Half a million people will be expected to do just that in the coming months, with another half a million people to follow, as two huge medical research projects get under way in the UK and US. The British project, called Biobank, is due to start within weeks, after five years of preparation. The American project, announced in 2004 by the National Human Genome Research Institute in Bethesda, Maryland, is still at the planning stage.
Both of the projects aim to revolutionise medical research by gathering information that will allow scientists to study in unprecedented depth how our genes and environment interact over the years to cause disease. That could one day lead to new treatments for disorders such as cancer, heart disease, asthma, multiple sclerosis and cystic fibrosis. But the projects are not without their critics, who say they could produce misleading results and raise fundamental questions about who should own our medical details and have access to them. These details not only document our medical past, but might also reveal which medical conditions we and our relatives are likely to suffer from in the future.
Similar privacy fears surfaced more than five years ago, when the Icelandic government allowed a Reykjavik-based company called Decode Genetics to commandeer the genetic, medical and family histories of the entire population of Iceland. The medical details of 270,000 people were to be entered into a huge database, supposedly encrypted to protect their identities (New Scientist, 15 July 2000, p 42). The scheme was declared unconstitutional after citizens, doctors and opposition groups in the country complained that individuals had not given explicit consent to their details being used in this way.