized Cambrosio and Keating, among others, demonstrated the subtle ways that medicalknowledge is constituted through nomenclature, tacit knowledge, and proceduralrituals (1992) For knowledge to be durable, data must be made to be intelligible Oth-erwise it has little clinical utility Test results must also be able to be compared acrosspatients and conditions Yet protocols to collect and interpret information are based

on criteria that are often arbitrary and site-specific and may be limited by capabilities

of local expertise Nevertheless, data have to be intelligible to have clinical utility Burriand Dumit (chapter 13 in this volume) describe difficulties of interpreting data inimaging technologies, which are particularly problematic Visual records produced by

computerized tomography, ultrasound, PET scanners, and magnetic resonanceimaging are not photographic captures of reality but mathematically constructed rep-resentations of structures or metabolic functions Image interpretation requires con-siderable skill and agreement on what the images really show as well ascross-referencing to other ways of mapping anatomy (see also Cartwright, 1995;Dumit, 2004; Prasad, 2005).

Computerized medical making tools were meant to streamline making at the bedside and increase objectivity by comparing patient information toreference databases and standardized care plans Although these tools operate on sup-posedly stabilized facts about diagnoses, other social assumptions about patients andtheir disorders get built into the systems, as demonstrated ethnographically by Berg(1997) and Forsythe (1996) Although information systems were developed as datainterpretation tools to aid in classifying ailments and rationalizing variant and costlypractices, they function in multiple roles, including reordering work patterns in theclinic, changing the content of bedside work, and in some cases, reifying power dis-parities between patients and caregivers

decision-Blending some ideas from constructivist and network perspectives, a number ofresearchers view technologies as an assemblage of machines, knowledges, practices,people, histories, and futures This framing enables a different understanding of theembeddedness and potential power of medicine in our everyday lives The innovation

of the polymerase chain reaction (PCR) for example, illustrates how a concept (themanipulation of genetic material) led to a technique (the ability to identify andamplify DNA), which itself was transformed into a form of knowledge production thathas profoundly influenced cultural change in science and in popular understandings

of biological life (Rabinow, 1996) Analyzing such transformations sheds light on theemerging forces that animate predictions such as those which opened this chapter.Keating and Cambrosio successfully illustrate key points about heterogeneity ofpractices and settings, coordination, and standardization in their extensive study ofpractices in immunology laboratories Their recent work is concerned less with laboratory-level phenomena and the production of local knowledge than with inter-laboratory traffic, with attention to the configuration of instruments, people, methods,concepts, and substances that traverse domains of biology and medicine, science andtechnology, and disciplines within biomedical sciences (Keating & Cambrosio, 2003).They argue that the existence of such networks is necessary for the establishment ofclassifications from which diagnoses and prognoses are made The authors call suchnetworks “biomedical platforms.” Platforms are more than passive infrastructural orcoordinating activities, however They generate new kinds of biomedical entities thatsometimes slip between clinically or laboratory-based definitions of pathology andmake networks possible In this way, the authors distinguish platforms from social ortechnical networks (theory-methods packages or actor networks)

Using the example of leukemias and lymphomas, diseases that target the immunesystem, the authors observed local patterns of interpretation that emerged when new techniques and types of expertise were grafted onto existing practices and

organization of work For example, in the United States it is visually oriented gists who are in charge of the labs, whereas in France it is medical biologists, accustomed

patholo-to mathematically derived measures This made a difference in the scoring of cellmarkers and, hence, which markers were seen to be clinically relevant In turn, this had

an effect on attempts to create classification systems with which to diagnose, categorize,and give prognoses for diseases But classifications change with new data collected fromadditional patients, and they do more than simply order information Classificationsthemselves, then, are tools leading to new knowledge about disease entities

Classification and Standardization

Classifying patients and diseases involves processes of standardization, which are alsocritical for making protocols and instruments work across locales The less visible work

of standards setting is where cultural forms, power relations, and gate-keeping areestablished in ways that not only enable work to proceed across incommensuratemodels and data sets but also legitimate particular ways of thinking about disease(Bowker & Star, 1999)

Standardization activities were central in the transformation of healing practicesinto scientific, technological medicine By the mid-nineteenth century, efforts hadbeen made to increase the reliability of clinical judgments that previously had beenmade by observation of bodily signs and by the physician’s senses of touch, smell,and sight Newly introduced instruments provided quantifiable measurements ofbodily function, visualizations of bodily interiors, and graphic representations of rela-tionships over time and across subjects

The quantification of information from and about patients’ bodies was meant toprovide an objective snapshot of bodily conditions but also served to create indica-tors of pathological mechanisms that were thought to be linked to identifiable diseaseentities Whereas diseases had earlier been seen as idiosyncratic with multiple possi-ble causes, concepts of disease categories could now be understood apart from partic-ular bodies and circumstances (Rosenberg, 2002) Furthermore, data from instrumentscould be more easily aggregated in ways that could also be used to govern popula-tions Foucault’s (1974) notion of biopower has been influential in this regard By thenineteenth century, statistics and other administrative means were employed to surveyand analyze populations and plan state programs for health and welfare As life itselfbecame an object of political scrutiny and intervention, both individual bodies andpopulations could be subjugated through techniques that included the constant mon-itoring, testing, and improving of the self (Foucault, 1978; see also Rabinow, 1992;Turner, 1996)

On the one hand, the increasing specificity of diagnosis matched by ever more geted tests (whether or not interventions are available) appears to make medicine moreoriented to individuals, while on the other hand, informational technologies enabledata to become more abstracted at the level of populations Modern biomedicine seeks

tar-to see, chemically analyze, or otherwise detect changes in individuals’ bodies down

to the genetic and molecular levels, and considerable investments have been made in

making or adapting tools to do so At the same time, the data are pooled both to makeclaims about causal links and to generate standardized, rationalized care plans applic-able to large groups.

The effort to standardize clinical practice guidelines involves increased scientificreview of new and old therapies to produce comparable, quantifiable proofs of effi-cacy This concept, known as evidence-based medicine and public health, has been apowerful trend in health policy, influencing trials of new therapies, payment patterns,and clinical decision-making Although the intent is to promote best practices formaking decisions about patients, current models and proofs often do not take intoaccount the many political, cultural, and behavioral realities that affect interactionsamong patients, physicians, the health care system, and the environment At the sametime, the way evidence about bodily conditions and medical therapies is producedsays much about the mutual penetration of research, industry, the clinic, and the state.Techniques of biopower can be seen today in the connections between formalmedical classification systems and the state system In their study of the InternationalClassification of Disease (ICD) system, Bowker and Star (1999) outline the linksbetween medical and other welfare systems in which the state has a central role Theauthors suggest that an elaborate information system that collects data on manyaspects of human life on an ongoing basis and can be mined for a variety of purposes

is essential to the state’s interest in the health and well-being of citizens, which arealso concerns for the good of the state The result can be improved quality of clinicaldecision-making, cost savings, and healthier citizens, but it also means increased sur-veillance and the potential for discrimination for those in- or out-of-category

Still, there are tensions between attempts to standardize, normalize, and unifybodies and technological practices and the diversity that bodies display under varyingconditions, as the set of studies by Berg and Mol (1998) illustrates The authors arguethat diseases and the technologies used to diagnose and ameliorate them are not asingle thing to be understood, but rather they become different kinds of objectsthrough material and social practices Such studies focus on the stories that are told about medical-scientific objects in diverse environments to show how norms getestablished

Subjectivity, Identity, and Emerging Medical Technologies

Using diagnostic technologies to name and classify diseases not only provides a meansfor generalizing across populations, time, and locales but also provides a rationale forjustifying giving or withholding treatments and labeling individuals and groups asbeing ill, aberrant, or “at risk.” Diagnostic technologies and classifications thus alterhuman experiences and subjectivity Along with theories about the body and its well-being, technologies can serve to sort individuals into groups and reorder social rela-tionships on the basis of classifications One example comes from Biehl, Coutinho,and Outeiro’s study of HIV/AIDS testing in Brazil (2001) Counterintuitively, thepeople who most requested testing (and repeated testing) were those who wereseronegative The authors argue that testing capitalized on anxiety in target healthy

populations, where individuals reported AIDS-like symptoms that often were linked

to worries about other social issues such as sexuality and oppressive gender roles Thiscreated a ready market for tests, which people used as way of formulating sexual ori-entation and identities

Diagnostic tests can provide evidence of existing or potential pathology, but whendata are used to create categories based on probability and risk rather than “normal”

or “ill,” new forms of subjectivity are created Genetic tests are increasingly being used

to create these new categories When applied to other nonmedical institutional tings, such categories have far-reaching implications for governance and for individ-ual lives Susceptibility to substance abuse or chemical sensitivity, potential psychiatricdisorders, probability of manifesting a genetic disorder, or even being in the state ofcarrying a gene can have serious consequences in terms of workplace discrimination

set-or the courts (Dumit, 2000; Rapp, 1999)

Paul Rabinow (1992) argues that the ability to know and administer informationabout individuals’ genetic makeups through genetic testing and the development ofgenomic biology will have the effect of reordering social relations and the way soci-eties think about therapies Administrative management of individuals and popula-tions, particularly in the form of risk calculations, will be as critical as or more criticalthan direct interventions, creating a new form of what he calls “biosociality”—newsubjectivities based on medical-administrative categories rather than traditional socialrelations

Sorting people into categories of normality on the basis of interpretive data is lematic, as the previous discussion of imaging suggested “Normal” on radiologicalscans may mean a “typical” looking or even an ideal type, but it may not necessarilymean “healthy” (Dumit, 2004) Visual images can project other forms of subjectivity,

prob-as when images of a developing fetus became cultural icons prob-as much prob-as pieces ofmedical data to identify abnormalities The images are thought to create emotionalbonding to the fetus and to establish a separate identity for the fetus as a person (Petchesky, 1987; Hartouni, 1997) The additional use of images helped solidify ultra-sound’s position as an unquestioned clinical tool, even though experience has shownthat its use makes little difference in pregnancy outcomes

TRIALS OF EMERGING TECHNOLOGIES

Trials for drugs, devices, and therapies become an extension of diagnosis through theway knowledge is produced in both local and global contexts The experiment-therapycontinuum is most visible during this part of emerging technology development.During such trials, the less visible participants may appear and controversies might arise.Oudshoorn chose the clinical testing phase of a new drug as a way to study the waytechnologies and potential users co-construct each other (2003) The innovation ofcontraceptives for men (the “male pill”) involved the destabilization of dominant cul-tural narratives about concepts of masculinity The negotiations of meanings in thetesting phase revealed that in order to be culturally as well as technically feasible, an

identity of test subjects and potential users as caring, responsible men had to be structed Importantly, by viewing a technology’s networks from the consumer’s point

con-of view and challenging assumptions con-of who “the user” is, she was able to see the role

of subjects’ partners in such constructions as well as how various users’ perspectivesaffected product design and potential acceptance

Clarke and Montini (1993) explored the various interpretations of controversial,early-stage technologies in the context of contentious social issues with their study ofthe abortifacient RU486 Using a social worlds approach enabled the authors to iden-tify not only the human experts active in the field (reproductive scientists, FDA per-sonnel, politicians, physicians, lobbyists) and the nonhuman actors, but those actorswho may be less visible in early development, yet implicated by virtue of the fact thatactions taken in the arena will have consequences for them In this way, rather thanviewing the events as a simple story about the relations of domination in reproduc-tive politics, they demonstrated the competing claims and representations of the drug

as a “second-generation” birth control pill, a means of mobilizing feminists, a ical dangerous for women, or a safe way to have an abortion

chem-With increased involvement of the state in the organization of health care and theneed to provide objective measures to replace individual skill and judgment, the ran-domized clinical trial became the “gold standard” by which more subjective evalua-tions of new diagnostics and therapies were evaluated scientifically (Marks, 1997;Timmermans & Berg, 2003).3

With so many new therapies to evaluate, and with complex innovations involvinghybrid components (biological, chemical, computing), there is a demand for exper-tise in protocol design Contract research organizations (CROs), generally for-profitgroups outside the usual clinical review processes, became an institutional innovationthat linked technology companies with health care providers, disease concepts, andhuman subjects on a global scale Product manufacturers sponsoring the trials,however, may be concerned with how data from trials can be formulated in a waythat serves not only regulatory purposes (proof of safety and efficacy) but also mar-keting purposes, according to Petryna (2005), who studied global recruitment ofhuman subjects for such trials

Petryna’s main points have to do with the mutability of international guidelines forprotecting human subjects in experimental research for the sake of expediency and topave the way for an emerging human subjects research “industry.”4Of interest to theanalysis of emerging technologies, however, is the observation that North Americanand Western European populations are too contaminated by technologies to test newones; that is, the pool of potential subjects is shrinking because too many are alreadytaking drugs or therapies that might interfere with the new therapy being tested.Dumit (2003), in his work on the ubiquity of pharmaceuticals, would argue that thissays a great deal about the necessity of chemical technologies to sustain life, at least

in North American society

Since CROs must recruit large numbers of subjects, they do so in countries wheremedical technologies are less available The requirement of testing experimental

therapies in wealthy countries thus becomes a form of health care delivery in statesthat cannot afford their own drug and device technologies.5A result is what Petrynacalls ethical variability, that is, compromises on the type and degree of oversightrequired based on assumptions about the potential users and their greater willingness

to participate within political and economic contexts

As a technology moves from the status of experimental device to routine therapy,meanings may change Barbara Koenig (1988) argued that many technologies arequickly taken up because of a “technological imperative” whereby physicians strive

to use the latest equipment, even in the absence of much evidence of effectiveness.Illustrating with the history of the adoption of therapeutic plasma exchange forautoimmune diseases, she explored the social processes that led from an infatuationwith the new to the somewhat chaotic, learn-as-you-go environment of introduction,

to the change in roles and rituals that indicated its acceptance as a routine therapy.The people involved—including nurses, physicians, and patients but also manufac-turers’ representatives—adapt social roles, supplies, and procedures to make the tech-nology work in a more routinized way In the process, the adoption of the new toolbecomes a moral imperative as well, as the failure to provide a new therapy may come

to be seen as unethical

The examination of knowledge production through clinical trials, instrumentdesign, and data interpretation demonstrates several things: evidence is malleable and takes multiple forms to do what we ask it to do It may prove a benefit of technologies compared to cost or effectiveness (however that is defined), determine fair allocation, and define users and agenda-setters Yet the literature on theproduction of knowledge through medical technology trials reveals a gap in STSstudies, that is, the differences in cultural and scientific authority and how local biologies do or do not get incorporated into medical technological systems (Lock et al., 2000)

Diagnosis may have been a revolutionary way of understanding disease through thetwentieth century, but the concept itself may now be changing What is the meaning

of diagnosis when many of the emerging technologies meant to detect disorder are

being used to test other technologies, rather than the person, as in the case of

person-alized genomics used to determine whether a drug is effective or safe for a specificperson, or when brain imaging is used to calibrate other tests? What about imagingused to detect which parts of the brain are aroused in “rational choice” games so thatthe information can be used for marketing? Home diagnostic tests—often performedwithout clinical expertise or intervention—are already being used for everything fromjustifying lifestyle choices to tracing ancestral roots Individuals in their role as con-sumers can buy test kits or visit walk-in screening centers without an order from theirphysician The media (including the Internet), advertising, and novel, emerging forms

of commerce should be further analyzed in relation to these new roles In addition,disease concepts are not so stable as bureaucratic systems presume As anyone famil-iar with STS perspectives knows, definitions made for medical, legal, or social purposeschange over time and in varying contexts Categories built on definitions of “gender

identity” or “chemical sensitivity” may not be settled by simply acquiring more logical or other data (Dumit, 2000).

bio-At the very least, ways of analyzing the technologies involved may need to be revisited Most of the emerging technologies are hybrids of computational, com-munications, mechanical, chemical-pharmaceutical, and biological elements Eachcomponent brings in various kinds of expertise, participants, and ways of defining themedical problem to be solved Many are being used for multiple purposes simultane-ously, such as a therapy for a disorder being used to enhance performance in a healthyperson, which positions them differently both socially and technologically in eachsetting In the next section, I recount additional forms of emerging technologies thatchallenge our current ways of understanding medical technologies’ role in contem-porary life

TECHNOLOGICAL MODIFICATIONS OF THE BODY

By the mid-1980s, interest in medical and social practices affecting life and healthturned toward a focus on the body While some writers suggested that the body isbeing displaced by information, imaging, and other representational technologies(Hayles, 1999; Martin, 1992; Waldby, 2000), others were drawn to the materiality ofthe body, asking what it means to be “biological” and what the implications of medicaltechnologies are for how people live, work, conduct research, or receive health care(Franklin & Lock, 2003) Issues of identity and subjectivity were central to all theseexplorations, as emerging medical sciences and technologies disrupted receivednotions about cultural meanings of the body and its social relations

Yet it is alterations to the body, including prosthetics and surgical or cal interventions, that most visibly transform identities and the way we interact in the world There have long been concerns about the boundaries of the human The distinctions between living and dead, persons or things, the natural and the cultural or technological, human and other species have been questioned throughouthistory, as evidenced in religious concerns, literature, and public controversies in reac-tion to innovations in science and medicine, particularly experiments with extending

pharmaceuti-or altering life fpharmaceuti-orms Concerns about boundaries have become blurred in new wayswith the advent of artificial organs, recombinant gene techniques, and other biotech-nologies that combine biological, mechanical, and sometimes other species compo-nents A number of works in the 1990s challenged romanticized ideals of pure ornatural categories, including older concepts of individuals as bounded, autonomoussubjects Instead, these works used the image of the cyborg or hybrid to explore emerg-ing relationships among information and machine technologies, humans, andanimals Through research on the transplantation of human or animal tissue, artifi-cially assisted reproduction, artificial life forms, bioinformatics, and other boundary-crossing technologies, they questioned taken-for-granted categories of nature andculture (Brown & Michaels, 2001; Gray, 2001; Hayles, 1999; Latour, 1993; Strathern,1992)

Donna Haraway (1991, 1997) in particular led new thinking about human and human relationships by drawing attention to the way that lives and identities are fash-ioned through boundary crossings Boundaries, often assumed to be sacred and static,are easily transgressed by emerging biological technologies that can create artificialcells and chromosomes, life forms made from minimal genomes Symbiotic relationsare being established between machines and humans at the intimate, subcellular levelwith nanotechnologies, computer-mediated representations, patented life forms, andthe marriage of information technologies with biology and medicine Haraway’s sub-jects are the knowledge-power practices that become inscribed in particular materialways and their consequences for a politics of the body in contemporary technoscience.The work of Haraway, Hayles (1999), and others has stimulated discussion and cri-tique of both seductive and ominous notions of what it might mean to be “trans” or

non-“post” human Beyond STS communities, however, the moral quality of such debateshas resulted in backlash from neoconservatives in political and public life (Fukiyama,2002)

To avoid getting stuck in moral judgments about such fantastical possibilities, it may

be more useful to trace the history of techniques for augmenting human function,asking the question of what particular kinds of subjects are being created by the wayaugmentations are conceptualized and executed

Prosthetics, Bionics, and “Being Fit”

Humans have always fashioned replacements for failed or lost body parts and tissue.The array of contemporary parts replacements is stunning It includes, to name a few,artificial hearts, artificial respiration machines, artificial retinas and cochlear implants

to restore partial sensory function, and myoelectric limbs that can automatically adjust

to environments and sense user movement intention

A central question in the design and deployment of augmentations is what it means

to have an able body and how appearance and function affect identity For example,

as several medical historians have suggested, the sight of disfigured bodies can createpubic anxieties about vulnerability and the ability of citizens to take care of them-selves There may be social pressure to “fill in” missing parts or to provide prosthet-ics to serve as implements with which to perform certain work tasks In this sense,prosthetics function on several levels: to demonstrate progress in medical technologyand the ability to fix anything, to assuage national conscience about bodies mutilated

in war or industrial trauma, and to enable individuals to function socially as well asphysically (Ott et al., 2002; Thomson, 1997)

Lupton and Seymour (2000), in a study of disabled individuals’ relations to theirassistive technologies, argue that technologies have both the potential to enhance self-hood at the same time that they exacerbate the meanings of disability Assistive tech-nologies such as communication boards and wheelchairs may augment function andprovide independence and control, but they may also suggest dependence and dif-ference The theme of fitness was somewhat differently pursued by Emily Martin, whowrites about the alignment of national and corporate competitiveness goals and social

expectations to have flexible, immunologically adaptable and physically strong bodies(1994).

There is a complicated set of issues about the normalization of nonstandard bodiesthat has not yet been fully explored in STS studies In particular, processes of defin-ing who is disabled, who may receive what kind of replacement device or therapy,and how this relates to national policy and views of technology use need further expli-cation (L Davis, 1995; Kohrman, 2003).6Blume’s (1997) remarkable, detailed study ofthe introduction of cochlear implants to amplify sound showed how the deaf resistedthe designation of “disabled,” claiming that theirs is a community identity based on

a variance from other parts of the population and should be left alone The deaf feltthe use of implants was an attempt to use medical technology to discriminate againstthem and normalize or change their identity.7

If individuals experience their body as expression of identity, then differing kinds

of prosthetics (for mobility, visible normality, or sex change or cosmetic purposes) maybring private bodies and public identities into alignment “What, after all, did thenatural body mean if an engineered body approximated one’s sense of self far morepersuasively than the body one was born into?” (Serlin, 2002: 3)

Steven Kurzman is among the few social scientists who examine how individualsand their bodies learn to “perform” with a prosthesis in his work on amputees(Kurzman, 2002) Somewhere between the patient’s descriptions of discomfort andmobility needs and the practitioner’s analysis of gait and the biomechanics of theadapted device, tacit knowledge and a mutual reading of body signs work together toalign the body with its new body part In this example, technologies (the prosthetic,measuring, and testing devices and the medical record, among other things) are onefacet of the articulation of need, solution, and identity as a person-with-artificial-parts.Steven Kurzman’s observations of artificial leg design in the United States, ruralIndia, and Cambodia illustrate the work of incorporating local body culture into bodymodifications (2003) The Jaipur limb uses locally available materials rather than high-tech Western imports, with designs that suit local geography and needs, such as theability to walk on different kinds of terrains, with or without shoes, or to squat or sitlow, rather than in chairs Significantly, the design principles were meant to be a part

of an overall community-based rehabilitation effort, using local skills and knowledge

In this way, these prosthetics became enabling not only to the wearer but also in theway they were situated in transnational production systems and networks of power.The replacement and exchange of body parts is troubling for some analysts In theirpioneering analyses of organ substitution dating from the 1950s, Renée Fox and JudithSwazey expressed their fundamental concern about the social obligations involved inexchanging human body parts as valuable resources (1974, 1992) In their interpreta-tion, the enterprise of “remaking people” through kidney dialysis and transplantationwas based on assumptions that the body is mechanistic and fragmentary Such a reduc-tionist view of the body shifts the focus of medical practitioners and product devel-opers to replacing worn-out parts rather than dealing with the root causes of suffering,dying processes, and the proper provision of care At the same time, the concern over

supply and demand issues arising from the view of organ failure as an allocationproblem contributed to the transformation of health care into a consumption activ-ity (see chapter 34 in this volume for a more extended discussion of organ trans-plantation and its researchers).

Their continued concern about a “spare parts” approach to medical therapy wasevident in later work on the development of an artificial heart and, more recently,analysis of the clinical trials for the AbioCor totally implantable artificial heart (Fox

& Swazey, 1992, 2004) By describing the suffering of the trial participants (most ofwhom died within a short time) and the ambiguity created when some bodily func-tions are replaced even while others are failing (the recipients had to be in end-stageheart failure to be eligible for the trial, and the mechanical heart could have outlastedthe patient), Fox and Swazey raised the question of what “success” means in theattempt to create synthetic substitutes for vital organs They also observed what theyfelt was an explicit deployment of American cultural symbols to describe both the trialand its participants Experimental subjects were described as pious and hard-workingcommunity members who became pioneers in the frontier of medicine, and as such,American heroes For the authors, the recruitment of subjects as cultural symbols raisesquestions about what other social purposes are being pursued by experimental medi-cine, in particular, selling the need to use medical technologies to demonstratenational progress and superiority

Enhancement Technologies

With the technological capability and social acceptability of modifying and menting the body, there has been rapid growth in the kinds of procedures and assistsmade available Most of these have been based on repair and restoration of function,but increasingly, techniques are being employed to improve mental and physical traitsbeyond what is considered to be normal or necessary for life These so-called “enhance-ment technologies” raise unexamined questions about cultural notions of deficiencyand ability in contemporary societies, as well as what constitutes “therapy” and ade-quate care (L Davis, 1995; Hogle, 2005; Sinding, 2004)

aug-The use of medical interventions to improve human performance begs the tion, what are the proper goals of medicine and is it ever possible to distinguish themfrom other social goals? Foucault (1978) argued that modern states regulate their sub-jects not through repressive means, but rather through social institutions such as bio-medicine Medicine can define health as a certain type of fitness toward the goal ofproducing good citizens and culling out deficient ones Large social projects such aseugenics and policies that selectively favor or disfavor certain states of being are exam-ples Biopower relates to governments’ concerns with fostering the life of the popu-lation, which is achieved through disciplines (regulation) of the body Individuals areencouraged to participate in the constant monitoring, testing, and improving of theself (Foucault, 1978; Turner, 1996) Viewed through the neoliberal lens, responsibilityfor betterment has shifted from the state to individuals themselves, who are expected

ques-to strive ques-toward goals of ever higher physical and mental functioning—a sort of

ther-apeutic culture of the self (Rose, 2001; Rose & Novas, 2005) The goals are often defined

by commercial interests in selling improvement products as much as state interests inregulating bodies (Bordo, 1998; Dumit, 2003; Featherstone, 1991) Rather than oper-ating at the level of improving societies then, the body becomes the object of improve-ment work

Some explain enhancements more simply as being consistent with a culture thatpursues perfection and desires to avoid the difficult problems of everyday life, or as asymptom of less tolerance for variation and flaws (Fukiyama, 2002; President’s Council

on Bioethics, 2003) Others suggest that enhancements are liberatory, that they areessentially a type of self-chosen evolution (Bostrom, 2003) Caplan and Elliott (2004)argue that attempts to achieve better performance should be allowed on the basis thatscience should be provided free rein for discovery Such moral judgments about therightness of enhancements, and about who should receive them and under which circumstances, are linked with ways of ordering and valuing individuals in varioussocieties (Parens, 1998; Elliott, 2003) For example, when aging is viewed as an eco-nomic and social “problem” rather than a normal life process, there are several pos-sible responses: invest social resources in preventive care, innovate technologies toameliorate suffering from degenerative disorders associated with aging, or developtechniques to extend lives or reverse the aging process The aged may feel stigmatized, less able to compete for jobs, or in other ways subjects in need of technological intervention and may either seek a more youthful appearance through cosmeticsurgery or seek rejuvenation through other anti-aging enhancements (Post & Binstock,2004)

The confluence of technology, identity, and consumerism has been most thoroughlyanalyzed in relation to individuals’ decisions to alter their bodies for cosmetic pur-poses The history of aesthetic surgery illustrates the intertwined influences of thedemand for technical expertise in reconstructive surgery to treat injuries from war andthe increase in injuries with the industrial revolution, trends in postwar medical prac-tice, and cultural concerns about appearances during a time when increasing immi-gration to the United States drew attention to ethnic differences (Gilman, 1999;Haiken, 1997) Yet the number and kinds of techniques to improve appearance haveproliferated in many countries,8becoming one of the most profitable forms of medicaltechnology available In addition to procedures to make individuals more youthful orbeautiful (according to changing cultural notions of what that means), new proce-dures such as collagen injections into foot pads, toe shortening, and navel reposi-tioning are performed to accommodate changing fashion trends Hand rejuvenationand chin implants, popular among business and sales professionals, suggest a desire

to change appearance for competitive reasons (American Society of Plastic Surgeons,2004) Susan Bordo (1998) and Anne Balsamo (1992) argue that gender is the filterthrough which cultural norms of beauty and treatment of bodies are interpreted andpractices of power are played out and that such procedures are ultimately harmful towomen because negative messages are reinforced for other women Kathy Davis’s(1995) ethnography of plastic surgery patients, however, suggests that women are not

passive victims; rather, they become active agents in changing their position in society

by changing their appearance

Arguments about autonomy and the choice to reconstruct bodies and selves are atthe heart of many enhancement technologies Carl Elliott (2003) argues that the rapidrise of psychopharmaceuticals is as much due to an individual’s search for authentic-ity in modernity and the commercially stimulated obsession with personal identity as

it is a treatment for disorders Some of his patients, for example, claim to feel “morelike themselves” on the drugs than off

Decisions about how such enhancements are viewed are consequential, since theymay determine how technologies may be used, who is allowed access, and who willpay Breast augmentation, for example, is considered to be a cosmetic procedure andwould normally not be covered in many insurance systems, but the case of recon-struction after breast removal raises the question of whether the procedure is criticalenough to a woman’s identity and well-being to warrant calling it a therapy Suchpolicy dilemmas make moral judgments about the social importance of breasts morevisible Complicating policy and practice decisions further is the growing practice ofusing therapies for nonintended (“off-label”) uses to enhance performance, as in thecase of drugs for Alzheimer’s disease and narcolepsy being used to improve memory

or cognitive performance in normal individuals, or of erythropoietin or gene therapyfor sports performance (Behar, 2004; Hall, 2003a)

Neural enhancements become particularly troublesome, as they may involvechanges in memory, cognition, and behavior The introduction of prototypes for aprosthetic hippocampus and a microchip for memory processing (to increase, pattern,

or erase memory) and drugs to alter brain chemistry will require new analyses of jectivity and personhood in its most intimate relation to technology (Gray, 2001;Farah & Wolpe, 2004; Hall, 2003a; Healy, 2004; Rose 2003)

sub-Further analysis is needed to explore the way enhancement technologies entailvarious life strategies and define multiple subjectivities Scrutiny of the kinds of deci-sions being made about the appropriateness of using biology to solve social problemshas been central in studies of biopolitical projects such as past eugenics programs, con-temporary genetic testing, public health screening for risk predisposition, the humangenome project, and others (Rapp et al., 2001) Yet enhancements demonstrate thatthere are niches where medical problem-solving around specific social issues of fair-ness and physical and social advantage may link up with concepts of bodily ability inmore complex ways Future studies should include critique of the persistent lack ofhistorical and social contexts in much of bioethics and health policy literature thathas framed debates up to this point (Hogle, 2005)

The human-technology interface, as demonstrated in the use of prosthetics,implants, and enhancements, can transform identities and disrupt received notions

of what it means to be human The regulation of newborns, the elderly, the injured, or others’ bodies through technological assistance and social and biologicalorders is similarly destabilizing (Lock, 2002; chapter 34 in this volume; Kaufman &Morgan, 2005; Timmermans, 2002) The ambiguous states that result often call for

brain-further legal-medical management to resolve the dissonance In some cases, as withwidely publicized cases of persistent vegetative state and controversial new techniquesthat manipulate life forms in unexpected ways, the state may become more centrallyinvolved In the following section, I elaborate the example of regenerative medicine

to illustrate the multiple mediations that medical innovations can make

Regenerative Medicine

Like previous benchmark medical technologies, regenerative medicine transformshuman identity and kinship; the relations of physicians, researchers, and patients; andsocial and economic forms of exchange Regenerative medicine thus becomes a modelcase for studying long-standing conversations in the social study of science and tech-nology about the production of knowledge and reframings of life, work, and socialrelationships Technoscientific production based on bodily materials also has signifi-cant implications for transnational and local governance and for the role of dem-ocratic participation in science and medicine

The neologism regenerative medicine (RM) stands for the set of sciences and nologies involved in the collective project meant to coax the body to repair itself andpotentially to extend the lifespan.9Common to definitions and descriptions are theintertwined notions of production (of therapies, capital goods, and solutions to prob-lems of health and aging) and the promise of the controlled ability to design, prolif-erate, and dispense new forms of living tissue

tech-A dominant theme in the RM narrative has to do with the naturalness of the sourcesfor healing (as compared to mechanical or chemical fixes); however, the need tocontrol processes requires technological assistance The ability to redirect certain cells

to become other kinds of cells, to make them perform functions alien to them, to getthem not only to proliferate but also to form three-dimensional structures and to staywhere clinicians want them to be involves remaking life sciences and engineeringtechnologies in ways that disturb cultural ideas about the relations of bodies to bodilyconstituents and what constitutes life Two RM researchers explicitly compare thetechniques to other kinds of engineering design challenges: “Coaxing cells to formtissues in a reliable manner is the quintessential engineering design problem that must

be accomplished under the classical engineering constraints of reliability, cost, ernmental regulation and societal acceptance” (Griffith & Naughton, 2002: 1010).Technological assistance in creating life forms has been elaborated in work on reproductive medicine, cloning, and preimplantation genetic diagnosis techniques(Cussins, 1998; Franklin, 2001, 2005; Franklin & Roberts, 2006; Strathern, 1992;Franklin & Ragoné, 1998)

gov-STS researchers have recently developed a more nuanced view of the complex tionships of technical tools, economies, and exchange systems in the production ofhuman tissues, pushing analyses of body commodification beyond limited discussions

rela-of dehumanization, reduction, and deconstruction rela-of the body into parts, and mercialization processes that have characterized many studies of technologies and thebody This view also differs from previous analyses of the discursive nature of the body