ABSTRACT
In March 2007 the first participants were recruited to UK Biobank and the world's largest planned national repository of human DNA and health-related data to be established for epidemiological research was officially launched. The establishment of an Ethics and Governance Framework (EGF) and an independent ethics council to oversee the project along with attempts to elicit the views of a range of stakeholders to inform this process prompted an independent international review panel to claim that the 'UK Biobank's approach to ethical governance was exemplary and would be held up as a gold standard across the world' (MRC 2007). 1 To be sure, the long awaited launch of the project had been preceded by a lengthy period of planning and ethical deliberation. When proposals for a UK genetics population database first emerged in 1998 it was apparent to those involved in discussion about the setting up of such a project that careful attention would need to be paid to its ethical aspects. In particular, following on from the disputes and controversies that had thwarted the Icelandic genetic database (see Pálsson, Chapter 3) the UK's funding bodies were aware of the need to pay special attention to the requirements of informed consent and to ensure the public acceptability of the project. In the Icelandic case controversy had arisen over both its departure from the normal practice in research of gaining specific informed consent from participants and in its coalition with the industrial sector. In the UK case the issue of consent was to be carefully deliberated upon, and it was decided that although the resource could be accessed by commercial entities this would be subject to adherence to strict ethical protocols. Furthermore, the biobank project would be a public venture funded by UK medical charities and government departments 2 .
