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UK Biobank publishes an Ethics and Governance Framework for comment


Posts: 4
Joined: 2007-06-07
The UK Biobank aims to build a major resource to support a diverse range of research that will in turn improve the prevention, diagnosis, and treatment of illness and the promotion of health throughout society. The project will follow the health of a large group of volunteers for many years, collecting information on environmental and lifestyle factors and linking these to medical records and biological samples. The samples will be stored so that they can be used for biochemical and genetic analysis in the future. Yesterday, the funders of the UK Biobank project - the Medical Research Council, the Wellcome Trust and Department of Health - have published for you the public to comment on a proposal for an Ethics and Governance Framework that will govern the operations of UK Biobank. The document is the first of its kind and sets new standards for consultation on ethics and governance in UK science. The key points of the Ethics and Governance Framework are: · Participation will be entirely voluntary and all participants will have a continuing right to withdraw at any time. · Consent will require an agreement from volunteers 'to participate in UK Biobank', based on an explanation and understanding of a number of issues, including the purpose of the project, the types of information to be collected, and the safeguards that will be in place. · Confidentiality will be maintained by keeping all identifying information completely separate from sensitive information, such as health and lifestyle data. This information will only be linked using a code, and only re-linked using a 'key' according to strict safeguards. The number of people with access to the key will be kept to a minimum. · All researchers, whether from the private sector, charities, or the public sector, will only gain access to the anonymized data if they meet rigorous ethical and scientific criteria, including scientific peer review, approval by an NHS Multi-centre Research Ethics Committee, and review by the UK Biobank to ensure proposed uses are consistent with the UK Biobank's purpose, the participants' consent, and the Ethics and Governance Framework. To comment on the first public draft of the UK Biobank Ethics and Governance Framework up to 24 October 2003 download a word file at http://www.ukbiobank.ac.uk/documents/egf-comment-version.doc and fill in the form. openDemocracy also invites you to post your comments here.


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