Developing a new ethics advisory service for UK Biobank (360G-Wellcome-205339_A_16_Z)

This proposal outlines the need for research support for the new UK Biobank Ethics Advisory Committee (UKB EAC), including the appointment of a senior research fellow (SRF). Located within a centre of excellence for clinical ethics and law research, the SRF will build the previous work of the Ethics and Governance Council (EGC), and undertake detailed empirical and conceptual research to support the research led arm of the new UKB EAC. The SRF will report to the UKB EAC and (indirectly) to UKB board and be supervised, and supported, by members of the EAC. This new research led service will ensure that advice, or position statements, from UKB EAC is evidence based and responsive to ethical issues as they arise, and that UKB will continue to maintain its robust ethical justification for current and future activity. In this way we envisage that that the UKB EAC will provide an ethical benchmark for existing cohort studies, as well as to new studies such as the new 5 million advance disease detection cohort.