In response to adverse events in retroviral gene therapy clinical trials conducted in France to correct for X-linked severe combined immune deficiency disorder (X-SCID), an advisory committee of the Food and Drug Administration convened in October 2002, February 2003, and March 2005, to deliberate and provide recommendations for similarly sponsored research in the United States. A similar National Institutes of Health committee met in February 2003. In this article, I review the transcripts and/or minutes of these meetings to evaluate the (...) extent to which the ethical dimension of the research was engaged even as the molecular and clinical evidence was reviewed. I then provide representative ethical arguments to demonstrate the sort of ethical reasoning that should be included as part of the agenda of such committee meetings. (shrink)

Universities are under increasing pressure to demonstrate the economic and social relevance of the research they produce. In the UK, for example, recent developments in the UK under the Research Excellence Framework (REF) suggest that future funding schemes will grant “significant additional recognition…where researchers build on excellent research to deliver demonstrable benefits to the economy, society, public policy, culture and quality of life” (HEFCE 2009 ). Having conceded that this and similar developments are likely to continue into the future, this (...) paper explores the problematic ethical terrain facing philosophers of education under increasing pressure to produce work that has unambiguous, demonstrable practical value on terms offered by various funding regimes. A preliminary ethics of relevance is developed through an examination of the debate between John Rawls and Jurgen Habermas on the relationship between philosophy, public policy and public reason. The paper then articulates and defends a principle of legitimate relevance . This principle is then applied to the case of directing disciplinary competence in philosophy of education for the educational policy process as a means to producing social and economic benefits. (shrink)

Biomedical research is an increasingly multidisciplinary activity bringing together a range of different academic fields and forms of expertise to investigate diseases that are increasingly understood to be complex and multifactorial. Recently the discipline of ethics has been starting to find a place in large-scale biomedical collaborations. In this article we draw from our experience of working with the Malaria Genomic Epidemiology Network and other research projects to reflect upon the integration of ethics into biomedical research. We examine the way (...) in which ethics input may be valuable to research, the forms it tends to take, and also the problems and limitations of such collaborations. (shrink)

This issue of the Journal of Medical covers a range of ethical issues and care settings making the task of beginning to summarise these papers challenging. They reflect the diversity of our field, representing different branches of bioethics focussing on specific areas or topics using a variety of methodologies: but how do we categorise these branches of bioethics? What demarks one branch from another? And what function do such categorisations fulfil? From the early days of medical ethics we now have (...) a growing proliferation of different branches, from those with a more specific focus: clinical ethics, global ethics, nursing ethics, public health ethics for example, to a widening out, in terms of bioethics becoming the broader usage and medical ethics sitting within that. More recently, a new area of ethical focus has arisen, One Health, the subject of Johnson and Degeling’s article in this issue. They define One Health as follows: ‘One Health is generally construed as an integrated approach to understanding and managing disease. Although primarily associated with the prevention and control of Emerging Infectious Diseases, the approach is also relevant to dealing with endemic and zoonotic animal diseases, as well as securing food safety. In its most comprehensive form, it extends to fostering the health of humans, animals and their shared environments.’ This raises, in many ways, a different set of ethical concerns from those usually encountered in bioethics and medical ethics and this leads Johnson and Degeling to ask whether One Health merits having its own ‘ethical framework’. They use ethical frameworks in two senses: as value neutral deliberative tools and as embodying values, and consider how each usage could be applied in One Health. In terms of the first usage they state: ‘When ethical frameworks are regarded as a procedural tool then, the One Health perspective can broaden …. (shrink)

This paper considers the roles and definitions of expert and lay members of ethics committees, focussing on those given by the National Research Ethics Service which is mandated to review all research conducted in National Health Service settings in the United Kingdom. It questions the absence of a specified position for the ‘professional ethicist’ and suggests that such individuals will often be lay members of ethics committees, their participation being a reflection of their academic interest and expertise. The absence of (...) a specified position for professional ethicists and the concomitant but implicit denial of ethical expertise appear to be an anomalous state of affairs if one considers that the training offered to members of ethics committees is often delivered by academic ethicists. It is suggested that this is based on a misunderstanding of the concept ‘ethical expertise’ and that properly understood the ethicist can assist the work of ethics committees by drawing on their expert knowledge. (shrink)