The methods of the UK Biobank project are criticised in an Editorial in this week's edition of The Lancet.
The UK Biobank is a research project aiming to enlist 500,000 people aged between 40 years, and costing about £62 million so far, and uses questions, and medical tests and histories. Examples of the questions asked are: Before the age of 15, how many times did you suffer sunburn that was painful for at least 2 days or caused blistering? How many children have you fathered? Do people say that you look younger than you are, older than you are, or about your age? The project hopes to discover 'why some people develop particular diseases while others do not'.
The Editorial says: "Perhaps that is what the eight or so healthy looking, white, middle-aged people who gathered on a damp afternoon in London hoped. Certainly, they are unlikely to benefit directly. They relinquish all rights to their blood and urine samples, and give permission for access to their medical records at any time, even after death. No results are given, except for the baseline measurements taken at the visit, even if a life-threatening illness were discovered. All that, and participants face a lack of privacy when completing the computer-based questionnaire, and when answering more detailed questions about medical history."
Whilst acknowledging that participation in UK Biobank is voluntary, the Editorial criticises the consent process for 'the assumption that consent will be given', and for its lack of privacy. The Editorial concludes: "The success of UK Biobank depends on the right questions being asked, the continuing altruism of 500 000 volunteers, and for what the samples are tested. Let's hope that the data generate useful associations to predict and prevent disease in future generations. That would help transform an unpleasant afternoon into a useful one."
The Lancet Press Office T) +44 (0) 20 7424 4949 E) pressoffice@lancet.com
For full Editorial, see: http://press.thelancet.com/editorials0404.pdf
Journal
The Lancet