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.