Why You Should Boycott the UK Biobank

I first came across proposals for the the UK Biobank when I was writing Digital Code of Life in 2004. It's an exciting idea:

UK Biobank aims to study how the health of 500,000 people, currently aged 40-69, from all around the UK is affected by their lifestyle, environment and genes. The purpose of this major project is to improve the prevention, diagnosis and treatment of a wide range of illnesses (such as cancer, heart disease, diabetes, dementia, and joint problems) and to promote health throughout society.

By analysing answers, measurements and samples collected from participants, researchers may be able to work out why some people develop particular diseases while others do not. This should help us to find new ways to prevent early death and disability from many different diseases.

It's all about scaling: when you have vast amounts of information about populations, you can find out all kinds of correlations that would otherwise be obscured.

But as I noted in my book:

Meanwhile, the rise of biobanks - massive collections of DNA that may, like those in Iceland and Estonia, encompass an entire nation - will create tempting targets for data thieves.

This was well before the UK government started losing data like a leaky tap. Naturally, the UK Biobank has something to say on this issue:

Access is kept to a minimum. Very few staff have access to the key code. The computers which hold your information are protected by industry strength firewalls and are tested, so they are safe from hackers.

Sigh. Let's hope they know more about medical research than they do computer security.

But such security intrusions are not my main concern here. Again, as I wrote four years ago:

Governments do not even need to resort to underhand methods: they can simply arrogate to themselves the right to access such confidential information wherever it is stored. One of the questions addressed by the FAQ of a biobank involving half a million people, currently under construction in the United Kingdom, is: "Will the police have access to the information?" The answer - "only under court order" - does not inspire confidence.

I gathered from this blog post that invites are now going out, so I was interested to see what the UK Biobank has to say on the subject now that it has had time to reflect on matters:

Will the police have access to the information?

We will not grant access to the police, the security services or to lawyers unless forced to do so by the courts (and, in some circumstances, we would oppose such access vigorously).

"In some circumstances" - well, thanks a bunch. Clearly, nothing has changed here. The UK government will be able to waltz in anytime it wants and add those temping half a million DNA profiles to the four million it already has. After all, if you have nothing to hide, you can't possibly object.

Given the UK government's obsession with DNA profiles, and its contempt for any idea of privacy, you would be mad to sign up for the UK Biobank at present. Once your DNA is there (in the form of a blood sample), the only thing keeping it out of the government's hands is a quick vote in a supine Parliament.

Much as I'd like to support this idea, I won't have anything to do with it until our glorious leaders purge the current DNA database of the millions of innocent people - and *children* - whose DNA it holds, and shows itself even vaguely trustworthy with something as precious and quintessential as our genomes. And if the UK Biobank wants any credibility with the people whose help it needs, it would be saying the same thing.