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Editorial: The Domesday project

A huge project to uncover the interplay between genes and environment is ready to go, but how much personal information should we reveal for the common good?

WE ALL have to die. But when the time comes, will it be because we were born with the wrong genes, grew up in poverty, or spent our adult lives smoking, eating too much and exercising too little?

Chances are it will be a combination of genetics and environmental influences: teasing them apart is one of science鈥檚 great challenges. We want to know how genes interact with the environment, and use that knowledge to prevent disease and premature death.

In the coming weeks, researchers in the UK will take a big step towards meeting this challenge. After five years of discussion, an ambitious project to uncover the interplay between genes and environment is ready to roll. A similar project is being planned in the US. The British project, called 鈥淏iobank鈥, will be seeking out 500,000 volunteers willing to give DNA samples and answer questions about their lives, environment and diet. The volunteers will get no direct benefit, save the knowledge that they are helping to illuminate the causes of disease (see 鈥淥ne million people, one medical gamble鈥)

It sounds straightforward. But it is not. The easy bit is extracting and storing biological samples. Far trickier is obtaining reliable data on people鈥檚 lifestyles and environments. Biobank鈥檚 organisers are hoping volunteers鈥 lives won鈥檛 change too much after they enrol. Then, rather than monitor hundreds of thousands of people over 30 years, they plan to recall a small proportion of donors periodically to check how their lifestyles have altered, and apply that learning to the rest.

The problem for researchers is how much personal information to look for. If they fail to gather enough, critics will argue that any findings are not robust. If they probe every part of donors鈥 lives, they will be accused of violating personal privacy. Yet it is becoming clear that illnesses can depend on factors that are easily overlooked, including subtle ones such as the degree of control a person has over his or her life. The researchers need to probe as far as they appropriately can.

New ideas are emerging that may increase the flow of information in unobtrusive ways: technology to monitor diet directly, for example, and maps that reveal levels of exposure to toxic compounds or infectious agents in different locations. While planners of the US study mention such innovations, their UK counterparts do not 鈥 perhaps they expect them to be too costly. But they, and their sponsors, need to think long and hard about this. The one thing guaranteed to undermine these projects is too little information about its subjects. Skimp on this and it is not worth even starting.