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UK Biobank Ethics and Governance Council reports on its work
The independent Council that oversees the ethics and governance arrangements for UK Biobank has published its annual review for 2006. The UK Biobank Ethics and Governance Council’s (EGC) report outlines the key principles of Biobank’s Ethics and Governance Framework and summarises the advice it gave to UK Biobank during 2006 on several issues, including the information given to prospective participants and the procedure for the enrolment interview and taking of samples.
Suggestions for improving the enrolment procedure were based on observation of the pilot phase conducted during 2006, and involvement in developing the Standard Operating Procedures for managing the enrolment process. They included paying greater attention to the privacy of participants during the enrolment interview, and suggesting the need for the procedures to cover how Biobank staff would manage any incidental findings arising from the initial medical examination.
The EGC advised Biobank that prospective participants should be told more explicitly that their consent entailed allowing access to their full past and future medical record, that commercial companies are expected to apply for access to the Biobank resource, and that participants will not benefit financially from taking part in Biobank. Biobank has accepted these recommendations.
The report also outlines the EGC’s efforts to achieve transparency and public engagement in its work, and its programme of commissioned research. The latter includes a literature survey of published research regarding public attitudes to Biobank, and research on the concepts of ‘public interest’ and the ‘public good’.
The EGC recognises that it is operating in a dynamic environment of changing legal requirements and social attitudes, as well as the need to adjust the parameters of the Biobank project itself in the light of experience. It states its intention to maintain active communication with the Biobank executive and, as an example of this communication, an agreement to establish a procedure through which the EGC will be involved in monitoring any complaints received by Biobank.
The EGC is holding a public presentation and discussion of its work in Manchester on 11 June 2007.