Coming to Terms with Biomedical Technologies in ...

Ulrike Felt Maximilian Fochler Peter Winkler

Coming to Terms with Biomedical Technologies in Different Techno-Political Cultures: A Comparative Analysis of Focus Groups on Organ Transplantation and Genetic Testing in Austria, France and the Netherlands August 2010

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Department of Social Studies of Science University of Vienna

STS 2010

Copyright You are allowed to download this paper for personal use only. This paper must not be published elsewhere without the author’s explicit permission. The paper must not be used for commercial purposes. Please cite this paper in the following way: Ulrike Felt, Maximilian Fochler and Peter Winkler (2010). Coming to Terms with Biomedical Technologies in Different Techno-Political Cultures: A Comparative Analysis of Focus Groups on Organ Transplantation and Genetic Testing in Austria, France and the Netherlands. Science, Technology, & Human Values 35(4): 525-553. The final, definitive version of this paper has been published by SAGE Publications, Inc. All rights reserved. http://online.sagepub.com

Address for correspondence: Ulrike Felt Department of Social Studies of Science University of Vienna Sensengasse 8/10 A-1090 Vienna, Austria T: ++43 1 4277 49611 E-Mail: [email protected] http://sciencestudies.univie.ac.at

Coming to Terms with Biomedical Technologies in Different Techno-Political Cultures: A Comparative Analysis of Focus Groups on Organ Transplantation and Genetic Testing in Austria, France and the Netherlands1 Ulrike Felt, Maximilian Fochler and Peter Winkler In this comparative analysis of 12 focus groups conducted in Austria, France and the Netherlands, we investigate how lay people come to terms with two biomedical technologies. Using the term “techno-political culture” we aim to show that the ways in which technosciences are interwoven with a specific society frame how citizens build their individual and collective positions towards them. We investigate how the focus group participants conceptualized organ transplantation and genetic testing, their perceptions of individual agency in relation to the two technologies and to more collective forms of acting and governing, and also their understanding of the two technologies’ relationship to broader societal value systems. Against the background of the sustained political effort to build common European values, we suggest that more fine-grained attention towards the culturally embedded differences in coming to terms with biomedical technologies is needed. The European Union (EU) has been described as a project of harmonization in technological, social, and political terms (Barry, 2001). From its inception the EU envisioned not only an economic and thus technologically unified Europe, but it also saw these factors as the important means and motors for social and political integration. Harmonization implies the reduction of national differences that seem to hinder the process of growing together as well as the quest for common ways of coming to terms with current and future challenges to governing, e.g. in biomedicine. This in turn calls for the creation of European actors and identities, such as the European Group on Ethics, or a European public to be represented in European citizen conferences. These and many other elements of the harmonization project, including European research projects, are also to be understood as performative of their objects to be researched, represented and governed. In other words, these are processes and attempts to construct a European techno-political culture.

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The authors would like to thank the editors and the anonymous referees for helpful comments on earlier drafts of this article, as well as Morgan Meyer for his help with some final language issues. This paper is based on work done in the project “Challenges of Biomedicine. Socio-Cultural Contexts, European Governance, and Bioethics” (www.cob-europe.org) funded by the European Commission, 6th framework programme, „Science and Society“, Contract No. SAS6-CT-2003-510238. We would like to thank our French and Dutch partners for sharing their raw data with us for the sake of this analysis.  

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Many arguments may be imagined why governing biomedical technologies on larger-scale than that of single nation states may be of advantage. However, a problem in many of these discussions is that technology itself and the challenges it poses are treated as virtually unrelated to their cultural context. We strongly challenge this position and stress that harmonization needs a deeper awareness of its cultural costs and obstacles. We contend that much of European political and scientific discussion lacks a more profound understanding of the intricate connection between technology and its respective cultural, political and national context. In doing we do not want to homogenize nation states and naively equate the borders of nation states with cultural changes thus disregarding cultural diversity within them. Yet, following Jasanoff (2005) we do want to understand how far the framing of nation states matters when it comes to dealing with biomedical technologies. This article focuses on the complex assemblages of political and technological cultures and their intersections. Its empirical basis is a comparison of focus group discussions on two biomedical technologies – organ transplantation (OT) and postnatal genetic testing (GT) – in three different national contexts – Austria, France and the Netherlands. The three countries chosen have very different histories and traditions in approaching the assemblage of technology, culture, and politics. The two technologies are examples for paradigm shifts in biomedicine. We begin by discussing the notion of techno-political culture, which will be our central concept. Then we address our comparative approach, the specificities of the biomedical field, and our empirical design. In the empirical part, we start by analyzing how participants debated the two technologies in their respective focus groups with affected and lay2 people in the three countries. More specifically, we investigate how the groups conceptualized the two technologies, their perceptions of individual agency in relation to the two technologies and to more collective forms of acting and governing, and also their ways of understanding the two technologies’ relationship to broader societal value systems. This, then, will lead us to a comparative analysis of our material, where we discuss our findings across three intersecting dimensions. The conclusion finally draws together our observations and develops the theoretical and political implications of our findings.

Technological Artifacts and Politics Classical STS work (Winner, 1986) has shown that social considerations strongly influence technological developments. In turn, norms and visions of social orders are inscribed into technological arrangements (Latour, 1991). However, contemporary societies do not only build social stability, they also envision social change in technological forms (Nowotny et al., 2001). From genomics to nanotechnology, the futures imagined through research are built upon and imply a simultaneous engineering of new technological possibilities and new social orders. Our usage of the notion technopolitical thus stresses the co-evolution of the political and the technological implying

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We will use in this paper the notion lay as synonym with non-affected. Both notions carry complex connotations which we are aware of. Participants were classified as non-affected by selfdescription and holding in comparison less expertise on the issue than affected participants were labeled „lay“.

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Felt/Fochler/Winkler: Coming to Terms with Biomedical Technologies  

that there may be cultural differences in the form the co-evolution of technology and society takes, depending on the social structures, value systems and cultural rituals technologies co-evolve with.

Techno-Cultures Latour (1993) has argued that the distinction between nature and culture is itself highly political, because it conceals the co-evolution of technology and society into different “nature-cultures”. Furthermore, as Akrich (1992) has shown, technologies are not standardized packages that remain the same whenever they are transferred. Rather, their specific local configurations are the outcome of negotiations, and they have no fixed meaning beyond their cultural embedding. We use the term “techno-(political)cultures,” to capture the ways (i.e., the practices, structures, and mechanisms) in which technologies are interwoven into a specific society. For example, Hecht (2000) shows how nuclear power in France after World War II was shaped by a distinctively “French” approach to technology, while the technology itself contributed to both French national identity and technological pride. On the other hand, Austria’s rejection of nuclear power by a national vote in 1978 represents one of the first pluralistic challenges to a hegemonic corporatist culture (e.g., Nowotny, 1979). Hence, the meaning of a technology is contingent, depending upon its specific techno-cultural and political setting, as also ethnographic work on medical technologies has shown (e.g. Hogle, 1999; Cohen, 2000).

Comparing Techno-Political Cultures A fruitful way to study techno-cultures is by comparison, because within a specific techno-culture, the way a technology is understood is implicitly shared, and thus contingent features are often naturalized by ascribing them to ‘the nature of a technology’ and not to its cultural embedding. Comparing Germany, Great Britain and the US Jasanoff (2005) argues that diverging political cultures best explain apparent differences in regulating techno-sciences. To grasp these differences she proposes the notion of civic epistemologies, which denotes “culturally specific, historically and politically grounded, public knowledge-ways (ibid, 249).” In her framework science and technology and how people approach them are not only influenced by political culture but they also become key elements of this very culture. This presupposes that lay people can and do develop a fine-grained understanding of technologies and their social embedding, which is far from self-evident. The classical public understanding of science tenet asserts that people lack information about - and thus understanding of - the purported “true nature” of a techno-scientific development, and mostly object to it on these grounds. The classical view, then, further supposes only one right way for understanding technology, which disallows cultural differences in people’s coming to terms with a technology and considers cultural variations only in the degree of people’s understanding and their forms of misunderstanding. In opposition to the classical position, we build our argument on work in the critical public understanding of science (e.g. Wynne, 1995) which assumes that lay people’s position towards science is deeply culturally rooted. Our argument is that Dep ar t m ent of Soc ial St ud ies of Sc ienc e | Univer sit y of Vienna 2010

 

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there is scope for a much more fine-grained picture of the cultural differences in coming to terms with technology if we attend to the multiple contextual reasons for a position, instead of judging the latter in terms of ‘right’ or ‘wrong’.

What is Specific About Biomedicine? There is hardly any other area in which people feel as directly affected by techno-science as in biomedicine, and for hardly any other field have the changes in the relationship between techno-science and the political been studied in such great detail. Concepts such as biomedicalisation have drawn our attention to how technological innovations reframe the understanding of the human body, reconfigure identities, and redefine seemingly stable basic categories such as health and illness or life and death (Clarke et al., 2003). However, the breadth of these concepts may partly have distracted our attention from nuances within these shifts. This makes it promising to look both at cultural and technological differences. OT and GT represent very different historical ways of thinking about and performing medicine. Transplantation medicine can be seen as a paradigmatic example for the imagination of the machine-like-body. Organ exchange thus means “repairing” the body in case of “malfunction” of one of its parts (Sanner, 2002). In contrast genetic testing is associated with the metaphors of information and risk (Kay, 2000). The body is perceived as a medium carrying a specific code to be mapped and read by medicine. These different ways of conceptualizing the body also affect the relationship between technology and the individual in the medical encounter. Whereas in OT the individual is both the focus and frame of reference of medical diagnoses and intervention, a test for determining genetic risks may often be interpreted by referring to population based data. In many cases the results of the test do not reveal anything directly about the concrete status of the tested person with regard to categories such as health and illness; rather the results only predict a person’s risk of developing an illness based on his or her membership in a genetically defined risk collective. These two technologies, then, reflect a frequently cited shift in medicine from case-based individual treatment to population-based medicine (Armstrong, 2002).

Method In this paper we present data and analyses from the European project “Challenges of Biomedicine: Socio-cultural Contexts, European Governance and Bioethics (CoB).” The project’s aim was to better understand how biomedical technologies are perceived in the public sphere and what role cultural values and backgrounds play in citizens’ perceptions. The empirical approach consisted in focus group discussions on two medical technologies, OT and post-natal GT. In this article, we are referring to the 12 focus group discussions carried out in Austria, France, and the Netherlands.3 Each biotechnology was discussed in separate groups of “affected” and “non-affected,” or “lay”, participants with a group size ranging from five to ten people. The criterion for selecting

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For data rights and responsibilities please see http://www.univie.ac.at/virusss/cob/respons.html 


 

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participants for an affected group was based primarily on candidates having had experience with the respective technology mainly as a patient or patient’s relative. In specific cases broader professional experiences were considered. The selection process included a special focus on creating an overall balanced group composition with regard to gender, age, and education. Because the CoB project was also interested in addressing religious and cultural differences within each national context, especially with respect to migrant communities, additional efforts were made to address these factors and groups. However, the response from migrant communities as well as from minority religious groups was minimal to absent compared to the respective majorities. The lack of response from migrant groups resonates with difficulties reported in using the focus-group method in cross-cultural research (Halcomb et al., 2007). The focus groups were carried out and facilitated by the respective project teams. In total, four two-hour focus groups were conducted in each country, two for each technology. Using a common interview schedule, the facilitator led the discussion from the level of individual perception of the respective technology, via personal decision scenarios that highlighted ethically controversial aspects, to a concluding reflection of possible alternatives for political steering, public information, and participation. The concrete issues discussed for OT were participants’ general perception of the possibilities and limits in choosing to receive an organ, and whether and under which conditions the participants would choose to receive an organ, donate their own organs after brain death, release a brain-dead child as a donor in case the will of the child is unknown, or become a living donor for a relative. We then questioned participants about how they perceive and assess the current organization of OT and the limits and possibilities of public engagement with these issues. The main topics for discussion sessions about GT were whether and under which conditions the participants would choose to take a test for a genetically inherited disease, in the case of known familial risk; how they perceive the implications of the test for their family, their self-understanding, and further life decisions; and how they would handle the information provided, and to whom they would disclose it. Finally participants were asked how they perceive and assess the current organization of genetic testing and the limits and possibilities of public engagement with these issues. All discussions were fully transcribed, translated into English and analyzed using a grounded theory approach (Glaser & Strauss, 1968) with the support of the qualitative research software Atlas.ti.

Coming to terms with biomedical technologies in different techno-political cultures To trace commonalities and divergences of attitudes between not only nationalcultural contexts but also between technologies, our analysis focused on how participants positioned themselves towards OT and GT in the focus groups. For each country, we first analyzed the discussions on the two technologies separately starting with a


 

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short outline of legal regulations and public discussion.4 We then draw together our observations for each country to explore the articulations between techno-political culture, visions of biomedical technologies, and our participants’ positioning towards them.

Discussing Organ Transplantation and Genetic Testing in Austria In Austria organ transplantation is regulated by an “objection solution,” which means that each person diagnosed as brain dead on Austrian territory is considered a donor if there is no knowledge of explicit prior objection. It is legally neither mandatory to inform the family, nor is the state obliged to inform citizens about the existence of an objection list. This quiet practice of non-communication may account for the high number of available organs in Austria. Transplantation is institutionally organized by a centralized set of actors who are largely invisible to the public. Although this policy is potentially controversial, it has never been a subject of critical public debate, in part because of media reporting: While the allocation of large numbers of organs has been praised for situating Austria at the top of the league in international transplantation medicine, the objection solution has hardly ever been mentioned. In the Austrian focus groups on OT both affected and lay participants dealt with the questionnaire’s scenarios in a quite disconnected manner that lacked a broader frame of reference. This allowed them to depict different, fragmented, and partly even contradictory images of technology in different parts of the discussion. In their first general assessment of the technology, as well as in their discussion of living donation, the majority framed OT as a constantly progressing craft, hardly shaped by any social context. By positioning themselves as past or possible future ‘users’, they considered this linear technological progress to be beneficial. This positive vision was disputed by only a few lay speakers who feared that organs may be replaced for the sake of mere “do-ability” with an accompanying loss of purpose in transplanting for the benefit of the patient. A connection between transplantation and a broader system – e.g., the logistics of acquiring and allocating grafts – was absent. Rather, organs simply seemed to “emerge” and “be available.” Later in the discussion the groups switched to a more systemic view of the donation system as they pondered the personal decisions involved in becoming a donor and releasing a brain dead relative for donation. The lay group expressed skepticism about whether the personal right of self-determination is guaranteed in the current system. They were widely unaware of the Austrian regulation. When the facilitator explained the legal situation, most participants were concerned about the patronizing nature of the medical system, which aims only at maximizing efficiency. Yet, they also expressed regret for the absence of a “real donation culture” based on a conscious choice to donate and, thus, to contribute to solidarity. On the other hand, affected discussants hardly ever switched to the hypothetical role of the donor; rather, their reflections were focused on their role as a recipient. As beneficiaries and supporters of the current system, they regarded the maintenance

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The sections dealing with short outlines of legal regulations and public discussion are also based on the research work of project partners shared in the framework of the project.  


 

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of its efficiency as paramount. Because the affected participants tended to view the general public as ignorant and not ready to deal with the sensitive topic of brain dead donation, they also perceived an increase in public information and, thus, in individual choice about becoming a donor as potentially endangering the functionality of the current system. Consequently, they categorically objected to this idea. When they discussed the releasing of a brain dead relative, the affected speakers empathized with the emotional pressures inherent in making a brain dead donation. Yet, at the same time, most of them pleaded that those who face this decision set aside emotions for the sake “of helping many people [AT_OTaff:175].”5 Their plea signifies that they attribute a higher value to collective interests than to individual choice. So both groups identified an efficient socio-technical script (Akrich, 1992) behind the Austrian donation system, which was implemented and is governed by a sovereign state. The state’s role was, however, assessed quite differently: Whereas the affected group framed it as rational and caring and serving the public good by guaranteeing a high donation rate, thereby rendering the problems of organ scarcity and trade obsolete, lay discussants viewed the state as patronizing its citizens by “overruling the person [AT_OTlay:139].” However, even the latter group felt ambivalent about changing the current system because it is seen as “working well.” They resisted taking a clear position in weighing personal rights against the likely problem of a reduction in available organs caused by a changed regulation. Post-natal genetic testing in Austria, in comparison to OT, is quite densely regulated. With very few exceptions, only licensed institutions can do genetic tests. Nondirective counseling, the patient’s free disposal of test results, and psychological care are to be guaranteed. Discrimination on the basis of genetic information is prohibited for employers and insurance companies. The structure of the testing system is rather decentralized and non-transparent. Neither the state nor any other actors offer any broad public information. Consequently, in-depth public insight into the regulations and testing opportunities, as well as a wider public discussion on the issue, are widely lacking. Media coverage is generally low and rather positive towards biomedical genetics. However, genetic data transfer and genetic discrimination are routinely portrayed as internationally increasing phenomena that may also in case of a weaker Austrian welfare state endanger citizens. In the discussions, rather than deploying detailed images of GT, both affected and lay discussants developed generalized visions of GT as representative of broader biomedical and health policy trends. We identified four, not mutually exclusive approaches: In the first approach, voiced by a minority of affected and lay participants (and heavily challenged by others), GT was conceptualized as representative of a progressing medicine that offers information and treatment to the public. Testing was regarded as a must for the rational and responsible citizen because it offers a chance to detect and act upon future illnesses. For diseases for which treatment is currently unavailable, this group expressed trust that medical progress will eventually provide

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Structure of the codes used for quotations: The first two capital letters indicate the country (e.g., AT); after the underscore, the following two capital letters specify the technology (e.g., OT); and the next term marks the group as either affected (aff) or lay. The number given is the ATLAS.ti paragraph.  


 

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solutions. Whereas in the first approach the medical system was framed as expanding the opportunities of a patient, in all other approaches GT was conceptualized as diminishing personal options. In the second approach, participants regarded GT as representative of high-tech medicine, which develops tests only for the sake of technological advances. According to this technological rationale, GT does not, then, necessarily result in any tangible benefits for patients. Hence, participants were concerned that patients may be pushed into exaggerated medical interventions if medical actors convince patients that “gene technology is the universal remedy [AT_GTlay:427],” while they sideline individual needs and alternative approaches. In the third approach discussants thought that GT represented a new style of public health wherein health care systems under financial pressure were conceptualized as relegating responsibility to individuals by exerting subtle social pressure and implying “that you [as patient] are asocial and somehow not socially responsible if you don’t make use of all kinds of examinations [AT_GTaff:141].” Hence discussants criticized preventive tests for providing only encumbering risk information and for stigmatizing individuals for the sake of potentially lowering health care costs. Subsequent medical treatment or guidance was largely seen as lacking. In the fourth approach, discussants expressed a view that GT is intrinsically economically motivated. They stated that the true “intention behind developing and generating genetic testing is not altruism or any other idealistic good,” but that the true motivations are ensconced in “tangible and material interests.” [AT_GTlay:769] This was seen as likely leading to surveillance and discrimination. Throughout the discussions, participants framed the development of GT as following the logic of international developments that enter the Austrian context from outside. GT was mostly seen as driven by an opaque network of international scientific and economic actors leaving the state to play only a marginal role and thus hardly able to counteract or prevent negative social consequences. Comparing the discussion of the two technologies within the Austrian technopolitical culture, shows that they were conceptualized in fundamentally different ways. OT was debated as a “value-free technology” strongly demarcated from its social context and the value-related issues arising in its implementation. GT was portrayed as being framed by a more systemic rationale seen as an inseparable part of the technology. Furthermore, whereas the systemic dimension of OT was seen as confined to the Austrian donation system, GT was referred to as an exemplification of trends in a partially globalized medical system. As such, the technology was seen as inextricably linked to the interests of specific actors. This caused some unease most probably because it rendered the idealized separation between technologies and values impossible. Also, the political frames of reference differed significantly. Whereas OT was conceptualized as a technology functioning and regulated within a national context, GT was discussed as being part of a global dynamic, hardly governable by national efforts. However, the discussions about both technologies converged in that individual agency was often seen as being shaped by supra-individual rationales, be they the opaque medicalizing logics of GT or the patronizing actions of the strong state in OT.


 

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The ability to influence these supra-individual rationales seemed beyond the scope of individual possibilities.

Discussing Organ Transplantation and Genetic Testing in France In France organ transplantation was regulated by an objection solution comparable to Austria’s from the 1970s onwards. Public and political expectations in the technology were high, and the regulation was not a topic of public controversy. However, during the 1980s and early 1990s the French health care system was shaken by medical scandals that also affected OT and forced the state to change its regulatory style. Whereas regulation had previously been based on self-regulation and soft laws, comprehensive bioethics laws were subsequently adopted, which comprised both a regulation of GT and transplantation. Although the new laws are still based upon the objection model, the state is now legally required to inform the public about the transplantation system, to consult relatives in case of a brain death, and to respect their decision (Chavot et al., 2001). Despite public awareness campaigns, this change of regulation led to a decline in grafts. Consequently, the new regulation is assessed ambivalently by patient organizations, which are highly engaged to counteract the problem of organ scarcity. In the French focus groups both lay and affected participants framed OT as a medical system based on solidarity as a shared collective value, which is threatened by organ scarcity and commercialization. However, reflections on how to address these threats were quite diverse. For affected participants, organ scarcity was the central problem. Hence, the issue of receiving an organ was not framed so much as an individual decision but as the only remaining option for the “lucky survivors” on a long waiting list. Because the affected group perceived transplantation medicine as an established medical technique whose technological efficiency may hardly be increased anymore, the group focused predominantly on political solutions for the scarcity problem. They suggested changes on an administrative and legal level to optimize graft allocation and the identification of potential donors. However, participants regarded these structural suggestions as insufficient and strongly pleaded for raising public awareness of the scarcity problem and for promoting the solidarity idea. Scarcity was an issue in the lay group as well, where it was linked to the fear that the transplantation system could be infiltrated by the rationale of commercialization, whereby patients willing to pay would be ranked higher on the waiting list. Hence, for organ donation to “remain a gift,” lay participants pleaded for “transparency campaigns, to know how it [organ allocation] is carried out and that there is no money involved [FR_OTlay:665].” Governmental actors were expected to play a key role in this issue. Both lay and affected groups perceived donation as an act of solidarity following a moral conviction. However, they argued that this personal conviction could be fostered only by “rationally” informing individual citizens. Particularly those in the affected group stressed that informing citizens should be done on a structural level because “those people who had received information early on are less likely to refuse [FR_OTaff:144].” Despite the groups’ agreement that the level of information should Dep ar t m ent of Soc ial St ud ies of Sc ienc e | Univer sit y of Vienna 2010

 

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be raised, the question about how to inform people was hotly debated. Predominantly affected speakers pleaded for keeping information “realistic, efficient, and pragmatic [FR_OTaff:73]” and for not exposing ethical and emotional problems too much, while the lay speakers rejected a selective information campaign and insisted on ”transparency [FR_OTlay:611]” towards the public. In discussing the legal regulation, the majority of the lay discussants rejected the idea to go back to the prior model because this would reduce transparency and, consequently, open back doors for “shady deals [FR_OTlay:773].” Affected discussants, on the contrary, shared the view that the change of regulation has “stopped the law from being used the way it was intended” and now “blocks the donation system [FR_OTaff:64].” Hence, they pleaded for a return to the prior solution. However, both lay and affected groups essentially shared the belief that the dangers of commercialization could be kept at bay by transparent governmental regulation. In the French regulation of post-natal genetic testing, the state is obliged to guarantee the medical purpose of any form of GT. Suggesting a test to a patient is allowed only if a clear medical advantage or psychological relief is anticipated. The patient has to be offered non-directive counseling as well as medical and psychological after-care. Furthermore, any form of structural discrimination of people who are genetically at-risk is prohibited. The state cooperates with stakeholders in the enforcement of these regulations. For example, the state, in cooperation with patient organizations, has successfully fought the pharmaceutical industry’s efforts to patent genetic tests. Policy actors have repeatedly said that GT is a promising field for predictive medicine and have even suggested implementing national screening programs for certain forms of cancer. The public debate around genetic research and its societal implications is, however, rather marginal. The French focus groups predominantly linked GT to the broader health policy goal of prevention. However, the two groups did not share the same assessment of preventive possibilities. Affected participants framed genetic tests not only as an option for acting now to avoid certain genetic diseases in the future, but also as a way to “lift the taboo,” “detect persons at risk,” and consequently “raise the level of treatment [FR_GTaff:294].” Lay participants showed more ambivalent feelings as they tried to balance the “prevention of the various diseases that could affect us [FR_GTlay:055]” with the lack of “real important therapeutic benefit in being tested [FR_GTlay:424].” In discussing the personal consequences of GT, both affected and lay groups expressed awareness for the potential emotional burden that accompany the risk information offered by probabilistic tests. However, they regarded the task of dealing with these risk assessments as mainly a personal challenge and not so much as a societal problem. Yet, they framed the refusal of an individual to take advantage of these technological possibilities as problematic and as an impediment to medical progress. The following quotation shows the tension between prevention as a collective value and the individual willingness to deal with the information: Without identifying ill people or those who carry a genetic disposition for a disease, we cannot make progress. So, on the one hand, it would be good to know. […] But on the other hand, I would not want to know because it is in my nature to be anxious, so I don't think I could survive all the bad news …” [FR_GTaff:85].


 

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Participants considered the protection of preventive GT against commercialization as primarily a regulatory issue. Economically driven research should be strictly regulated in order to avoid research goals being selected according to expected profit. Also, the participants addressed the threats of labor market and insurance company discrimination based on genetic testing as “Orwellian or Kafkaesque [FR_GTlay:803]” visions. However, they expressed a strong belief that such intrusions by economic actors into the health-policy domain could in principle be prevented by fine-grained regulation. Affected participants demonstrated their high expectations and basic trust in “the legislator”, who, with the assistance of patient organizations, should guarantee “that all these genetic tests are useful, extremely supervised, and that any kind of drift is severely punished [FR_GTaff:513].” In the lay group, trust had not been restored in a state that had been involved in biomedical scandals and was still thought to be “subject to lobbies [FR_GTlay:859].” Lay participants saw it more beneficial to rely on other political actors to guarantee that the legislator’s actions accord with public will, such as “bioethics committees that are absolutely independent [FR_GTlay:847]”, or citizens’ initiatives. Hence both lay and affected participants conceptualized themselves as political actors, either as politically organized patients or via their political influence as citizens. Comparing the two technologies within the French techno-political culture, we see that both were perceived as collective medical efforts to attain a shared national goal – solidarity in the case of OT and public health through prevention in the case of GT. Decision-making in the context of these technologies was mostly not discussed as an individual matter but as related to a wider societal framework in which choice was often evaluated according to its conformity with the decision pathways implied by the collective rationale and morality. From the discussions of both technologies, the notion emerged that possible dangers and drifts could be kept at bay through national regulation. However, discussants thought that corruption and commercialization were more present in OT. Their assumption was probably related to past experiences with the scandals in the 1990s. In the case of GT such a collective memory of previous scandals did not exist. Rather, dangers such as economization and discrimination were envisioned as the intrusions of external rationales into the French territory.

Discussing Organ Transplantation and Genetic Testing in the Netherlands In the Netherlands organ transplantation was only regulated indirectly before drafting a comprehensive act in 1991. After more than seven years of political and public negotiation, the regulation was fully implemented. Organ donation is currently regulated as an “extended consent solution;” that is, explicit prior consent is necessary to consider a brain dead person as a donor. Every adult is asked to declare whether she or he registers as a donor, rejects a donation, or passes the decision on to a relative. In case of non-reply, the legal default is to follow the relatives’ choice. This regulation – and especially the high rejection rate in decisions taken by relatives – has led to a strong decrease in the number of available organs. Controversial public discussion around the regulation continues; however, suggested changes have so far not proven Dep ar t m ent of Soc ial St ud ies of Sc ienc e | Univer sit y of Vienna 2010

 

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politically feasible. Instead, scarcity is addressed by “smaller” solutions, such as campaigning to broaden information, softening the requirements for living donation, and implementing an open policy towards medical innovations, such as living liver transplantation. Organ scarcity, its causes and consequences were the central theme of discussion in both groups. In the scenario of receiving a transplant, affected participants described their own organ reception by framing their situation as a personal privilege to have survived long enough to receive an organ and not to have been one of the “200 people [on the waiting list] who die every year [NL_OTaff:69].” The lack of available organs was also discussed by the lay participants who pondered whether technological progress would bring a potential solution. However, lay group members expressed reservations with regard to ethically sensitive developments such as xenotransplantation. Lay discussants suspected that the current shortage will lead to a hidden commercialization, so they insisted on political guarantees that make OT innovations available not “just for people with money [NL_OTlay:42].” When discussing the scenario of deciding to become a donor, Dutch donation policy became the center of critical reflection. Both affected and lay participants were aware that the current regulation contributes to scarcity and regarded an increase of public information as necessary. Alternative regulations were seen as controversial, but they implicitly agreed that any solution would have to comply with three basic values: adequate information, free choice, and common welfare. Most affected and a few lay discussants adopted a rather pragmatic “reading” of these three values. First, they accepted that public information was mainly promotional. Second, they proposed an extended objection model, but they argued that freedom of decision also exists in this model “the moment one sends back the objection form [NL_OTaff:624].” Third, they also argued that giving preference to registered donors on the waiting list was fair because they considered it “antisocial when someone says they would like to receive but not to give [NL_OTaff:215].” On the contrary, the majority of lay and some affected participants stressed that only balanced information was adequate. They stated that the value of free choice also extended to choosing whether one wants to make a decision at all or opts to remain in “deliberate ignorance.” Finally, the common welfare was regarded as dependent on a “balanced system, in which everybody has the same rights [NL_OTlay:683],” which was seen as being “typically Dutch [NL_OTlay:684]”. When discussing the “releasing of a brain dead relative,” affected participants were critical of the procedure of passing the donation decision to a relative because “80% of the people [relatives] just say ‘no’ is such cases” [NL_OTaff:144].” Lay participants were more ambivalent; they saw this procedure as a problematic aspect of the current regulation, but they diverged on how they personally would decide. In the final scenario–that of dealing with the decision to become a living donor– , participants insisted that free choice had to be guaranteed by all means. However, affected discussants reported personal experiences in which the individual decision was challenged by strong pressure from the medical establishment: “Physicians are looking over your shoulder to see whether you brought someone... [NL_OTaff:435].” So, both affected and lay groups identified scarcity as a central problem. They discussed new technological options, such as living liver donations, not only as opporDep ar t m ent of Soc ial St ud ies of Sc ienc e | Univer sit y of Vienna 2010

 

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tunities but also as burdens that “people actually don’t want but feel they should [use] because of the long waiting list [NL_OTaff:470].” Although the participants regarded technological progress as a partial solution to the problem of scarcity, they also viewed it as a burden for the individual. In the Dutch context post-natal genetic testing was framed by high governmental and public expectations in the future progress of biomedical genetics. Screening programs on neo- and post-natal levels were initiated, and cost coverage for testing has been guaranteed by social security. However, at the end of the 1980s the public image of predictive medical testing was severely shaken when insurance companies decided that HIV-tested persons were “non-insurable”. In the second half of the 1990s a regulatory framework for biomedical genetics was created (Aarts et al., 2001). Fundamental patient rights such as informed consent and data privacy, were to be guaranteed. Principles of non-directive counseling and free disposal of information were not, however, regulated explicitly. Also limits for life and disablement insurance were agreed upon, that disallowed the exclusion of individuals due to their genetic constitution. Employers may request a test only if a genetic condition is directly relevant to the employment profile of the potential jobholder. Because these regulations have imposed far-reaching restrictions for genetically tested individuals and as the high expectations for GT have deflated over the years, the initially positive public image of genetics has faded, and although major controversies are lacking, the media and public discourses are rather reserved. The Dutch discussants shared a general lack of confidence in future progress in the field of biomedical genetics in general and in genetic tests in particular because of the current lack of opportunities for preventive actions in the case of positive results. Hence, any further identification of genetic predispositions was rejected as of “no use [NL_GTaff: 65],” because GT would only widen the gap between risk knowledge and effective risk prevention. Also, in the discussion of established forms of GT, affected and lay discussants shared a reserved standpoint. They differentiated between specific forms of testing as separate technological fields, each providing different information and entailing different dilemmas for decision-making for the individual patient. Regarding the probabilistic information offered by tests for multi-factorial genetic diseases, participants considered the availability of subsequent preventive or therapeutic measures as crucial for making the choice to do the test. Preventive opportunities were recognized in breast-cancer screening but not for many other types of hereditary cancer. Participants perceived mono-factorial genetic tests, which deliver a “secure” diagnosis of a future incurable disease, as inducing completely different challenges to personal decision-making. For a number of discussants the genetic determination of a disease that lacks any cure was regarded as useless and only encumbering for the tested person. Other discussants rejected this interpretation and indicated a clear preventive benefit – that of being able to consider the information in further family planning. The issue of birth control was highly controversial, and in the end participants concluded that in such morally highly challenging decisions an individual should draw his or her very “own limits [NL_GTaff:607].” In the discussion of the socio-political consequences for genetically tested persons, affected participants’ personal stories drastically highlighted labor market and insurance discrimination as everyday phenomena. In a vivid exchange about strategies to minimize structural disadvantages, participants recommended getting “insured the Dep ar t m ent of Soc ial St ud ies of Sc ienc e | Univer sit y of Vienna 2010

 

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day before receiving the test result [NL_GTaff:747]” or keeping one’s own genetic condition secret. However, they did not consider finding ways to change the current regulation. This response from affected participants indicated that they obviously regarded the current situation as a non-renegotiable compromise. Concrete opportunities for interventions by patient groups were only identified for the field of counseling and especially in raising public awareness. In the lay group, labor market and insurance discrimination of genetically tested persons was considered from a more structural view; that is, the group implicitly agreed that the question was no longer whether, but how one must deal with discrimination. While some supported the idea of a continuous process of negotiation between different interest groups as part of the deliberative governance culture performed in the Netherlands, others pleaded for “determining a clear policy beforehand [NL_GTlay:484].” A comparison of participants’ views of the two technologies within the Dutch techno-political culture revealed very different approaches. In discussing OT, participants started by identifying one central structural problem – scarcity – and then referred to it throughout all the scenarios. In contrast to this systemic view, they discussed GT as an issue of decision-making, specifically connected to a type of test and disease, which they then only selectively related to a broader picture. Discussants also argued that the technology’s possibilities and limits are connected to specific applications, so they further differentiated between distinct, single GT technologies. Both discussion groups shared a focus on a strong central value: selfdetermination in individual decision-making, although they related this central value to the two technologies in very different ways. In the case of OT they discussed individual self-determination as being in conflict with the potential efficiency of the technology; in other words, just as the current regulation aims to maximize selfdetermination, the regulation simultaneously maximizes the possibility to reject making donations. Participants conceptualized GT as being more in line with selfdetermined choice, albeit with certain ambivalence because self-determination seemed constantly challenged by collective implications and effects from the information produced. The groups also viewed technological progress very differently. Whereas for OT they hoped that technological advances would alleviate the tensions within the current system, they viewed progress in GT methods critically, given the lack of treatment opportunities.

Relating the Technological to the Social For our first comparative perspective, we trace how biomedical technology is imagined in the respective countries and how it is positioned in relation to the social. For Austria, as different as the imaginations of OT and GT were, participants shared the obvious strain and difficulty in forming a coherent picture of each technology. In discussing OT, participants’ lack of a coherent view is due to the strong fragmentation of seemingly unrelated imaginations about the technology as shown in different decision-making scenarios that oscillated between linear and context-free visions surrounding organ receptions and the rather systemic discussion around donation. In discussing GT, coherence was lacking because of the vagueness and opaqueness of the Dep ar t m ent of Soc ial St ud ies of Sc ienc e | Univer sit y of Vienna 2010

 

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technology which seemed very difficult to pin down concretely. Hence, the participants discussed GT in the context of broader health policy trends. Furthermore, we can identify a strong basic conviction among Austrian participants that, ideally, technology should develop independently of external contexts and according to its own intrinsic rationale, which is ever-increasing technological perfection. On the one hand this idealized, de-contextualized technology-advancement vision triggered broader imaginations of progress; but on the other hand decontextualized advancement poses a constant danger of “going too far,” or of expanding options for the sake of mere do-ability without considering societal values. Yet, participants hold that at its best, technology should be “value-free.” This may be seen in the rigid separation they make discursively not only between the opportunities offered by OT itself and its societal implementation, but also for GT where the contextfree ideal is seen as possible but often violated. In the case of GT, the progress of the technology is perceived as being closely intertwined with the interests of economic actors, which participants interpret as a corruption of medical intent. Both participants’ lack of a coherent view regarding OT and GT and their idealized vision of context-free technological advances may be related to the virtual absence of public debate (especially compared with the other countries) on technological issues in Austria, particularly in its media. The resulting lack of shared cultural models for discussing technology in a fine-grained, balanced, and critical manner may explain why the participants struggled so much to find coherent ways to frame the technologies. This may also partially explain why the two technologies were framed so differently. In the media, stories on technology are often reduced to very general narratives of success and progress and to cherishing Austrian technological achievements and their champions, while risks and dangers are discursively allocated to threats from “the outside”. This maps with the different ways in which OT and GT were discussed. OT, on one hand, was framed as a nationally established technology with potential problems, such as organ shortage or organ trade, taking place “elsewhere.” The implementation of GT, on the other hand, was conceptualized as an opaque and uncontrollable intrusion of global forces. In France, the relationship between technology and public values plays out very differently. Both technologies are seen as intrinsically connected to achieving shared public goals and values, which are solidarity-based health care for OT and public prevention for GT. Technologies are thus discussed as means for implementing and raising public values and for engineering visions of social life. This strongly differs from the dominant Austrian ideal of “value-free” technology. The idea that technologies are means to realizing common societal values and are thus supported by individual actors also lends coherence to the way technology is imagined in the French context. The overarching idea of having a common socio-technical goal allows for seamless transitions between discussing personal decision-making and more systemic issues. If donating a relative’s organ is an act of “national solidarity,” then a systemic view becomes part of any particular individual decision. This strong presence of collective values may be related to the quite active information policy in the biomedical domain in which different versions of solidarity play a central role. Compared to Austria, France has a tradition of intense public debate about and critique of technologies. The differences we have reported between focus groups in both countries may be seen as related to these different histories of critique. For OT, Dep ar t m ent of Soc ial St ud ies of Sc ienc e | Univer sit y of Vienna 2010

 

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on the one hand, trust in the ability and efficiency of the socio-technical system had to be re-established after a history of scandals. GT, on the other hand, does not have such a history. As a relatively new technology, the co-construction of technological opportunities and social values still seems in play, and presumed threats are imagined as future possibilities rather than known challenges from past experience. In the Netherlands, the way participants imagine the two technologies is strongly tied to a focus on concrete problems. Unlike in Austria, these foci on specific aspects are not fragmented or unrelated, but are rather guided by a detailed knowledge of the respective technologies and their implications. Participants not only “zoomed in” on certain specifics, but also related the specificities of these aspects to each other, such as the different forms of GT. The focal point of these discussions was often individual decision-making and the role of self-determination. Technology was often addressed as a means for solving particular societal problems. Thus, as in France, technology is seen as a means to achieving societal goals, but in the Dutch discussions, resolving particular issues took precedence over establishing shared values. Their focus on resolving issues relates to the wider political and technological culture in the Netherlands. The term “polder politics” aptly describes Dutch political culture with its emphasis on consensus, and it conveys the idea that science and technology play a role in localized problem solutions (Bijker, 2002). In discussions of the two technologies in the Netherlands, two factors dominated: technological innovation and individual self-determination. How these factors figure into the technologies, however, is different in each case. In OT, technological options and self-determination stand in an uneasy relationship: The technological potential to transfer organs is constrained by the necessity to guarantee the value of a self-determined decision to donate. To “work around” this conflict, Dutch participants hope (although with some ambivalence) for other technological innovations. The imagination of GT shows a predominance of self-determined decision-making. However, a closer look reveals that self-determination is constantly undermined by the collective implications and the effects of the information produced.

Perceptions of Regulatory Frameworks and Their Relationship to Technology In a second comparative dimension, we analyze the participants’ perceptions of the relationship between the technologies and the institutional frameworks of governing. In Austria regulatory contexts were perceived differently for the two technologies. For OT the state appeared as a sovereign actor to guarantee the current implementation procedures and to protect the practices from “external” threats. For GT, participants described classical regulatory structures as powerless and the state as only one actor among many in a globalized governance dynamic linked to economization, surveillance, and discrimination. In both images of governance, however, the public plays a minor role. While in OT the public’s role is to remain ignorant of its potential influence and to be excluded from active participation in decision-making so as to assure the functionality of the system, in GT its role is that of a malleable actor shaped by different interests. However, both technologies share a lack of cultural reference points for dealing with issues of governing technology. This is most likely due Dep ar t m ent of Soc ial St ud ies of Sc ienc e | Univer sit y of Vienna 2010

 

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to the fact that, until recently, Austria did not have any clearly stated technology policy and there was little open discussion of such issues. In France, the image of the state and regulatory institutions is more homogeneous across the two technologies: the state is seen as an important central actor that is able and expected to define, promote, and protect shared common values in each technological domain. The trust in central regulation is conditional, however, due to the number of scandals that shook the biomedical domain in the past and to new global challenges to public health such as privatization and commercialization. To achieve its goals, the state needs to be both supported and kept under surveillance by other actors, especially by the public, which plays a key role in the French vision of governance. For OT with its history of prior scandals, the aspect of public surveillance is stressed more strongly. For GT the state is instead regarded as in need of support not because of the danger of corruption from within, but because of the scope of external dangers. As in Austria, citizens wish for a strong state, but with a crucial difference, in France the state may only be strong because of the support of its citizens – while the Austrian state was rather conceptualized as being strong because of the public’s ignorance or silence. Linking these observations to French techno-political culture (Hecht, 2000), it is tempting to describe this specific approach to governance as “participatory technocracy.” Societal values and goals are realized through technological means in a collective endeavor by the state and its citizens, which recalls traditional feelings of pride rehearsed in memory practices of French technological achievements. In the Dutch discussions the state is hardly ever conceptualized as a provider of a priori political solutions, but rather as a mediator for balancing different societal interests and as a guarantor of basic individual rights. Instead of defining common sociotechnical goals as in the French case, the state is seen as offering technological opportunities to its citizens who may then make self-determined individual decisions. Also the governance process itself is not conceptualized as a top-down effort, but rather as a constant negotiation between different societal actors on a particular regulatory problem. For example, different actors such as insurance companies or patient groups are seen as key actors in defining regulations for GT. Due to the negotiated character of these regulations, they are often seen as the “least common denominator” in a pluralist society. The general emphasis on a negotiation of different societal interests in Dutch political culture echoes in the description of governance in the biomedical domain. Although in principle they welcome such a culture of negotiation, participants partly perceive the effective outcome of such least common denominators as unsatisfactory. In the case of OT participants see the current regulation – though morally favorable – as highly inefficient, and hence they hope that technological progress will bypass the problems caused by social deadlock. In the case of GT the negotiated character of the current governance is seen as the cause of the current precarious situation for individuals genetically at risk.

Relating Individual and Collective Agencies In our third comparative dimension we analyze the ways in which individual and collective agencies are imagined and interrelated in the three contexts. In the Austrian discussions, individual and collective forms of agency for the two respective technologies are virtually unconnected. Neither the public nor any societal group is Dep ar t m ent of Soc ial St ud ies of Sc ienc e | Univer sit y of Vienna 2010

 

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described as an agent in the sense of an entity performing self-determined actions. If at all, the public is depicted only as a weak, ignorant, and malleable actor. Rather, supra-individual agencies play a dominant role in shaping individual possibilities for action. For OT, the state plays the role of the supra-individual agency by shaping the practice of OT in secrecy. For GT, opaque global forces supplant or direct the polity’s agency. The shaping of individual agency by supra-individual rationales, the inability to imagine effective collective agency, and the fundamental ambivalence towards results coming from top-down government may be related to Austrian political culture and history, with its propensity to take decisions in a top-down manner. The results of these decision-making processes, however, are met with a very specific cultural ambivalence in which citizens simultaneously accept regulations and use what is beneficial, while at the same time lamenting their exclusion from the decision-making process – however without taking any action. In the French discussions we observe that individual and collective agencies are inseparably intertwined. Personal actions and their benefits are mostly seen as in line with collective values and goals, and thus they may also contribute to the achievement of common socio-technical endeavors. Conversely, the achievement of these goals through collective forms of agency is thought to rely on support by individual actions. This co-construction of individual and collective agency not only as a rational strategy but also as a moral attitude, can be regarded as rooted in French national tradition as “la grande nation,” which expresses the idea of “l’état, c’est nous” (we are the state). This tradition has two implications that were elucidated in our focus groups: (1) that the public has strong expectations and a basic trust in the French nation to be a powerful actor capable of managing its fate, and (2) that they maintain a conviction that the state’s strength persists only as long as every individual contributes to it (by both supporting the state and constantly keeping a critical eye on its actual conduct). In this relationship between the public and the state, technology becomes a mediator, a kind of “social glue” between individual and collective agencies and between the state and its citizens. In the Netherlands, individual, self-determined agency is at the center of discussions both as a key to personal decision-making and as a political value. Selfdetermination is also seen as a central goal in governing OT and GT. Collective agency, as debated in the Dutch focus groups, does not comprise the entire nation as in France, or any notion of a collective “public.” Rather they envision multiple collectivities linked to the interests and voices of specific actors, such as patient groups, insurers, or employers. The crucial point in Dutch focus groups is that the implicit cultural assumption of cooperative co-existence and constant negotiation among different collective agencies shapes individual decision-making. The groups further elucidated elements that correspond to the specifics of Dutch political culture: they focused on individual choice and the non-prominence of the idea of a Dutch “public” or “nation” as a collective actor, and they emphasized negotiation between different particular collective agencies. Hence, they see themselves operating in a pluralist society that strongly depends on the negotiation of heterogeneous standpoints.


 

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Conclusion What can we learn from observing the way our focus group participants in three different national contexts managed to come to terms with the two selected biomedical technologies? What do our results imply in the context of the political effort of building common European values? Our central observation is that there are fundamentally different ways biomedical technologies are inscribed into society. Although these technologies seem to pose similar, basic challenges, such as the danger of genetic discrimination or an unfair allocation of organs, the ways in which the challenges were addressed and assessed differed substantially across nations. Hence the discussions gave a glimpse into the complex ways in which the respective technologies have been inscribed into and have blended with techno-political cultures in the different national contexts. These processes of inscription are understood as the central mechanism for coming to terms with new technologies that intrude as deeply into individual and collective lives as biomedical technologies do. For Austria we see that inscribing a technology into society means measuring it against the ideal of a value- and context-free technology model and trying to resolve the discrepancy between the perceived reality and this ideal. Any technological script, then, needs to fit with the expected model for technology, or it runs the danger of being rejected. Conversely, in the French case technologies are explicitly conceptualized as transformation devices that realize common societal values and are thus to be supported by individual actors. In the case of France, then, technology is understood in the Latourian sense as “making society durable.” In the Dutch context inscribing technology occurs in context-sensitive ways that focus on specific problems to be solved more than on the relationship of technology more generally speaking with society. We have also observed that inscription is closely related to how governance and regulatory capacities are perceived. Our hypothesis (to be explored further) is that citizens’ experiences with policy in general, and technology policy in particular, play a crucial role in shaping how creatively they envision their position in relation to technology. We noted that whereas global forces sometimes entered the discussions, we had hardly any references to Europe as a political or value-defining entity that could or should play a role in governing biomedical issues. Rather, participants conceptualized the basis for experiences and expectations regarding governance in terms of nationstates. In the case of Austria, we observed that participants seem to lack cultural frameworks or reference points to assess whether they could trust governance in a particular technological setting. Participants seem to trust the state intuitively as long as they perceive the technology to be “local” and “classical” (OT), but in more complex settings (in the case of GT) they exhibit less faith in governance aims (Felt et al., 2008). In the French case participants resort to a strongly developed technological culture, which offers a terminology that interconnects the social and the technological. As a mediator state – as evident from the Dutch accounts – the Netherlands again opens up a completely different repertoire for discussing the governance of technologies. Coming to terms with technology also means finding a balance between possibilities and limitations on both individual and collective levels of action, as well as in their relationship to each other. Individual ways of coming to terms with biomedical technologies are framed by the broader context of a techno-political culture and by its Dep ar t m ent of Soc ial St ud ies of Sc ienc e | Univer sit y of Vienna 2010

 

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ways of understanding, narrating, and governing technologies in general and biomedical technologies in particular. Jasanoff (2005) calls these collective ways of knowing and political action in different national contexts “civic epistemologies.” We extend her point in arguing that these civic epistemologies are closely intertwined with citizens’ epistemologies, and that to position themselves in the focus group, participants drew from these more personalized epistemologies. The way people argue their rather personal ways of coming to terms with these two technologies is thus to be understood as being shaped by (but also as shaping) a larger frame of civic epistemologies that have been constructed over time and are distilled from multiple encounters and experiences with technology. The precise forms of this co-articulation are open to further investigation. An analysis of cultural differences is at the core of this project. However, because of our study’s methodological difficulties in addressing cultural minorities, the study may seem to disregard some areas of cultural diversity within the states for the sake of making a comparative argument between nations. Cultural boundaries will in many cases not be congruent with national borders. Furthermore, trans-national mobility – a central value within the European Union – puts cultural boundaries in constant flux. However our argument here is that national frameworks have specific relevance for addressing techno-political culture, which we conceptualize as being strongly framed by the way nations were created and developed and by the role technology plays in this. Of course, we recommend further work using methods more sensitive to crosscultural differences within nations; other methods may add valuable insights that complement to the approach taken in this project. The project shows, however, that even though common European regulations may be developed as part of the harmonization effort, the issue of diverse technopolitical cultures these regulations would have to meet and in which they would have to be inscribed remains the real challenge. With reference to Jasanoff’s argument, that „the ways in which we know and represent the world (both nature and society) are inseparable from the ways in which we choose to live in it“ (Jasanoff 2004, 2-3), we conclude that to understand what regulation and harmonization can mean for Europe in the biomedical field and to identify the challenges ahead, we must first acknowledge the complex interplay of biomedical technologies and techno-political cultures.

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