ABSTRACT
The purpose of UK Biobank is ‘to establish and operate a resource for research with the aim of improving the prevention, diagnosis and treatment of illness and promoting health throughout society for public benefit’ (UK Biobank 2007a). Recruitment of participants is currently underway and on completion in 2010 the resource is expected to contain health and lifestyle data and biological samples from some 500,000 people from the UK who were aged 40-69 at the time of recruitment. During the planning of the project, and in parallel with the development of the scientific protocol, an Interim Advisory Group (IAG) was established to make recommendations to the funders about an ethics and governance framework for the project. Two key recommendations to emerge from the deliberations of the IAG were, first, that UK Biobank should adopt an Ethics and Governance Framework (EGF) which lays out explicitly the commitments of UK Biobank to its participants, the public and other stakeholders, and, second, that a permanent and independent Ethics and Governance Council should be established to oversee the project and to monitor and advise on its operation. As a result, a permanent Ethics and Governance Council (EGC) was formed in 2004. In this chapter we will discuss the reasons why it was thought necessary to create this body, in addition to the other institutions and processes that existed for the regulation and ethics governance of research. We will comment on the practice and work of the EGC in light of our experiences of working on the Council and talk about the ways that the EGC has dealt with specific issues. But first we will provide a little more detail about the UK Biobank itself.
