Last updated Oct 11, 2018
The new UK Biobank Ethics Advisory Committee supersedes the Ethics and Governance Council
Anneke Lucassen, a professor of clinical genetics at Southampton University with extensive ethical expertise, has joined the Board of UK Biobank and will Chair its new Ethics Advisory Committee (EAC). Anneke will be joined on the EAC by Nick Ross, a well-known broadcaster, who has been involved in national bioethics and who has been closely involved with UK Biobank since its inception. Dr Susan E Wallace, Lecturer of Population and Public Health Sciences in the Department of Health Sciences at the University of Leicester, also joins the Committee.
The Ethics Advisory Committee replaces the UK Biobank Ethics and Governance Council (EGC) which was established by the UK Biobank funders, the Wellcome Trust and the Medical Research Council, when UK Biobank began the recruitment of its 500,000 participants in 2006.
The function of the EGC was to:
- act as an independent guardian of the UK Biobank Ethics and Governance Framework (EGF) and advise on its revision;
- monitor and report publicly on the conformity of the UK Biobank project with the EGF;
- advise more generally on the interests of research participants and the general public in relation to UK Biobank.
Over the intervening years, the EGC has discharged this role and has made a considerable contribution to the UK Biobank resource.
It became apparent that during this period UK Biobank had developed at a considerable pace and, as a consequence, the EGC recommended that its oversight role would be more effectively discharged by better integration within UK Biobank as an advisory committee of the UK Biobank Board. This recommendation has been accepted by the UK Biobank funders and by the UK Biobank Board.
The remit and constitution of the EAC shall be to provide advice to the UK Biobank Board on ethical issues that arise during the maintenance, development and use of the UK Biobank resource, including:
- identifying, defining and examining relevant ethical issues:
- providing advice, guidance and recommendations on relevant ethical issues; and
- reviewing and advising on policies which have an ethical dimension that is relevant to UK Biobank.
UK Biobank’s Ethics Advisory Committee Terms of reference
Further members will be announced in due course.
Professor Anneke Lucassen, combines key clinical, laboratory and ethico-legal expertise to research developments in genetic medicine and to effect improved delivery of genomic services to individuals and families. “Medical research, including much generated from UK Biobank, is moving at a tremendous pace. It is important not just to respond to changes, but to foresee them, consider their impact and ensure new advances are used in the best way to improve treatments. I am really looking forward to working with UK Biobank and its participants and researchers in this pioneering initiative.”
Nick Ross chaired the advisory board of the Wales Cancer Bank, was a member of the Nuffield Council on Bioethics and of Academy of Medical Sciences ethical inquiries, and is a member of the Royal College of Physicians committee on ethical issues in medicine.
Dr Susan E Wallace is Honorary Lecturer of Population and Public Health Sciences in the Department of Health Science, University of Leicester, UK, and a consultant in research ethics. She is currently working on projects with the Centre of Genomics and Policy, McGill University, Montreal, Canada, and the Centre for Health, Law and Emerging Technologies (HeLEX), Nuffield Department of Population Health, University of Oxford, UK. She is Co-Chair of the International Cancer Genome Consortium (ICGC) ARGO Ethics and Governance Committee, sits on the Scientific Advisory Boards of ELIXIR and the Extended Cohort for E-health, Environment, and DNA (EXCEED) cohort study (Leicester) and is an Expert Panel Member for the Research Foundation – Flanders (FWO). She is the ethics representative on the MRC UK Brain Banks Steering Committee and the Independent Data Monitoring & Steering Committees for the Institute of Cancer Research BARCODE 1 & 2 studies. Previously, she was a member of the Ethics and Governance Council of UK Biobank, the Nuffield Council on Bioethics Working Party on Biological and Health Data and various workings groups for the Global Alliance for Genomics and Health. Her research interests include the legal and policy implications of population-based and disease-based longitudinal cohort studies and biobanks; the ethical issues surrounding the collection, use, linking and sharing of research data across international borders; and research ethics review.
Sir Michael Rawlins, Chairman of the UK Biobank Board, paid tribute to the work of the Ethics and Governance Council. “UK Biobank is a major health experiment, following the lives of 500,000 volunteers and providing information to the research community. No-one knew if it was possible, but we have shown that it is. Members of the EGC helped steer us successfully through these early days when many of the scientific and ethical questions that arose were being asked for the first time. We thank them for their energy and commitment to this project and for helping us to get it right.”