This paper discusses the discourse of ‘participation’ in the context of genetic databases. Focusing on UK Biobank, it suggests that this discourse can be seen as a reflexive institutional response to public ambivalence towards science and expertise. Drawing on empirical evidence from focus groups, I explore how people from various backgrounds constructed and contested two different kinds of participation in UK Biobank. The first relates to people providing research materials to genetic databases and the second to people becoming ‘co-decision makers’ (...) in these projects. My analysis highlights how focus groups positioned themselves and others in relation to UK Biobank and drew on a variety of ‘discursive repertoires’, such as altruism, public ignorance, expertise, and lay empowerment. I conclude that discourses of participation reflect the way people position themselves and others - as experts, publics, patients, or research subjects - in relation to the opportunities and uncertainties of new biomedical research. (shrink)

This article explores contemporary biopolitics in the light of Michel Foucault's oft quoted suggestion that contemporary politics calls `life itself' into question. It suggests that recent developments in the life sciences, biomedicine and biotechnology can usefully be analysed along three dimensions. The first concerns logics of control - for contemporary biopolitics is risk politics. The second concerns the regime of truth in the life sciences - for contemporary biopolitics is molecular politics. The third concerns technologies of the self - for (...) contemporary biopolitics is ethopolitics. The article suggests that, in these events, human beings have become `somatic individuals': personhood is increasingly being defined in terms of corporeality, and new and direct relations are established between our biology and our conduct. At the same time, this somatic and corporeal individuality has become opened up to choice, prudence and responsibility, to experimentation, to contestation and so to a politics of `life itself'. (shrink)

In 1986, philosopher-bioethicist Samuel Gorovitz published an essay entitled “Baiting Bioethics,” in which he reported on various criticisms of bioethics that were “in print, or voiced in and around … the field” at that time, and set forth his assessment of their legitimacy. He gave detailed attention to what he judged to be the particularly fierce and “irresponsible attacks” on “the moral integrity” and soundness of bioethics contained in two papers: “Getting Ethics” by philosopher William Bennett and “Medical Morality Is (...) Not Bioethics,” coauthored by us. Gorovitz attributed some of the criticisms that bioethics was eliciting to the fact that this new, rapidly rising, and increasingly visible field had brought “scholars and practitioners together who otherwise would have little exposure to one another's disciplines. Their interactions are mutually enriching at times,” he declared, “but mutually baffling and even infuriating at other times.” In this latter regard, he suggested that “perhaps” Fox and Swazey's characterization of bioethics in the article he dissected “reflects a general revulsion at endeavors they see as inadequately like the social sciences or insufficiently respectful of them.” He went on to say that despite his objections to our “complaints” about bioethics—especially to our claim that “autonomy [had] been an unduly emphasized value” in the field—he had “a lingering sense” that there might be “a grain of truth” in them. Gorovitz ended his essay with an affirmation about the “benefit” that bioethics can derive from “responsible” and even from “irresponsible” criticism. “The unexamined discipline invites the philosopher's critical scrutiny no less than the unexamined life,” he aphoristically concluded. a. (shrink)

In the last few years, justice has emerged as a matter of concern for the contemporary constitution of technoscience. Increasingly, both practicing scientists and engineers and scholars of science and technology cite justice as an organizing theme of their work. In this essay, I consider why “science and justice” might be arising now. I then ask after the opportunities, but also the dangers, of this formation. By way of example, I explore the openings and exclusions created by the recent conjugation (...) of science and justice in the field of personal genomics. Finally, I conclude with reflections on what other forms “science and justice” might take, and what might be gained or lost in fostering them. (shrink)

This article discusses the notion of emergent concerned groups and explores how these groups contribute to shaping the relations between technoscience, politics, and economic markets. The first part presents the case of the French Association of patients suffering from muscular dystrophies. This history suggests that under certain conditions, emergent concerned groups are able to impose a new form of articulation between scientific research and political identities by directly linking the issues of research content and results to that of their place (...) in the collective. The second part argues that the evolution of economic markets, combined with that of science and technology, leads to a multiplication of those emergent concerned groups. The study of the conditions under which these emergent groups become legitimate stakeholders as well as the analysis of their impact on market organization and technoscientific institutions are key research topics for the near future. (shrink)

Background: Seeking consent for genetic and genomic research can be challenging, particularly in populations with low literacy levels, and in emergency situations. All of these factors were relevant to the MalariaGEN study of genetic factors influencing immune responses to malaria in northern rural Ghana. This study sought to identify issues arising in practice during the enrolment of paediatric cases with severe malaria and matched healthy controls into the MalariaGEN study. Methods: The study used a rapid assessment incorporating multiple qualitative methods (...) including in depth interviews, focus group discussions and observations of consent processes. Differences between verbal information provided during community engagement processes, and consent processes during the enrolment of cases and controls were identified, as well as the factors influencing the tailoring of such information. Results: MalariaGEN participants and field staff seeking consent were generally satisfied with their understanding of the project and were familiar with aspects of the study relating to malaria. Some genetic aspects of the study were also well understood. Participants and staff seeking consent were less aware of the methodologies employed during genomic research and their implications, such as the breadth of data generated and the potential for future secondary research.Moreover, trust in and previous experience with the Navrongo Health Research Centre which was conducting the research influenced beliefs about the benefits of participating in the MalariaGEN study and subsequent decision-making about research participation. Conclusions: It is important to recognise that some aspects of complex genomic research may be of less interest to and less well understood by research participants and that such gaps in understanding may not be entirely addressed by best practice in the design and conduct of consent processes. In such circumstances consideration needs to be given to additional protections for participants that may need to be implemented in such research, and how best to provide such protections.Capacity building for research ethics committees with limited familiarity with genetic and genomic research, and appropriate engagement with communities to elicit opinions of the ethical issues arising and acceptability of downstream uses of genome wide association data are likely to be important. (shrink)

ABSTRACT This article attempts to show a way in which social science research can contribute in a meaningful and equitable way to philosophical bioethics. It builds on the social science critique of bioethics present in the work of authors such as Renée Fox, Barry Hoffmaster and Charles Bosk, proposing the characteristics of a critical bioethics that would take social science seriously. The social science critique claims that traditional philosophical bioethics gives a dominant role to idealised, rational thought, and tends to (...) exclude social and cultural factors, relegating them to the status of irrelevancies. Another problem is the way in which bioethics assumes social reality divides down the same lines/categories as philosophical theories. Critical bioethics requires bioethicists to root their enquires in empirical research, to challenge theories using evidence, to be reflexive and to be sceptical about the claims of other bioethicists, scientists and clinicians. The aim is to produce a rigorous normative analysis of lived moral experience. (shrink)

This special issue of Science, Technology, & Human Values assembles papers that consider relations among science, ethics, and justice. The papers are drawn from a 2011 National Science Foundation-sponsored workshop that brought together interdisciplinary scholars to consider, incorporate, and attend to the meanings, uses, and social consequences of ethical questions and justice ideals in technoscientific projects. The papers included in this special issue examine key areas that emerged from this workshop, including public participation, the production of knowledge, what counts as (...) consent, ownership of biomaterials, and others. Together, the papers raise questions about new directions and articulations of power, justice, and inequalities in science and technology studies. (shrink)

Over the course of its first seven editions, Principles of Biomedical Ethics has proved to be, globally, the most widely used, authored work in biomedical ethics. It is unique in being a book in bioethics used in numerous disciplines for purposes of instruction in bioethics. Its framework of moral principles is authoritative for many professional associations and biomedical institutions-for instruction in both clinical ethics and research ethics. It has been widely used in several disciplines for purposes of teaching in the (...) classroom, during conferences, etc. (shrink)