How we operate
The Council was established in November 2004 and has five key functions:
- To keep the creation, maintenance and use of the UK Biobank resource under review in order to advise and report publicly on the conformity of UK Biobank's activities with the Ethics and Governance Framework (EGF);
- To consider and advise on revisions to the EGF that may be required to respond to changes in the legislative or regulatory context, developments in ethics or advances in science or technology;
- To advise on UK Biobank policies that relate to or flow from the EGF (such as those on recruitment, access, or complaints handling);
- To keep under review applications for access to the UK Biobank resource with regard to the interests of research participants and in accordance with the Intellectual Property and Access Policy;
- To approve any transfer of the UK Biobank resource (or substantial parts of it) to a third party, for example, in the event of a liquidation, as set out in the Memorandum and Articles of Association of UK Biobank Limited.
Further information is available in the full terms of reference and modus operandi .
In 2015 an expert Review Panel was convened to consider the performance of the Council over the last five years and to make recommendations to the funders over any possible changes required to its operations. The full list of conclusions and recommendations is available in the EGC review report. Implementation of the recommendations is underway and discussions will continue in 2016.
The EGC was previously reviewed in 2010. At that time the Review Panel made a number of communications-related recommendations, including the proposal that the Council should step back from its public engagement activities. This position has been endorsed by the 2015 Review Panel. The Council's Communications Strategy.
Conflicts of interest within the UK Biobank Ethics and Governance Council are managed in accordance with the policy on conflicts of interest under which each member of the Council has declared their discloseable interests. A summary is available in the register of interests of Council members.
Complaints about the UK Biobank Ethics and Governance Council are handled in accordance with the policy on complaints.
The Council Secretariat are hosted by the Wellcome Trust. If you require further information relating to the Council please contact Adrienne Hunt, EGC Secretary at EGCinfo@wellcome.ac.uk.