21 April 2008

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.


Anonymous said...

thanks for the info - i just got an invite to "the plan" - and am surfing around looking for non biobank web site information.

there certainly are a few questions to be asked.

will i help ? - not sure - given the current faith in the establishment, society has a right to legally binding contracts under circumstances such as these - not sure if they'll be offering one.

Glyn Moody said...

I haven't been invited yet, but if I am, I will certainly refuse for the reasons noted.

The current UK political climate of mass surveillance, ID cards, databases etc. is not the right one for this kind of endeavour, however laudable it is in theory.

Anonymous said...

There are indeed some serious privacy concerns here. I’ve just had my invitation letter. When it comes to reassuring any concerns I may have had about protecting my privacy, they didn’t get off to a good start.

Apparently they got my name, address, and date of birth from the NHS.

Excuse me?

I don’t remember giving the NHS my permission to share that kind of data with third parties. I shall be finding out who the NHS data controller is and having a word. They claim that it’s compliant with the data protection act, but I find that hard to believe.

Sorry, this may be a worthy research project, but they have just totally destroyed any chance they may have had of my trusting them.

Glyn Moody said...

Thanks for that update; as you rightly say, they don't seem to have got the hang of this privacy lark, do they?

Doesn't inspire confidence.

Anonymous said...

I've received an invitation. I've said yes. It might help medical science and if they can find any interesting information about me they're more than welcome to it.

Glyn Moody said...

I applaud your public spirit - and hope they don't decide to play lose and free with your info...

Anonymous said...

Who cares? They can have all the genetic info they like about me and can pass it freely around the world. I wouldn't care if it was completely open either. The value of understanding my genetics would compensate for any over zealous insurance company ( which I doubt would happen despite scattered examples). This obsession with privacy is worrying. Do you also object to CCTV cameras in our high streets?

Glyn Moody said...

sure, it's a personal decision to weigh up the benefits and risks.

And yes, I most certainly do object to CCTV cameras in the streets...

Anonymous said...

Why do you object to CCTV? Something proven to save lives and provide security? How many people have been harmed by their presence? Sure you can argue it drives crime elsewhere but overall crime is reduced.

Glyn Moody said...

It doesn't save lives or help security:


all it does is reduce privacy - it's a total failure.