Science and Democracy in Europe and the United States Sheila Jasanoff. Lippmann, Walter. The Phantom Public. New Brunswick: Transaction Publishers, 1993 [1925]. Litfin, Karen . Ozone Discourses: Science and Politics in Global ...

The identification and valorization of unacknowledged, feminized forms of economic productivity has been an important task for feminist theory. In this article, we expand and rethink existing definitions of labour, in order to recognize the essential economic role women play in the stem cell and regenerative medicine industries, new fields of biomedical research that are rapidly expanding throughout the world. Women constitute the primary tissue donors in the new stem cell industries, which require high volumes of human embryos, oöcytes, foetal (...) tissue and umbilical cord blood. Such material is generally given for free in the advanced industrial democracies, constituted as a surplus (‘spare’ embryos) or waste (umbilical cord ‘afterbirth’, cadaveric foetuses, poor quality oöcytes) whose generative powers should not be withheld from others. At the same time, among impoverished female populations in developing nations, such biological material is now often procured through frankly transactional relations, where women undertake risky procedures for small fees. In each case, female bodily productivity is mobilized to support bioeconomic research, yet the economic value involved in these relations is largely unacknowledged. In this article, we consider both the gift economy and the transactional economy for reproductive tissues as a form of labour. In order to fully conceptualize the specificities of feminized productivity in the bioeconomy, we distinguish between earlier feminist theories of reproductive labour and the emerging practices generated by stem cell research, which we term regenerative labour. We consider how historical transformations in the regulation of feminized labour and the technical repertoires of stem cell research renegotiate the productivity limits of female reproductive biology, opening it out to novel and profitable forms of surplus value and enrolling women in complex negotiations over their role in bioeconomic activity. (shrink)

The concept of ‘geneticization’ has been introduced in the scholarly literature to describe the various interlocking and imperceptible mechanisms of interaction between medicine, genetics, society and culture. It is argued that Western culture currently is deeply involved in a process of geneticization. This process implies a redefinition of individuals in terms of DNA codes, a new language to describe and interpret human life and behavior in a genomic vocabulary of codes, blueprints, traits, dispositions, genetic mapping, and a gentechnological approach to (...) disease, health and the body. This article analyses the thesis of ‘geneticization’. Explaining the implications of the thesis, and discussing the critical refutations, it is argued that ‘geneticization’ primarily is a heuristic tool that can help to re-focus the moral debate on the implications of new genetic knowledge towards interpersonal relations, the power of medicine, the cultural context and social constraints, rather than emphasizing issues as personal autonomy and individual rights. (shrink)

Geneticization is a broad term referring to several related processes such as a spreading tendency to use a genetic model of disease explanation, a growing influence of genetics in medical practice, and the slow changing of individual and societal attitudes towards reproduction, prevention and control of disease. These processes can be demonstrated in medical literature on preventive genetic screening and counselling programs for β-thalassaemia in Cyprus, the United Kingdom and Canada. The preventive possibilities of the new genetic and diagnostic technologies (...) have been quickly understood and advocated by health professionals, and their educational strategies have created a web of social control, in marked contrast to the alleged voluntary decision-making process and free choice. Genetic diagnostic technologies have led to considerable changes in control and management of β-thalassaemia, and have generated a number of unresolved incongruities. (shrink)

In this article, we explore the institutional negotiation of public engagement in matters of science and technology. We take the example of the Science in Society dialogue program initiated by the UK’s Royal Society, but set this case within the wider experience of the public engagement activities of a range of charities, corporations, governmental departments, and scientific institutions. The novelty of the analysis lies in the linking of an account of the dialogue event and its outcomes to the values, practices, (...) and imperatives—the institutional rationality—of the commissioning organization. We argue that the often tacit institutional construction of scientific citizenship is a critical, and relatively undeveloped, element of analysis—one that offers considerable insight into the practice and democratic implications of engaging publics in science and science policy. We also present evidence indicating that over time the expanding ‘‘capacities’’ associated with dialogue can act in subtle ways to enroll other elements of institutional architectures into more reflexive modes of thinking and acting. In the concluding section of the article, we consider the ways in which research and practice could engage more squarely with facets of institutional context and culture. (shrink)

“Geneticization” is a term used to describe the ways in which the science of genetics is influencing society at large and medicine in particular; it has important implications for the process of diagnostics. Because genetic diagnostics produces knowledge about genetic disease and predisposition to disease, it is essentially influenced by these innovations in the disease concept. In this paper, I argue that genetic diagnostics presents new ethical challenges not because the diagnostic process or method in genetic diagnostics is ethically different (...) in kind from traditional medical diagnostics, but because it relies on a neo-ontological concept of disease in a context of genetic reductionism. Geneticization has not produced a radically new concept of disease, however, but has introduced innovations into the classical ontological concept of disease. When this new concept of disease is held in tandem with genetic reductionism, we are led to the absurd conclusion that disease is the very essence of the human being. I argue that neither the neo-ontological concept of disease nor genetic reductionism is necessary for a proper understanding of genetic diagnostics. (shrink)

In this comparative analysis of twelve focus groups conducted in Austria, France, and the Netherlands, we investigate how lay people come to terms with two biomedical technologies. Using the term ‘‘technopolitical 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 toward 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 toward the culturally embedded differences in coming to terms with biomedical technologies is needed. (shrink)

The paper by Susan M. Wolf and Jeffrey P. Kahn published in this issue of the Journal of Law, Medicine & Ethics notes that we are members of the Working Group on Genetic Testing in Disability Insurance and that the members of the Working Group do not necessarily subscribe to its recommendations. Although we agree with some of Wolf and Kahn's recommendations, we do not agree with recommendations 1, 3, 4, and 5 for individual disability insurance and recommendations 1, 2, (...) and 3 for group disability insurance. We use this paper to delineate our areas of disagreement, but we do not discuss areas such as employment law as they are not our areas of expertise.First, understanding our roles on the Working Group is important. As members, we provided technical expertise on disability insurance. Our input to the Working Group represents our individual opinions. (shrink)