One million people in medical gamble

January 18, 2006

You might donate blood to help save someone's life. But would you donate your blood, your DNA, and your most intimate medical secrets on a promise that it may help save a life years from now?

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.

Following the failure of this "Icelandic health database", Decode launched more focused searches for genes linked to disease, for which it recruited volunteers. Over half the Icelandic population have contributed either their DNA or detailed medical records to such projects, which have yielded more than a dozen genes linked to illnesses that include heart and artery diseases, stroke, asthma, prostate cancer, diabetes, obesity, osteoporosis and schizophrenia. A drug to prevent heart attacks is now in the final stages of a clinical trial, and other trials are under way with new drugs to combat asthma and peripheral artery disease. "These are the first compounds to be tested anywhere in the world targeting the product of disease genes isolated in the common diseases," says Edward Farmer of Decode.

The Icelandic studies focused on spotting gene variants in people who already have specific diseases or family histories of disease, and comparing them with those of healthy people. The proposed British and American studies are far more ambitious, as they will recruit people who are healthy at the outset and then wait to see which of them falls ill. Scientists will record environmental factors, such as people's diets, in real time, rather than relying on patients remembering what they ate in the past, in the hope this will help reveal factors other studies miss.

Biobank's chief executive, Rory Collins, likens this study to classic epidemiological investigations by researchers like Richard Doll, who showed that smoking causes lung cancer. "What we are doing is old science, just like Doll, but on a bigger scale," he says. In fact the scale of both the US and British projects is unprecedented, with each hoping to recruit around 500,000 volunteers.

One major difficulty lies in collecting reliable environmental data on what people eat and drink throughout their lives, or what chemicals or radiation they are exposed to and how much exercise they take. Get this wrong and the study will fail, as it will become impossible to tell whether an illness has been caused by someone's genes, their environment, or a combination of the two. Equally, if a doctor mistakenly concludes that someone has had a heart attack when they've really had angina, for example, this could potentially skew conclusions drawn from all the genetic and environmental data linked with the diagnosis.

To help deal with such problems, the organisers of the US project are considering using microchip-based devices such as rings, bracelets and body patches to keep a continuous check on volunteers' heart rate and blood oxygen levels. Participants' cellphones could be rigged up to transmit data on physiology and diet, and microchip-based sensors could be placed around the body to record other data such as exposure to radiation, or even what they consume, including alcohol and tobacco.

The £61 million UK Biobank project, funded by the UK Medical Research Council, the Wellcome Trust and the government health ministry, will rely more heavily on health records and diagnoses of family doctors to keep tabs on its subjects. It will also take detailed recordings of subjects' body fat, blood pressure and weight, use lifestyle questionnaires, and take blood and urine samples when people are recruited into the study.

However, these projects face a dilemma. If information about subjects' lifestyle and environment is too sparse or unreliable, the study's value will be limited or non-existent. But if the measurements on volunteers are intensive enough to be worthwhile, then critics can argue that people's privacy is being invaded. Subjects' employment prospects or insurance premiums might be at risk if data about their likely genetic fate leaked out.

Biobank says it will encrypt its data, and make it anonymous so that it can't be traced back to the original donor. It will make such data available to researchers from other organisations that have received approval from its ethics board. A similar encryption process is expected in the US.

In both studies, volunteers will be required to give open-ended consent for their records and samples to be used in any study, regardless of what it is researching. So, for example, if Biobank's ethics board approves, an individual's medical details might one day be used to study controversial areas of research, such as the genetics of antisocial behaviour or intelligence, despite each volunteer not being aware in advance that this may happen.

Some critics claim that these projects can never achieve their stated aims. "The Biobank project is based on the flawed idea that you have a single gene combining with a single environmental factor leading to a single disease," says Helen Wallace of the UK-based lobby group GeneWatch. "It is dangerous to assume that the project will deliver major benefits for health." She fears that spurious and misleading results will emerge because the environmental measurements will be too patchy.

Despite such misgivings, the organisers of the two projects are banking on finding hundreds of thousands of volunteers for each project. In the US, participants will be given the option of being told about findings that affect their health, such as whether they are unknowingly developing cancer or carrying HIV. Biobank, however, has decided not to give out such information. In this way, it hopes to ensure that volunteers are not penalised by insurance companies, for example, which may require customers to disclose the results of any genetic tests.

"We are asking people to donate an hour of their time plus samples to establish the causes of diseases," says Collins. "It's a gift, and they get no information back, good or bad." Whether such altruism can prevail over personal privacy concerns might make an interesting study in itself.
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