Issue date: 4 April 2003

Joint press release issued by the Wellcome Trust, Medical Research Council and the Department of Health

New CEO Announces his Vision for UK Biobank at Parliamentary Event

Dr John Newton, the new Chief Executive Officer for the UK Biobank project, will make his first appearance this evening (Monday 7 April) at an event organised by the Parliamentary and Scientific Committee at Portcullis House.

During his speech to the Parliamentary and Scientific Committee Dr Newton, a public health specialist and epidemiologist and former Director of Research at the John Radcliffe Hospital in Oxford, will say:

• Of the Human Genome Project: "The last few years of the last century saw biomedical science transformed by the Human Genome Project. The new genetics provides a stunning opportunity to move ahead in our understanding of variability in human health. But the genome itself is not the answer. If these extraordinary insights are not to be relegated to a contemporary museum exhibit, we need to be able to develop practical intelligence. The UK Biobank is part of the continuing international effort to achieve just that."

• On the scientific design of the UK Biobank project: "There has already been useful scientific debate about the design of the project both in the UK and internationally, and the consensus reached is reflected in the draft scientific protocol. The power of the UK Biobank is that its design provides the most powerful means of identifying the true causes of disease and showing how they interact with one another. Unless information and samples are collected before people become ill it can be all but impossible to distinguish the causes of disease from its effects. I am looking forward to the next phase of development and would be delighted to receive constructive comment on any aspect of the project. We will not start recruiting until we are sure we have the best design."

• On the benefits of the UK Biobank:

1. "Studies using the UK Biobank resource will identify associations between discrete environmental, lifestyle and genetic factors and important interactions between these factors. This will allow the risk of disease to be predicted in populations. Predicting risk in individuals is not the aim of the study. Knowing difference in risk in populations can provide direct evidence for the scope of prevention."

2. "One person's diabetes or blood pressure is simply not the same as another's. Information from the UK Biobank will help specify meaningful subgroups of illness and improve the specificity, effectiveness of all kinds of care, not only drugs, but also social and emotional."

3. "Unlike disease-based studies, the results from the study will show which proteins or biochemicals are present before disease develops and therefore may be causative. This is the ultimate aim of epidemiologists and could lead directly to new treatments."

• On the potential for UK Biobank to save lives: "Results from studies with a similar design to the UK Biobank have already been used to save lives and from heart disease to cot death. The Framingham study in the US in the 1960s showed that people with elevated cholesterol were more likely to develop heart disease and later work clarified which forms of cholesterol were important. Now we have drugs that reduce cholesterol and heart disease risk by 30 per cent in some groups. If the UK Biobank generated just one finding of this significance it would have been worthwhile in public health terms."

• As a resource for the world-wide scientific community: "The UK Biobank is not a single study of even a single project, but a resource for the biomedical research community for the first few decades of this century. Its true value may not be realised for some 30 years. But every generation has the responsibility to plant the shade trees for the next."

• On the importance of a strong ethics and governance structure: "Consultation for the project began three years ago and is continuing. Our consultations with the public and other stakeholders led to the development of the Interim Advisory Group, which is advising the funding bodies on an ethics and governance framework for the project. Chaired by Dr William Lowrance, the IAG is considering issues such as consent, confidentiality and data security. The approach taken on these issues will set a new standard for ethics and governance in this area - one that is wholly appropriate to UK Biobank's status as a flagship project for UK science."

Contacts:

For more information, contact
Dr Shaun Griffin, Wellcome Trust Media Office: 020 7611 8612 Mobile: 07710 307059;
E-mail: s.griffin@wellcome.ac.uk

Johnny Steyn, MRC Press Office: 020 7637 6011
E-mail: Johannes.Steyn@Headoffice.mrc.ac.uk

Alison Langley, Department of Health Media Centre: 020 7210 5230
E-mail: alangley@doh.gov.uk

Notes to Editors:

• A photograph of Dr John Newton is available to download. [ 70dpi, 25k], [ 180dpi, 87k], [ 300dpi, 173k]. A copy of the speech is available on request.

• The UK Biobank is a major UK-based resource that will be used by the world's top scientists to explore the roles 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 an 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 charities. It is being funded jointly by the biomedical research charity the Wellcome Trust, the Medical Research Council and the Department of Health.

• The Interim Advisory Group is Chaired by Dr William Lowrance, a consultant in health policy and ethics, based in Geneva, and a Senior Associate of the Judge Institute of Management at the University of Cambridge. Dr Lowrance has recently completed a project with The Nuffield Trust, resulting in a major report, 'Learning from Experience: Privacy and the Secondary Use of Data in Health Research'. Biographies of the members are below:

o Dr William W Lowrance (Chair)
William Lowrance is a consultant in health policy and ethics, based in Geneva, currently working on privacy aspects of health databases, genetics, and pharmaceutical R&D. He is a Senior Associate of the Judge Institute of Management at the University of Cambridge, and he pursues some of his work from that base. Dr Lowrance has taught and conducted research on science and technology policy, nuclear proliferation, environmental policy, health policy, and risk decision making, at Harvard, Stanford, and Rockefeller Universities. During the 1980s he directed the Life Sciences and Public Policy Program of The Rockefeller University, during which time he wrote a broad book, 'Modern Science and Human Values'. He has served as the Executive Director of the International Medical Benefit/Risk Foundation, headquartered in Geneva, and served on many government and industry advisory boards. His focus for the past five years has been the protection of health information, especially in research. In 1997 he prepared a report, 'Privacy and Health Research', for the US Secretary of Health and Human Services, and in 1999 a report, 'Data Protection in Transborder Flow of Health Research Data', for the OECD. Recently Dr Lowrance completed a project with The Nuffield Trust, resulting in a major report, 'Learning from Experience: Privacy and the Secondary Use of Data in Health Research'.

o 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 former President of the International Association of Bioethics. Recent publications include 'Health as Liberation' (Pilgrim Press, 1995) and 'Medical Ethics', co-authored with Max Charlesworth, Grant Gillett and Gareth Jones (Oxford University Press, 1997). Professor Campbell is a member of the Medical Ethics Committee of the British Medical Association and a former member of the Ethics Committee of the Royal College of Obstetricians and Gynaecologists. He served on the Minister of Health's Review Team into the arrangements for surrogacy in the United Kingdom and, more recently, as a member of the Chief Medical Officer's Expert Group on Cloning. Professor Campbell is currently Chairman of The Wellcome Trust's Standing Advisory Group on Ethics and Vice-chairman of the Retained Organs Commission, a Special Health Authority established by the Department of Health. Research interests include: Clinical ethics; Justice in health care; Theology and bioethics; Virtue ethics.

o Professor Erica Haimes
Erica Haimes is Professor of Sociology at the University of Newcastle and Executive Director and Director of Research at PEALS (the Policy, Ethics and Life Sciences Research Institute). PEALS is an interdisciplinary collaboration between the Universities of Newcastle and Durham and the International Centre for Life at Newcastle. PEALS aims to research, inform and improve policy making, professional practice and public participation in debates around the life sciences and in genetic and reproductive technologies in particular. Professor Haimes' research interests include; the relatiosnship between states, medicine and families, with particular reference to assisted conception and genetics; the links between Sociology and Ethics; and the Sociology of (genetic) identity. Much of her research has focused on the perspectives of 'lay people' towards these issues. She is the co-author of 'Adoption, Identity and Social Policy' (with Noel Timms, 1985) and 'Donor Insemination: International Social Science Perspectives' (with Ken Daniels, Cambridge University Press, 1998) and the forthcoming 'The Struggle for Identity: Self, Society and Assisted Conception' (Sage). She is currently completing a Wellcome Trust funded study on donors' and non-donors' views of the North Cumbria Community Genetics Project.

o Dr Graeme Laurie
Graeme Laurie is senior lecturer in law and co-director of the Arts and Humanities Research Centre for Studies in Intellectual Property and Technology Law. His research interests include the role of law in promoting and regulating science, medicine and technology. He has provided advice to, and been consulted by a number of bodies on matters of technology and law. These include the House of Commons Science and Technology Committee (1995), the Governments of Lesotho (1997) and the Faroe Islands (1999), the Massachusetts State Legislature (1999), the World Health Organisation, WHO (2000), and the Human Genetics Commission (2001). In 2001 he convened a WHO Working Group that produced international guidelines on the establishment and maintenance of genetic databases, and his publications include the monograph 'Genetic Privacy: A Challenge to Medico-legal Norms', published by Cambridge University Press in 2002.

o Professor Christopher Mathew
Christopher Mathew is Professor of Molecular Genetics in the Division of Medical and Molecular Genetics at the Guy's, Kings and St Thomas's School of Medicine, King's College London. He was Director of the Regional DNA Diagnostic laboratory at Guy's Hospital from 1989-1998, Chairman of the Specialty Advisory Committee on Genetics for the Royal College of Pathologists (1993-1996), and council member of the British Society of Human Genetics (1996-1998). He was elected as a Fellow of the Academy of Medical Sciences in 2001. He served on The Wellcome Trust Molecular and Cell Panel (1998-2001), and is currently a member of the Trust's Biomedical Resources Panel. His main research interest is in the discovery and functions of susceptibility genes for common multifactorial disorders, with particular reference to inflammatory bowel disease and cancer.

o Professor Jean McHale
Jean McHale took up a chair in Law at the University of Leicester in January 2000. She previously taught at the Universities of East Anglia, Nottingham and Manchester. Her research interests lie in the area of health care law. She is the author of several books including: 'Medical Confidentiality and Legal Privilege' Routledge (1993). 'A Question of Give and Take: Increasing the Supply of Donor Organs for Transplantation' Kings Fund Institute (1994) (with New, Solomon and Dingwall). 'Health Care Law: Text and Materials' Sweet and Maxwell (1997) (with Fox and Murphy); 'Law and Nursing' (2nd ed) Butterworth Heinemann (with Tingle) (2001). She was a member of the DTI Task Force 'The Promise of the Human Genome' 1999-2000.

o Mrs Helen Millar
Helen Millar is a retired adult education lecturer with many years experience in consumer representation in Europe and the UK. She is currently Vice-Chairman of the National Consumer Federation, was also previously Chairman of Consumer Congress and has been a member of the MRC Consumer Liaison Group since its inception three years ago. She has served as a lay member on several committees including on the Multi-Centre Research Ethics Committee for Scotland and her local hospital.

o The Baroness O'Neill of Bengarve, CBE FBA
Onora O'Neill is Principal of Newnham College, Cambridge. She has written widely on ethics and political philosophy, with particular interests in questions of international justice and in the philosophy of Immanuel Kant. She has been President of the Aristotelian Society (1988-89), a member of the Animal Procedures (Scientific) Committee (1990-94) and of the Nuffield Council on Bioethics 1991-98 (Chairman 1996-98). She was a member and later acting Chairman of the Human Genetics Advisory Commission (1996-99). Currently Chairman of the Nuffield Foundation, she was created a Life Peer in January 1999 and sits as a cross-bencher. Her books include 'Faces of Hunger: An Essay on Poverty', 'Development and Justice' (1986), 'Constructions of Reason: Exploration of Kant's Practical Philosophy' (1989), 'Towards Justice and Virtue' (1996), and 'Bounds of Justice' (2000).

o Mrs Madeleine Wang
From 1976 to 1981 Ms Wang worked as a nursing auxiliary and as a student nurse in a wide variety of NHS hospital settings, both acute and chronic, and with a range of patient groups. The last 20 years she have been spent actively pursuing public, voluntary and community work. Her experience of healthcare research includes involvement with a number of research projects, representative consumer bodies and groups. She is currently a board member of the Northern and Yorkshire Clinical Trials Unit, and lay-member of the General Optical Council, the MRC/Wellcome Trust Joint Steering Committee on Human Developmental Biological Resources, the Northern and Yorkshire Multi-centre Research Ethics Committee and the Royal College of Anaesthetists. She has been a NHS Trust Chair and Trustee of the National Childbirth Trust and was a member of the MRC Working Group on Personal Information in Medical Research.

• More information on the IAG, including a report of their first meeting is available at: www.ukbiobank.ac.uk/whatsnew.htm

• The Wellcome Trust is an independent, research funding charity, established under the will of Sir Henry Wellcome in 1936. The Trust's mission is to foster and promote research with the aim of improving human and animal health. Website: www.wellcome.ac.uk

• 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. 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. Website at: www.mrc.ac.uk.

Fifty years after the momentous discovery of the structure of DNA, which was the culmination of research by Medical Research Council scientists, Maurice Wilkins and Rosalind Franklin in London, and James Watson and Francis Crick in Cambridge, the world celebrates one of the most significant landmarks of 20th century science. For more information about events and news please visit the www.mrc.ac.uk or www.dna50.org.uk