Ethics and governance of UK Biobank

24 September 2003

The first public draft of the Ethics and Governance Framework for the UK Biobank project was published on 24 September 2003. The project will collect lifestyle data, medical records and biological samples from 500 000 volunteers aged 45-69, to help scientists unravel the genetic and environmental factors influencing health.

The UK Biobank funders - the Wellcome Trust, the Medical Research Council and the Department of Health - are aware that the project raises particular ethical concerns. In April 2003, the funders appointed an Interim Advisory Group, a panel of experts chaired by Dr William Lowrance, to advise on the Ethics and Governance Framework for the project. The group's deliberations were informed by extensive expert and public consultations to identify possible concerns and priorities.

The Framework will set standards for the project and ensure that the data samples are used only for ethically and scientifically approved research. Key issues include consent, confidentiality, ownership of and access to the data and samples, management of the Biobank, and accountability.

Following publication of the Framework, there will be a one-month period in which stakeholders, members of the public, and scientists involved in the project will be invited to comment. The document will then be revised and endorsed by the funders, before being adopted by the Board of Directors for the project. It will be updated throughout the project to take account of scientific, legal and other developments. An independent Ethics and Governance Council will be appointed to be a guardian of the Framework and to advise the Board and report publicly on the conformance of UK Biobank's activities with the Framework.

See also

• Ethics and Governance Framework for UK Biobank published for comment (Press release: 24 September 2003)

External links

• UK Biobank (View the Ethics and Governance Framework)