UK Biobank reveals ethics framework

Rules aim to protect donor confidentiality, but some critics remain unconvinced

Pat Hagan(pat.hagan@btconnect.com)
Sep 23, 2003

New guidelines have been drawn up to protect the identity of people who volunteer to donate samples to the UK Biobank, the project that aims to collect half a million DNA samples for future medical research.

There will also be a ban on the sale of any DNA samples to private or commercial interests, and access to data will only be granted once research proposals have undergone stringent checks.

The plans, announced on Wednesday, are set out in the UK Biobank Ethics and Governance Framework, a document designed to ease concerns in some quarters that sensitive genetic data gathered by the gene bank could fall into the hands of companies that will abuse its use.

The bank, funded by £45 million (approximately $51.5 million) from the Medical Research Council, the Wellcome Trust, and the Department of Health, is a long-term project intended to improve the...

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