Engendering Consent: Bioethics and Biobanks
The recent development of biobanks-large scale databases comprising genetic, personal medical, and lifestyle information-has brought into sharp relief the limitations of the established approaches of bioethics. In particular, it has highlighted how adherence to abstract principles and the concern with a restricted range of issues has constrained debate on the substantive social, economic, and political questions raised by such collections. In this chapter, I examine how bioethics’ concepts and principles have been deployed to help resolve the challenges posed by biobanks, in particular to lend legitimacy to and achieve consent for projects for which there are high expectations and considerable political support. At the outset, it is important to acknowledge that biobanks have been defi ned in various ways and have taken somewhat different forms in the different countries in which they have emerged. Their scale, operation, regulatory mechanisms, and, to some extent, stated objectives vary across jurisdictions. Responses to their emergence have also been far from uniform, refl ecting local histories, cultures, and politics. This presents a challenge and some dangers when seeking to generalise about their nature, operation, regulation, and implications. However, since the late 1990s, there has been an emerging international consensus among scientists and infl uential decision makers about the value of these collections and the need to support them.