Ethics and Governance Council formed to oversee UK Biobank

Membership of the independent body to advise UK Biobank on ethical, legal and social considerations was announced today. The Ethics and Governance Council (EGC), chaired by Professor Alastair V. Campbell of the University of Bristol, is made up of ethicists, lawyers, scientists and experts on social and consumer issues. UK Biobank is the world’s biggest resource for the study of the role of nature and nurture in health and disease.

The Council will ensure UK Biobank’s accountability to the public, acting as an independent guardian of the ethical framework for the project. It will report publicly on UK Biobank’s activities, looking particularly at how the project safeguards the interest of its participants and the wider public.

Members of the Council were appointed by an independent Appointments Committee chaired by the Reverend Dr John Polkinghorne, former member of the Human Genetics Commission. The Council’s first meeting will be in late November.This is a critical time as pilot studies commence, recruitment of participants is planned and major decisions are being made about the policies that will govern the project.

Professor Campbell commented: “The Ethics and Governance Council will set a new international standard for monitoring projects of this type, ensuring that UK Biobank has rigorous standards on ethical, legal and social considerations. I am confident that the breadth of experience and skills reflected in the Council’s membership will provide a highly effective safeguard for the participants and the public.”

Professor Campbell will also speak at the 7th World Congress of the International Association of Bioethics in Sydney later this month, where he will set out the unique governance structure being established for UK Biobank and consider its implications for other international biobanks.

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Media contacts

NB Queries concerning this press release should be addressed to the press offices of the Wellcome Trust, MRCor Department of Health (details below).In future, press releases concerning the Council will be issued by the University of Bristol, to whom all queries should be addressed.

University of Bristol

Mr Barry Taylor - 0117 928 8867 (office hours)
01275 856 647 / 07748 337172 (out of office hours)

barry.taylor@bristol.ac.uk

Wellcome Trust

Miriam de Lacy / Mark Anderson - 020 7611 8285 / 8612

m.delacy@wellcome.ac.uk / m.anderson@wellcome.ac.uk

MRC

Ms Sarah Egan - 020 7637 6011

sarah.egan@headoffice.mrc.ac.uk

Department of Health

Vicky Wyatt – 020 7210 5656

Vicky.Wyatt@dh.gsi.gov.uk

Notes to editors

1. Membership of UK Biobank Ethics and Governance Council:

Professor Alastair Campbell

Alastair Campbell is the inaugural Professor of Ethics in Medicine in the School of Medicine, University of Bristol and Director of the Centre for Ethics in Medicine. He is a member of the Medical Ethics Committee of the British Medical Association and a former president of the International Association of Bioethics. He served on the Minister of Health’s Review Team into the arrangements for surrogacy in the United Kingdom and as a member of the Chief Medical Officer’s Expert Group on Cloning. Until recently, he was Vice-Chairman of the Retained Organs Commission and Chairman of the Wellcome Trust's Standing Advisory Group on Ethics.He also served as a member of the Interim Advisory Group on Ethics and Governance for UK Biobank, and is a member of the Wellcome Trust’s Biomedical Ethics Funding Committee.

Ms Andrea Cook OBE

Andrea Cook is currently the Chair of Water Voice Northumbria, which represents consumer interests in the water and sewerage industry.She was formerly Chief Executive of the charity National Energy Action, which promotes energy efficiency initiatives to tackle the problems of low-income consumers.Ms Cook was a member of the UK Round Table on Sustainable Development and the government’s Advisory Group to the New Deal Task Force.She has also served as a magistrate and as a trustee of NCVO.

Ms Jayam Dalal

Jayam Dalal is a freelance marketing consultant and has over 15 years experience in this field.She sits as a lay member on the Residential Property Tribunal Service (Public Appointment within the Office of the Deputy Prime Minister), and also acts as a Mentor to new appointees to the Tribunal.Ms Dalal is an Independent Assessor for Public Appointments within the Department of Culture, Media & Sport and a Partner within the Women's National Commission.She also works with the Sussex Police as a member of their Independent Advisory Group, and Domestic Violence Working Group.

Professor the Baroness Finlay of Llandaff

Ilora Finlay is a consultant in palliative medicine and chronic pain at the Velindre NHS Trust, Cardiff.She is also an Honorary Professor and Vice Dean of the University of Wales, College of Medicine.Professor Finlay is Director of the Institute of Medical Ethics and has served on several committees and advisory panels such as the Science Committee of Cancer Research UK and the Home Office Advisory Council on Misuse of Drugs Act.She has had over 126 papers and seven books published and holds senior editorial positions for medical journals such as Lancet Oncology and the Journal of Evaluation in Clinical Practice.In 1996, Baroness Finlay was named Welsh Woman of the Year in recognition for her work in the field of palliative care. In 2001, she was appointed a people’s peer in the first open contest for membership of the House of Lords.

Professor Roger Higgs MBE

Roger Higgs is professor emeritus and former deputy head of division at GKT School of Medicine, King’s College, London.He retired from the Department of General Practice and Primary Care at King’s at the end of July 2004, and until March this year worked as a general medical practitioner within the inner city practice that he founded in 1975.He has had eighty papers and six books published in the fields of medical ethics and general practice. He also chairs the Steering (Editorial) Committee of the Journal of Medical Ethics and sits on various committees for bioethics and healthcare organisations. He has been a leader in developing teaching of general practice and an innovator in NHS service change at the interface between primary and secondary care.

Professor Ian Hughes

Ian Hughes is a professor of pharmacology at the School of Biomedical Sciences, University of Leeds. He is Chair of Leeds Mental Health NHS Teaching Trust and has held non-executive Director appointments in the NHS since 1986. Professor Hughes’ research has focussed on both the scientific and educational aspects of pharmacology and he has published over seventy refereed full papers. He is currently Vice-President (Academic Development) of the British Pharmacological Society and a lay member of the General Osteopathic Council.

Ms Clara Mackay

Clara Mackay is Director for Policy and Research at Breast Cancer Care.She is also Commissioner for the Patient and Public Involvement in Health Commission and Chair of the MRC/ESRC Innovative Health Technologies Research Programme Advisory Group.Previously, Ms Mackay had a senior position with the UK Patients Forum and was also Principal Policy Adviser (Health) for the Consumers’ Association.She was also a member of the Public Advisory Group to the NHS National IT Programme – Electronic Records.

Professor Sheila McLean

Sheila McLean is the first holder of the International Bar Association Chair of Law and Ethics in Medicine at Glasgow University and is Director of the Institute of Law and Ethics in Medicine at Glasgow University.She has acted as a consultant to the World Health Organisation and the Council of Europe, and to individual States. She chaired the Scottish Independent Review Group on Retention of Organs at Post-Mortem, the Scottish Criminal Cases Review Commission, and the Scottish Office Steering Group on Female Offending. She is or has also been a member the BMA Ethics Committee, the UK Xenotransplantation Interim Regulatory Authority, the Policy and Evaluation Advisory Committee of the Nuffield Trust, the United Kingdom Central Council for Nursing, Midwifery and Health Visiting, the Review Body on Doctors’ and Dentists’ Remuneration Policy and was appointed by the Department of Health to review the Consent Provisions of the Human Fertilisation and Embryology Authority. Professor McLean is currently a member of the Wellcome Trust's Biomedical Ethics Funding Committee and the AHRB Peer Review College.

Ms Sally Smith QC

Sally Smith was called to the Bar in 1977 by Inner Temple and has been a practising Barrister ever since. She was appointed Queen’s Counsel in 1997. She specialises in medical law, with a particular interest in class actions, and has represented the NHS in major litigation including the Benzodiazapine Litigation, the Breast Radiation Litigation and currently the Nationwide Organ Retention Litigation. She serves on the Royal College of Physicians Ethics Commitee and the newly established MRC ethics committee. Previously she served on the St Thomas’ Hospital Research Ethics Committee.

Dr Sandy Thomas

Sandy Thomas is the Director of the Nuffield Council on Bioethics as well as a Senior Fellow within the Science Policy Research Unit (SPRU) at the University of Sussex.Her recent experience at the Nuffield Council has included working on studies on “Genetics and human behaviour: the ethical context” and “The ethics of patenting DNA”. At SPRU her research projects have included “Ownership of the human genome” and “Intellectual Property Rights in Biotechnology: Corporate Strategy in Europe”. She serves on the Royal Society’s Science and Society Committee and is a member of the Genetics Society.Dr Thomas is also a member of the Editorial Board for Science and Public Affairs as well as the Academy of Medical Sciences Working Group: Impediments to Medical Research.

Professor Christopher Wild

Chris Wild is Professor of Molecular Epidemiology and Head of the Centre for Epidemiology and Biostatistics at the University of Leeds. His research focuses on the application of biological measurements to human population studies in order to better understand the interaction of environmental and genetic risk factors in disease. His work includes studies of the adverse health effects of natural occurring dietary toxins in developing countries and the causes of oesophageal cancer. He has published over 150 full peer-reviewed scientific papers. Professor Wild is also Chair of the UK Molecular Epidemiology Group and a Senior Editor on the Cancer Epidemiology, Biomarkers and Prevention journal. Before moving to Leeds he was Chief of the Unit of Environmental carcinogenesis at the International Agency for Research on Cancer in Lyon, France.

2. The UK Biobank project will be the world's biggest resource for the study of the role of nature and nurture in health and disease. The project will involve up to 500 000 volunteers, aged 45-69, who will complete lifestyle questionnaires and provide a blood sample for DNA and other analysis. This information, together with their medical histories, will be combined to create a (reversibly) anonymized national database - the UK Biobank. This will serve as a resource for scientists to investigate and determine the factors that cause the common disorders of later life, such as heart disease, cancer, Parkinson's disease, and type 2 diabetes. National and international experts in the field have rigorously and independently reviewed the science of the project, which has the support of a number of leading research charities. It is being funded jointly by the biomedical research charity the Wellcome Trust, the Medical Research Council, the Department of Health and the Scottish Executive

3. The Wellcome Trust is an independent research funding charity established in 1936 under the will of the tropical medicine pioneer Sir Henry Wellcome. The Trust’s mission is to foster and promote research with the aim of improving human and animal health and it currently spends over £400 million per annum.

4. The Medical Research Council (MRC) is a national organization funded by the UK tax-payer. Its business is medical research aimed at improving human health; everyone stands to benefit from the outputs. The research it supports and the scientists it trains meet the needs of the health services, the pharmaceutical and other health-related industries and the academic world. The MRC has funded work which has led to some of the most significant discoveries and achievements in medicine in the UK. About half of the MRC's expenditure of over £412 million is invested in its 50 Institutes, Units and Centres, where it employs its own research staff. The remaining half goes in the form of grant support and training awards to individuals and teams in universities and medical schools.

5. Members of the appointments committee are:

• Rev Dr John Polkinghorne (Chair)

• Professor Martin Bobrow

• Mr Niall Dickson

• Dr William W Lowrance

• Professor Genevra Richardson

6. Information on the Appointments Committee, and on the Ethics and Governance Framework and associated consultations, is available on the UK Biobank website: www.ukbiobank.ac.uk