UK Biobank this week outlined a new Ethics and Governance framework for its massive data-gathering exercise. The project aims to build a major research resource to improve prevention, diagnosis and treatment of illness by following, they hope, half a million volunteers aged 45-69 for many years. Volunteers' test results and questionnaire responses will be linked to their NHS medical records and other genetic data, to investigate the health effects of the relationship between genes and lifestyle. A UK Biobank spokesman said that the real benefits of their discoveries will be felt after 25-30 years.
The Biobank project has been deeply controversial with concerns being raised about the methodology and cost of the project, and about its heavy reliance on sometimes over-stretched NHS information and record-keeping systems.
Chief executive Professor John Newton said that participants in Biobank would not receive personalised health warnings relating to any specific health indicators that could be discovered in their data. General information about links between illness, genes and lifestyle will be made available as the research goes on, which participants can then discuss with a health practitioner. Paul Burton of the Biobank science committee said 'At the moment society is not yet used to the idea that genetic risk is just another form of risk - at the moment feeding back to individuals could cause a panic'.
This week plans for the international Public Population Program in Genomics (P3G) were unveiled. This information-sharing exercise hopes to bring together UK Biobank, CARTaGENE in Quebec, the Estonian national gene bank project and the GenomEUtwin project in Finland to 'create an open, common and accessible dataset' that the four projects can share, according to the director, Professor Bartha Knoppers of the Centre de Recherche en droit Public, in Montreal, Canada.