In 1997, the Wellcome Trust Biomedical Ethics programme was launched in the UK, with a strategy that sought to encourage bioethics research that married normative philosophical bioethics and social science methodologies. This paper explores a few of the children of this marriage, particularly those approaches that have been taken in an attempt to make this interdisciplinary marriage a happy one. We suggest that the dominant discourse has involved social science for bioethics, and sociology of bioethics, and we suggest further that neither of these approaches represent a happy and equal marriage. We then outline a third approach: social science in bioethics. Drawing upon our experiences of conducting such a project we describe the broad methodological approach that we have taken, and outline how, and why, this approach might be productive.
KEYWORDS: empirical bioethics, evidence-based bioethics, bioethics research, social science and bioethics.
In 1997, the Wellcome Trust Biomedical Ethics programme was launched in the UK to a mixed reception. On the one hand, funding in the UK for biomedical ethics was virtually non-existent; as a multidisciplinary field it tended to fall between the remits of the various UK funding bodies. Some EU funding was available but this required scholars to form consortia with other EU partners rather than, as it were, pursuing their own research interests solo. From this point of view, the launch was greeted with relief and enthusiasm. On the other, it was clear that Wellcome had a particular kind of biomedical ethics research in mind, and at the time applications were limited to those related to genetics or neurosciences would be funded. Moreover, Wellcome was seeking research on the social sciences end of the interdisciplinary field of bioethics, whilst making clear that they were only interested in research that would make a defined impact at the ethics end of the field1. In effect, researchers in bioethics and social sciences would have to enter what could be described as an arranged marriage if they wanted Wellcome funding.
Purists on both sides objected to these marriages, considering that they threatened the integrity of their subjects and that from this purist point of view, the children of these marriages would be necessarily impaired. Traditionally, social sciences research is concerned with describing the world as it is, or how it is perceived to be, by certain people or groups, and the analysis of those perceptions and experiences. The researcher observes, analyses and writes up, but never judges even when acknowledging her biases. Bioethics, on the other hand, has traditionally been concerned with describing how the world ought to be. It is essentially prescriptive, seeking to guide decision and action, and to evaluate and analyse moral concepts. The two disciplines, described in this crude way, could be said to occupy different worlds - the worlds of 'is' and 'ought' respectively - and as Hume's naturalistic fallacy pointed out, the latter cannot be derived from the former, so the interest of ethics in actual facts (the 'is') has been as a purely practical grounding: getting the facts right before pronouncing on how things ought to be. Thus, some social scientists were afraid that ethics would inevitably introduce an unnecessary bias, whilst some bioethicists believed that what people actually thought/did was irrelevant to what they ought to think/do, and didn't much see the point therefore of discovering what people did think/do (for an excellent and measured account of the tensions between empirical research and bioethical research, from the ethics point of view, see Harris (2001).
Despite these concerns, many ethicists and social scientists seem to have very happy marriages, leading to the development of a field that is coming to be referred to as 'empirical bioethics' or 'evidence based ethics' (Ashcroft, 2003; Borry, Schotsmans, & Dierickx, 2005; Goldenberg, 2005) - indeed, some willing (unarranged) marriages were already occurring prior to the intervention of Wellcome. …