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Biobank project finally underway

UK's enormous prospective study of genes, environment, and disease begins subject recruitment

By | March 15, 2006

Despite ongoing criticisms, Britain's much-anticipated UK Biobank finally began recruiting participants this week, some nine years after the idea for the project was first proposed by the Wellcome Trust. "I'm aware of uninformed criticism of the study, but not of informed criticism," Biobank's principal investigator Rory Collins said at a press conference this week. "I believe there is very strong scientific support for a very large prospective study like this one." The £61 million study -- funded by the Wellcome Trust, the Medical Research Council, the Department of Health and the Scottish Executive -- is designed to allow researchers to probe the complex interplay between genes, environment, and disease in half a million people, but has been dogged by controversy from its earliest days. As far back as 2002, for example, politician Ian Gibson challenged the basis of the project, saying in a parliamentary debate that "it seems like dubious methodology to ask 50-year-olds what they had for dinner in their childhood." Similar questions have arisen time and again throughout the project's protracted gestation. Just weeks ago, in late February, The Guardian newspaper said that Alec Jeffreys, a geneticist at Leicester University and the inventor of genetic fingerprinting, considered the study to be very poorly structured. Biobank had a "lack of genealogy information, lack of pedigree information, [an] inability to carry out some of the standard genetic tests that one would do if you're trying to identify genes involved in a common disorder," the newspaper quoted him as saying. However, Jeffreys appears to have changed his position on the study, and the organizers of the project can quote plenty of other distinguished figures who now back the project, including Ian Gibson, former chair of the House of Commons Science and Technology Select Committee. "This is an important initiative that is now developing focus and which promises to provide an invaluable resource," according to a statement from Jeffreys provided to reporters by UK Biobank. Gibson, meanwhile, said that "Since?I've had more opportunities to discuss its aims, design and future plans?I am very confident that it will succeed." The first 3,000 volunteers for the project, all of whom will be aged 40 to 69, will be recruited this week in the English town of Altrincham, south of Manchester. They will answer a battery of survey questions, provide small blood and urine samples, and be asked to give permission for their health to be monitored over the coming decades through health service records. Their samples will be among the first to be stored at the Biobank's high tech facilities, including -80 C freezers in Manchester. "The aim is to produce a resource for life. Over the next ten to fifty years this will become increasingly valuable for medical researchers?to confirm or refute associations identified by other studies," Collins told reporters. The project's long incubation wasn't caused by overly stringent privacy controls, said Mark Walport, director of the Wellcome Trust. Instead, it was a result of the requirement for careful planning. "I would say this was one of the most rigorously peer reviewed projects we've ever funded," he told reporters. The UK project is in the vanguard of a global movement to establish large prospective studies of this kind. Similar projects, many of which are modelled on the Biobank, are being established in Canada, Norway, Sweden, Singapore, China, Mexico and the USA. Pooling data from all these various studies would be "very straightforward," Collins told The Scientist. "Many of the questions we're asking are very straightforward ones and many tests are standard," he said. In fact, a degree of international coordination is already happening, he said. The Biobank's advisory board includes researchers involved in other studies, including key figures from the 500,000-person study being planned by NIH. "In the long term, half a million people isn't too many," Collins said. "Ideally you'd like to have several million." By combining the populations of the UK and US studies with another 500,000 participants in China, 250,000 in Mexico City and so on, he said, "I suspect that there will soon be at least a few million." Stephen Pincock spincock@the-scientist.com Links within this article H. Gavaghans, "UK Biobank to go on the political agenda," The Scientist, November 11, 2002. http://www.the-scientist.com/article/display/13369/ Rory Collins http://www.ctsu.ox.ac.uk/~hps/biog_rc.shtml P. Hagan, "Biobank debate heats up," The Scientist, April 8, 2003. http://www.the-scientist.com/article/display/21245/ A. Jha, "500,000 people, a span of decades - and a waste of time and money?," The Guardian, February 23, 2006. http://www.guardian.co.uk/science/story/0,,1715896,00.html S. Pincock, "Tissue + Manchester = UK Biobank," The Scientist, August 2, 2004. http://www.the-scientist.com/article/display/14860/ S. Pincock, "Red tape tangles epidemiology," The Scientist, January 31, 2006. http://www.the-scientist.com/news/display/23022/ M. Andersen, "A 500,000-person study?" The Scientist, May 26, 2004. http://www.the-scientist.com/article/display/22202/
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