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Uk Biobank

Volume 410: debated on Friday 19 September 2003

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To ask the Secretary of State for Health (1)how much funding the Government has put into the creation of the UK Biobank; who the other funders are; and how much they have put in; [130097]

(2) what the terms of reference are for the United Kingdom Biobank; and for how long the Government intends to fund the United Kingdom Biobank; [130098]

(3) when the independent oversight body for the United Kingdom Biobank will be set up; and who will sit on the body. [130099]

The UK Biobank is a partnership between the Medical Research Council (MRC), the Department of Health and the Wellcome Trust. Initially, the Department will contribute £5 million and the MRC and the Wellcome Trust will each contribute up to £28 million, making a total of £61 million, of which £33 million is from government sources. In addition the Scottish Executive has offered to contribute £0.5 million to the project.The UK Biobank is being established as a limited company with charitable status. The memorandum and articles of association have been substantially agreed by the funders and are being reviewed by the Charity Commission. The UK Biobank is a long term project and it is envisaged that information on the health of the participants will be collected for at least ten years after recruitment in order to ensure the UK Biobank reaches its full potential as a research resource. Initial funding is for the piloting and recruitment phases (approximately seven years), but the funders recognise that additional funding (at a lower level) will be required for the follow-up phase.The independent oversight body is now termed the Ethics and Governance Council on the recommendation of the interim advisory group that has developed the draft ethics and governance framework for the UK Biobank. The framework will be published for consultation later this month and will be discussed at the meeting of the Human Genetics Commission on 25 September 2003. Responses to the consultation will inform the exact timescale for the creation of the council and its composition, but the funders want to establish this body as soon as possible.