20 January 2006
ByAppeared in BioNews 342
A project to collect DNA samples and medical information from half a million Britons is to be launched within weeks, New Scientist magazine reports. The UK Biobank, hosted at the University of Manchester, wants to recruit up to 500,000 volunteers aged between 45-69 years. The aim of the project, jointly funded by the UK's Medical Research Council (MRC), Department of Health, the Scottish Executive and the Wellcome Trust, is to study the role of genes and environment in health and disease. It hopes to identify factors involved in common diseases such as heart disease, cancer, Parkinson's disease and diabetes. A similar initiative is being planned by the National Human Genome Research Institute in the US.
Biobank has attracted criticism from some scientists, who have expressed concerns over the cost and effectiveness of the project. In 2004, DNA fingerprinting pioneer Sir Alec Jeffreys said he had 'a real concern' that nothing useful would come out of the research. An editorial in New Scientist echoes these fears, focussing on the difficulties of getting reliable data on people's lifestyles and environments. It says that the project needs to gather enough personal information to make any findings robust, but without violating the privacy of its participants.
The organisers of the US project are apparently considering the use of microchip-based devices to address the problem of collecting detailed lifestyle information - rings, bracelets and body patches that monitor heart rate or measure exposure to radiation, for example. Biobank will rely on questionnaires to obtain data on lifestyle, although it will take blood and urine samples from new study recruits, as well as detailed recordings of weight, blood pressure and body fat.
Both the US and UK banks will anonymise the data gathered, so that it can't be traced back to volunteers. But the two projects will differ in their approaches to giving participants any information discovered during the research, New Scientist reports. In the US, volunteers will be given the option of being told about findings that could affect their health, such as whether they are developing cancer. But Biobank has decided not to do this, to ensure that participants are not subject to any discrimination, for example by insurance companies.
Biobank chief executive Rory Collins told the magazine: 'We are asking people to donate an hour of their time plus samples to establish the causes of diseases', adding 'it's a gift, and they get no information back, good or bad'.