Governing UK Biobank: the importance of ensuring public trust

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Abstract

In the autumn of 2003, UK Biobank published the first draft of its Ethics and Governance Framework. Subsequently, this document has been available for interested parties to comment on and the UK Biobank Board of Directors is expected to adopt the final version in 2004. Here, we aim to contribute to this process and highlight to a wider audience some of the inconsistencies in the issues of consent, governance and right of withdrawal that emerge from the draft of the Framework. These issues will have implications for securing the public trust and long-term support that the success of the project depends on. Therefore, they must be considered carefully because the UK Biobank will be the first ever genetic database of a general population of this size to become operational, and will be used as a model for other projects of this kind.

Section snippets

Taking part in UK Biobank

A system of open, as opposed to informed, consent for those who volunteer to participate in UK Biobank is proposed in the Framework because, at the time of donation, its organizers are unable to inform participants of all the potential uses of their samples and personal information. Despite this, it is proposed that further consent would be sought for research outside of the assays covered by the original consent. It is a confusing mix of signals because, in practice, the stated purposes of UK

Governing UK Biobank

The Framework describes how the governance of UK Biobank will be structured internally by three bodies – the Board of Directors, the Science Committee, and the Ethics and Governance Council (EGC) – and externally by medical research ethics committees (MRECs), who will review all research proposals to use the database, and also by the Research Governance Framework for Health and Social Care (RGF) (http://www.ucl.ac.uk/primcare-popsci/nocten/documents/research_pack/res_gov_summ.PDF). Perhaps one

Looking to the future

The UK Biobank is at a crucial stage in its long gestation period. The project has the potential to be a vital resource for biomedical research in the 21st century and a model of how enterprises of this nature should be organized. We hope that the funders will address with greater clarity and detail the issues of participation, incentives and governance when finalizing the Ethics and Governance Framework. The long-term viability of UK Biobank relies on securing public support, trust and

References (2)

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