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)

With the recent Clinical Trials Directive, a degree of harmonisation into research ethics committees across Europe, including the time taken to assess a trial proposal and the kinds of issues a committee should take into account, has been introduced by the European Union . How four different member states—Hungary, Portugal, Sweden and the UK—have chosen to implement the directive is shown. Although this has resulted in four very different ways of structuring RECs, similar themes are present in all four cases, (...) such as centralisation of control over RECs within member states, harmonisation of REC procedures across the EU and increased role of political decision making with regard to such committees. (shrink)

This article explores the way in which social explanations underpin the names of particular disciplines. Taking the example of pharmacogenomics, it shows how this term has been constructed since it appeared in 1997, the differences and similarities between it and its precursor, pharmacogenetics, and the way in which commercial interests underpin this new term. Drawing on the idea of visions and the sociology of expectation, the article shows how different actors compete to have their preferred definitions of the term accepted (...) by the world at large. (shrink)

This paper explores how a particular form of regulation—prior ethical review of research—developed over time in a specific context, testing the claims of standard explanations for such change against more recent theoretical approaches to institutional changes, which emphasize the role of gradual change. To makes its case, this paper draws on archival and interview material focusing on the research ethics review system in the UK National Health Service. Key insights center on the minimal role scandals play in shaping changes in (...) this regulatory setting and how these depend upon the absence of a single coherent profession associated with biomedical research. (shrink)

Most of the literature on pharmacogenetics assumes that the main problems in implementing the technology will be institutional ones (due to funding or regulation) and that although it involves genetic testing, the ethical issues involved in pharmacogenetics are different from, even less than, ‘traditional’ genetic testing. Very little attention has been paid to how clinicians will accept this technology, their attitudes towards it and how it will affect clinical practice. -/- This paper presents results from interviews with clinicians who are (...) beginning to use pharmacogenetics and explores how they view the ethics of pharmacogenetic testing, its use to exclude some patients from treatment, and how this kind of testing fits into broader debates around genetics. In particular this paper examines the attitudes of breast cancer and Alzheimer’s disease specialists. The results of these interviews will be compared with the picture of pharmacogenetics painted in the published literature, as a way of rooting this somewhat speculative writing in clinical practice. -/- . (shrink)

Most of the literature on pharmacogenetics assumes that the main problems in implementing the technology will be institutional ones and that although it involves genetic testing, the ethical issues involved in pharmacogenetics are different from, even less than, ‘traditional’ genetic testing. Very little attention has been paid to how clinicians will accept this technology, their attitudes towards it and how it will affect clinical practice.This paper presents results from interviews with clinicians who are beginning to use pharmacogenetics and explores how (...) they view the ethics of pharmacogenetic testing, its use to exclude some patients from treatment, and how this kind of testing fits into broader debates around genetics. In particular this paper examines the attitudes of breast cancer and Alzheimer’s disease specialists. The results of these interviews will be compared with the picture of pharmacogenetics painted in the published literature, as a way of rooting this somewhat speculative writing in clinical practice. (shrink)

This paper is a response to Henk ten Have's Genetics and Culture: The Geneticization thesis . In it, I refute Ten Have's suggestion that geneticization is not the sort of process that can be measured and commented on in terms of empirical evidence,even if he is correct in suggesting that it should be seen as part of ‘philosophical discourse’. At the end, I relate this discussion to broader debates within bioethics between the social science and philosophy, and suggest the need (...) for philosophical approaches to take the social sciences seriously. (shrink)

In this interesting and stimulating collection, Mark Rothstein has brought together authors from a number of different disciplines to explore some of the issues surrounding pharmacogenomics: the use of genetic testing to design new drugs, and to prescribe more effectively the drugs we already have. Pharmacogenomics is an area of fevered speculation on the part of biotechnology firms and large pharmaceutical companies. Their hope is that by targeting drugs at specific populations, industry will be able to develop new products more (...) quickly, more cheaply, and with less risk of marketing something that actually kills the patient. An often cited study by Lazarou, Pomeranz, and Corey suggests that adverse drugs reactions are between the fourth and the sixth biggest causes of death in US hospitals.1As someone very familiar with the scientific and ethical literature on pharmacogenomics, I did find that a number of chapters in this collection simply rehearsed arguments that have been made elsewhere, sometimes by the same authors. Rather than seeing these as “fillers”, however, I think it is better to regard them as providing a sound introduction to the current state of …. (shrink)

The prelims comprise: Introduction Commerce, Ethics, and Science: Gene Sequencing Commercial Marketing of Genetic Tests Conclusion.

Since the inception of the Human Genome Project, human genetics has frequently been conducted through big science projects, combining academic, state and industrial methods, interests and resources. The legitimacy of such projects has been linked to national prestige and images of the nation, the purity of scientific endeavour, the entrepreneurial spirit, medical progress and the public health. A key complication in these discourses is that large-scale genetic research has yet to show major results when considered in terms of the objectives (...) used to legitimate investment and social support for these projects. The main area showing promise at present is the developing field of pharmacogenetics, which is now attracting major industry and government investment. Sociological, ethical and philosophical study of human genetic sample-based research and pharmacogenetics has developed in parallel with inquiry in the biological and biomedical sciences. This paper introduces a symposium on the ethical and social aspects of this field of biomedical research. (shrink)

Since the inception of the Human Genome Project, human genetics has frequently been conducted through big science projects, combining academic, state and industrial methods, interests and resources. The legitimacy of such projects has been linked to national prestige and images of the nation, the purity of scientific endeavour, the entrepreneurial spirit, medical progress and the public health. A key complication in these discourses is that large-scale genetic research has yet to show major results when considered in terms of the objectives (...) used to legitimate investment and social support for these projects. The main area showing promise at present is the developing field of pharmacogenetics, which is now attracting major industry and government investment. Sociological, ethical and philosophical study of human genetic sample-based research and pharmacogenetics has developed in parallel with inquiry in the biological and biomedical sciences. This paper introduces a symposium on the ethical and social aspects of this field of biomedical research. (shrink)