UK Biobank Ethics & Governance Council
Since the idea of establishing a powerful national population blood-based resource for researchers was first proposed in May 1999, the detailed protocols and ethics and governance aspects of the project have been subject to the very highest degree of scrutiny, consultation and review.
The UK Biobank funders are aware that the analysis of health data and biological materials in such depth by many projects over time raises a number of ethical concerns. They have been committed to developing a public Ethics and Governance Framework (EGF) to set standards for the project. They will ensure that safeguards are in place so that data and samples are only used for scientifically and ethically approved research.
An independent Ethics and Governance Council (EGC) was formed in November 2004 to help guide UK Biobank. This 11 person expert group is chaired by Graeme Laurie, Professor of Medical Jurisprudence at the University of Edinburgh.
In gaining approval for the research, UK Biobank went to the North West Multi Centre Research Ethics Committee (MREC), which covers the UK. We also sought the approval in England and Wales from the Patient Information Advisory Group (PIAG) for gaining access to information that would allow us to invite people to participate. PIAG is made up of representatives of patient groups, healthcare professionals and regulatory bodies. In Scotland, we have approval from the Community Health Index Advisory Group (CHIAG).
The pilot project which took place in Manchester in 2006 was closely monitored, allowing us to modify and improve all aspects of the recruitment process. The Integrated Pilot Report gives more information on this aspect of our work.
- Ethics & Governance Framework (EGF) [PDF 293k]
- Ethics & Governance Council (EGC)
- Access & Intellectual Property [PDF 288k]
- The public consultation process
- Integrated Pilot Report [PDF 546k]