IF ALL goes to plan, sometime next year British celebrities and parliamentarians of a certain age may find themselves being asked to make an unusual donation to a worthy cause. Not of money or time, but something more personal: a sample of blood, and access to their medical records. The government scientists requesting these gifts will be hoping for a show of trust and generosity strong enough to persuade nearly half a million ordinary Britons to make similar donations. If they succeed, the result will be Biobank, the largest collection of DNA samples linked to medical records in the world.
Britain is already home to the world’s biggest national store of forensic DNA samples for tracing crime suspects. Biobank, whose lead researchers were appointed this week, is a project on a similar scale, but more complicated and even more controversial. The donors, aged between 45 and 69, will all give a blood sample, fill in a lifestyle questionnaire, and allow the researchers indefinite access to their medical records (they may later withdraw consent for this). As many as 23 universities will be involved in collecting and processing the samples and information, which will be stored in duplicate at separate sites. No fire is going to be allowed to destroy this great library.
And all that is just for starters. As Biobank’s middle-aged donors grow old, this mountain of DNA sequences and health records will be repeatedly trawled by researchers eager to trace the genes and lifestyle factors that conspire to cause the cancers, heart attacks and other complex diseases that eventually finish off so many of us. Fans of the project see it as a pioneering assault on the links between nature, nurture and disease. Detractors see it as a speculative or even perilous waste of £45 million of taxpayers’ money. Mention the B-word at gatherings of British medical scientists and it’s surprising how many start muttering darkly into their drink. Should we be reconsidering how – or even whether – this project is carried out before the juggernaut becomes unstoppable?
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A couple of decades ago all scientists had to worry about was whether their experiment was working. These days they have to get public opinion on side, too. Biobank has had no easy ride. The pressure group GeneWatch is warning that people could sign up without fully understanding the implications, and that sensitive personal records could be hacked into or leaked. Such issues are important, of course, and they arise with any medical research. What’s different with Biobank is its sheer scale. Other countries, including Iceland and Sweden, have been quicker off the mark with similar databases, but they don’t cover so many people. Biobank’s organisers will certainly have their work cut out ensuring the project has the right technology and safeguards to guarantee donor privacy, but there is no fundamental barrier to achieving this.
Campaigners also fear that Biobank will encourage commercial patenting of swathes of our genome as well as promoting genetic determinism, the idea that every disease is caused by a single faulty gene. Biobank is clearly not the cause of these problems, but its high profile and vast scale highlights them. Gene patent laws are a globally inconsistent mess, and companies that access the database may well use it to patent sequences linked to disease. The irony is that the more successful Biobank is at revealing the links between genes and disease, the more likely it is to contribute to the patent mess.
Another reason some British researchers are anti-Biobank is less high-minded: they think it has robbed them of funding. The Medical Research Council (MRC), Biobank’s chief backer, has lately been turning down many top-quality grant applications, and the obvious scapegoat is the greedy Biobank that is gobbling up £20 million from the MRC in start-up costs alone. This is not really fair. The government gave the MRC new money to set up Biobank, and in any case the scale of the MRC’s funding shortages dwarfs Biobank’s costs. The scheme is, however, symptomatic of a wider problem within science: the perception that big is beautiful. British medical researchers think the MRC isn’t interested in small projects, the House of Commons Science and Technology Committee recently found.
Of course, once Biobank is up and running, it will spawn many valuable small studies, as well as large ones. It could attract funds and resources from all over the world, as international researchers eye its rich data. But that doesn’t let the British government off the hook. It should follow through on its past fine words about the importance of science funding, and increase research budgets accordingly. With the MRC in such a mess, there has never been a better time.