UK Biobank
The UK Biobank is a 30-year epidemiological study funded by the Department of Health, the MRC, the Wellcome Trust and the Scottish Executive. The project is collecting information on the health and lifestyle of 500,000 UK volunteers aged between 40 and 69. The aim is to build the world’s largest information resource on the genetic and environmental factors that cause or prevent human disease.
Governance of the UK Biobank
The data and samples collected during the UK Biobank project will only be used for ethically and scientifically approved research.
Issues such as consent, confidentiality and the security of the data are guided by an Ethics and Governance Framework, which is overseen by an independent council chaired by Professor Graeme Laurie of the University of Edinburgh. This Ethics and Governance Council was set up by the MRC and the Wellcome Trust in 2004 to:
- Act as an independent guardian of the UK Biobank Ethics and Governance Framework and advise on its revision.
- Monitor and report publicly on the conformity of the UK Biobank project with the Framework.
- Advise more generally on the interests of research participants and the general public in relation to UK Biobank.
Expert comment on the draft research protocol
Following a request in 2005 to the MRC under the Freedom of Information Act, the MRC and the other funders of the project released the views of the independent experts who were asked to comment on the draft research protocol for the UK Biobank in 2001.
Below are links to the scientific and ethical experts’ comments and a commentary on the release of their views, and the Protocol Development Committees' response to the comments.
- Commentary on the release of the reviewers’ comments on the draft UK Biobank Protocol May 2005
- Ethical Review of November 2001: Draft Protocol for Biobank UK
- Reponse of the Protocol Development Committee to reviewers' comments 2002
- The UK Biobank website.