Who would you trust with your bio-data?

It’s not just what’s in the database that makes it special, but also how easily researchers can get information out of it:

“The crucial ingredient, however, may be open access. Researchers around the world can freely delve into the UKB data and rapidly build on one another’s work, resulting in unexpected dividends in diverse fields, such as human evolution. In a crowdsourcing spirit rare in the hypercompetitive world of biomedical research, groups even post tools for using the data without first seeking credit by publishing in a journal.”

Are the UKB and its funders (which include the Wellcome Trust and the UK government) missing a trick? Why not commercialise such a valuable data source instead of giving it away?

That, however, is a very low dimensional way of thinking, one that ignores the benefits of sharing:

“‘The U.K. is getting all of the world’s best brains’ to study its citizens, says Ewan Birney, director of the EMBL European Bioinformatics Institute in Hinxton, U.K., and a member of the UKB’s steering committee.’”

It also burnishes the reputation of the UK as a world centre of excellence in bioscience – not to mention a place where the ultra-patient investments of the public voluntary sectors can happily coexist and cooperate with those of the private sector.

Not so long ago, open access, or ‘open source’, was the buzzword of the digital age and “information wants to be free” its motto. The success of operating systems like Linux and websites like Wikipedia seemed to provide all the proof needed that open source was the future.

But that was before the likes of Facebook and Google showed how ostensibly free services could be used to build trillion dollar businesses on the basis of relentless data extraction and commercialisation. Indeed, in controlling data flows, they have essentially privatised whole chunks of the internet, creating gated marketplaces in the process.

Thus as well as its direct contribution to scientific research, the UKB also serves as a vital reminder that profit-hungry data-hoarding is not the only way.

With the giants of Silicon Valley pushing into healthcare and technological progress increasing the speed and affordability of harvesting genetic data, can the UKB model hold out? In the era of ‘the quantified self’ will we surrender our medical data to the tech giants as easily as we’ve surrendered our social and consumer data?

There are reasons to hope that Britain in particular can hold back the tide. As well as an impressive range of private, public and independent research institutions, there is our trump card: the National Health Service.

Like all healthcare systems, the NHS is riddled with various inefficiencies and dysfunctions. It should not be above criticism, but even the NHS-sceptics ought to recognise just how well-placed it is for the era of biomedical big data.

Firstly, it is a national health service – a single organisation, providing a broad spectrum of healthcare services to a large and diverse population. Though the data already in the UKB is immensely valuable, it represents a tiny fraction of the potential resource.

Secondly, the NHS is trusted and loved by the people it serves. That goodwill means that, as a nation, we’re willing to help as well as be helped – for instance, by giving blood. I doubt that millions of us would be willing to donate our erythrocytes to a commercial concern. It is the same goodwill that could persuade millions wore us to become data donors.

Thirdly, the NHS provides an answer to concerns about how our medical data might be used – and especially our genetic data. The nightmare is that if the genes of every individual were to be sequenced and recorded, a ‘genetic underclass’ would emerge – denied affordable medical insurance because of what’s in their DNA. The NHS, however, is free at the point of need to every citizen regardless of genetic inheritance.

Long-term projects such as the UKB also have a reassuring record of anonymising and protecting its donors’ data. According to Kaiser and Gibbons, organisations accessing the UKB have to “sign a legal agreement not to try to reidentify any participant”.

This good practice needs the full backing of the state. British policy makers should be striving to establish the UK not only as the world leader in medical big data, but also in medical confidentiality. The two objectives may be in tension with one another, but they also need to be reconciled. The more that law-abiding citizens can be confident that their own genetic information will not, and cannot, be used against them, the more they will be ready to share it with scientists.

Ultimately, genetic research depends upon genetic privacy.

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Peter Franklin is Associate Editor of UnHerd. He was previously a policy advisor and speechwriter on environmental and social issues.

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