The development of UK Biobank: Excluding scientific controversy from ethical debate

Abstract

The development of the UK Biobank is described, including the ongoing controversy about its scientific validity and the process of public and stakeholder consultation employed by the biobank's funders. It is argued that the exclusion of ‘expert’ debates on public health and science from the consultation process distorts the ethical debate. Genetic risk prediction and prevention is a questionable health strategy, underpinned by controversial assumptions, yet its merits are taken as given when questions are focused on consent, access and privacy. The separation of ‘health’, ‘science’ and ‘ethics’ makes the decision to fund the project unaccountable and has serious implications for public trust. Bioethicists and others should contribute to broadening the ethical debate, so that the underlying rationale of population biobanks is open to public scrutiny.