York academics to help shape access to medical database
Posted on 4 December 2007
The UK Biobank project raises numerous scientific, ethical and logistical issues and its success will depend on an appropriate and robust policy for third party access
Dr Graham Lewis
UK Biobank is one of the biggest and most detailed public health research initiatives of our time. It involves collecting blood and urine samples, plus health and ‘lifestyle’ information, from 500,000 individuals aged between 40 and 69 years, and relating it to subsequent disease, cause of death and other factors over a period of 30 years.
The purpose of the UK Biobank project is to set up a resource to support a range of research to improve the prevention, diagnosis and treatment of illnesses and the promotion of health throughout society.
But the use of the samples and data by third parties, such as the pharmaceutical industry and academic researchers, raises a range of ethical questions such as, what should the terms of access be and what mechanism should be adopted for sharing the benefits from research? The new study by a team from the Science and Technology Studies Unit (SATSU) in the University’s Department of Sociology will help to ensure that policies already established by UK Biobank remain fit for purpose in the future.
The study is funded by the UK Biobank Ethics and Governance Council (EGC), an independent monitoring body which is funded by the Wellcome Trust and the Medical Research Council.
Dr Graham Lewis, one of the SATSU research team, said: "The UK Biobank project raises numerous scientific, ethical and logistical issues and its success will depend on an appropriate and robust policy for third party access."
Professor Graeme Laurie, Chair of the EGC said: "The role of the EGC is to advise and monitor UK Biobank in developing the best possible policies for managing the research resource. This important study will provide us with a better understanding of public attitudes towards access issues, and this will feed directly into our advice to UK Biobank."
ENDS
Notes to editors:
- More information on UK Biobank at www.ukbiobank.ac.uk
- More information on the UK Biobank Ethics and Governance Council at www.egcukbiobank.org.uk/
- The Science and Technology Studies Unit, in the Department of Sociology, at the University of York, is a specialist unit dedicated to rigorous analysis of the social dynamics informing contemporary and prospective science and technology. It has an established international reputation as a centre of excellence in three areas: the sociology of the biosciences, mobilities, informatics and space, and science and technology governance. SATSU was founded by Andrew Webster in 1988 and has grown now to a core staff of 8 and 11 Associate Research Fellows within the UK and overseas. It has also ongoing postgraduate programmes at Masters and PhD levels. The Unit was also a Marie Curie Training Site between 2001-5 for a postgraduate programme on genetics and society funded by the EC. The Wellcome Trust is the largest charity in the UK. It funds innovative biomedical research, in the UK and internationally, spending around £500 million each year to support the brightest scientists with the best ideas.
- The Wellcome Trust supports public debate about biomedical research and its impact on health and wellbeing. The Medical Research Council is dedicated to improving human health through excellent science. It invests on behalf of the UK taxpayer. Its work ranges from molecular level science to public health research, carried out in universities, hospitals and a network of its own units and institutes. The MRC liaises with the Health Departments, the National Health Service and industry to take account of the public's needs. The results have led to some of the most significant discoveries in medical science and benefited the health and wealth of millions of people in the UK and around the world. www.mrc.ac.uk