LONDON--Plans shifted into high gear this week for a huge repository of information on the genetics and lifestyle of the population of the United Kingdom. The $66 million BioBank UK hopes to collect data from half a million middle-aged Britons over the next decade. But a public battle is looming over how much access companies should have to the database.
The project, first proposed more than 2 years ago, aims to flesh out factors that influence common diseases such as cancer, diabetes, and heart disease (Science, 18 February 2000, p. 1184). Today the Wellcome Trust, a mammoth biomedical charity, and the British government announced their joint financial backing for BioBank, which will collect blood samples and information on diet, smoking, and other lifestyle choices from 500,000 volunteers aged 45 through 69, then track their health for at least 10 years. Researchers will mine the database for disease-related patterns, such as genes that heighten vulnerability to the cancer-causing effects of smoking.
The study is a logical follow-up to the human genome project, says Wellcome Trust director Michael Dexter. "It is part of an overall strategy to really ensure that the [sequencing] research we've done does have health benefits," he says. An oversight committee, to be appointed by BioBank's funders, will hammer out the rules for access to the data. Dexter argues that industry researchers must be given access for the project to succeed. "At the end of the day," he says, "they're the ones who develop the drugs."
The rules are expected to come under intense scrutiny. "A lot more work needs to be done on the relationship between BioBank and industry" to ensure that benefits flow back to the public, asserts David King, coordinator of Human Genetics Alert in London. The watchdog group is lobbying for a ban on patents based on genetic discoveries that come out of the database. The group is also pressing for BioBank to allow volunteers to opt out of research they may object to, such as studies on behavioral genetics.
BioBank has time to address such issues: Full-scale enrollment of volunteers is not likely to get under way until 2004, says a Wellcome Trust spokesperson. The real test will come then, when doctors start pitching the project in earnest to their patients. "It is an opportunity to get people on board for this kind of new biology," says Dexter.