Biobanks and bioethics: the politics of legitimation

Abstract:

Taking Biobank UK as its centrepiece, this paper analyses the politics of legitimation accompanying the emergence of population-based genetic databases and the contribution of bioethics to the power play therein. First, it explores the nature of the legitimation problem experienced by biotechnology and considers the extent to which bioethics can be regarded as an epistemic community capable of responding to that problem through a regulatory contribution. Second, drawing on a range of documentary and internet sources, it examines the ethical content of the policy discourse of biobank regulation in four countries in terms of the balance of power expressed therein between the rights of citizens, science, industry and the state in relation to the control of genetic information. Third, the analysis deals with the contribution of the international discourse and networks of bioethics to the policy debate of biobank regulation and the disciplinary identity of this divided epistemic community.