Adding Your DNA To A Biobank Is A Noble Move -- But Is It A Wise One?

One new approach to teasing apart the complex relationships between genes and common diseases such as cancer, heart disease, asthma and diabetes is by creating huge biobanks of medical data and samples. The idea is that by tracking the health and habits of very large populations across many years, and then examining their DNA, it will be possible to spot factors in common. Here's a major biobank that is shortly opening up its holdings for research: 

On Techdirt.

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.

The UK Biobank Time-bomb

It sounds so exciting, so good:

UK Biobank is a long-term project aimed at building a comprehensive resource for medical researchers. The full project will get underway in 2006, when it will begin to gather information on the health and lifestyle of 500,000 volunteers aged between 40 and 69.

Following consent, each participant will be asked to donate a blood and urine sample, have some standard measurements (such as blood pressure) and complete a confidential lifestyle questionnaire. Over the next 20 to 30 years UK Biobank will allow fully approved researchers to use these resources to study the progression of illnesses such as cancer, heart disease, diabetes and Alzheimer’s disease. From this they hope to develop new and better ways of preventing, diagnosing and treating such problems.

Data and samples will only be used for ethically and scientifically approved research. Issues such as consent, confidentiality, and security of the data are guided by an Ethics and Governance Framework overseen by an independent council chaired by Professor Alastair V. Campbell of Bristol University.

But read the access policy, and you find this:

Access will not be permitted for police or forensic use except where required by court order. It is likely that UK Biobank will take steps to resist access for police or forensic use, in particular by seeking to be represented in all court applications for access in order to defend participants’ trust and public confidence in UK Biobank.

Since court orders can always be taken for granted given the right legislative framework, and since the current UK Government already has such a poor track record for invasive laws that create such frameworks, what this means in practice is that anyone taking part in this otherwise laudable scheme is creating a biological time-bomb.

Inside the main UK Biobank database will be their DNA, just waiting for somebody, someday - perhaps long after their death - to obtain that court order. Then, practically everything genomic about them will be revealed: genetic propensities, biological relationships, you name it. And, of course, it will provide the authorities with a reliable way of tracking them and, to a lesser extent all their children, for ever.

I am sure that the UK Biobank will fight this kind of use; and I am equally sure that they will lose. Which is why my DNA will only form part of such a database over my dead body. Probably literally.