Social scientists at the University of York are to investigate public attitudes on how medical information on hundreds of thousands of people is managed in the UK Biobank.
The study will particularly look into the rules governing third-party access to the data.
UK Biobank is currently one of the biggest and most detailed public health research initiatives in Britain.
It involves collecting blood and urine samples, plus health and ‘lifestyle’ information, from 500,000 individuals aged between 40 and 69 years.
This data is then related to subsequent disease, cause of death and other factors among the public over a period of 30 years.
The UK Biobank project aims to support research to improve the diagnosis, prevention and treatment of illnesses and the promotion of health throughout society.
The new study is by a team from the Science and Technology Studies Unit (SATSU) in the University’s Department of Sociology.
It will aim to ensure that policies already established by UK Biobank remain relevant in the future.
The team will look closely at how “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 study will be funded by the UK Biobank Ethics and Governance Council (EGC), an independent monitoring body which in turn is financed 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 added: “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.”
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