Huge Biobank project launches despite critics

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Huge Biobank project launches despite criticsBritish family doctors have started recruitingsubjects for an ambitious effort to probe theinterplay of genetic and environmental factorsthat cause disease.

Researchers hope that half a million peoplewill donate blood and urine samples, and giveaccess to their medical records,as part of UK Biobank. This£61-million (US$105-million)project launched on 13 March,funded by the Medical ResearchCouncil and the Wellcome Trust.Critics question whether it willgive value for money. But the project’s orga-nizers say it has enormous research potential.

Participants will be weighed and measured,and answer questions on topics such as alcoholintake and family medical history. Details willbe held in a database and linked to records col-lected by the National Health Service (NHS).

Thousands of cases of conditions such asheart disease and cancer are likely to develop,

and researchers will be able to search the data-base for underlying genes and lifestyle choices.

Critics, including members of the House ofCommons Select Committee on Science andTechnology, say health records alone can be apoor guide to the conditions a person suffers

from. Medical journals haveasked whether enough cases ofdisease will develop for resultsto be statistically meaningful.In contrast to some othergenetic-database projects,however, critics are not con-

cerned about data-privacy and ethical issues.UK Biobank’s chief executive, Rory Collins,

an epidemiologist at the University of Oxford,says complaints stem in part from a misunder-standing of the scheme. It might make sense tostudy the families of ill people if disease geneswere the main target, he says, but they are not.

“The primary use will be to compare peoplewho develop disease with those that don’t,” he

says. Researchers will then be able to examinethe lifestyle and genetic factors that differenti-ate the two groups.

Collins estimates that scientists will want tostart mining the database in about ten years,when several thousand cases of diseases willhave emerged. He adds that changes in theNHS computer system should have made iteasier for scientists to use for research by then.

Access will be controlled by UK Biobank,which will vet applications and coordinategroups to minimize the cost of accessing sam-ples. These will be frozen and split betweentwo locations, to provide a back-up.

The UK project will be tracked in countrieswith similar schemes. Canada, Iceland andJapan have set up smaller biobanks. Workbegan in 2001 on a project in Estonia, wherethe government wants to collect genealogical,health and DNA data on a million citizens — itaims to have data on some 100,000 by 2009. ■

Jim Giles

“Complaints stem in part from amisunderstanding of the scheme.”

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