Banking on the future in the UK

After a successful pilot, the UK Biobank has received full funding and will soon begin its massive longitudinal study of genetics and long-term health in the UK.

From the (excellent, clear) subject information pamphlet (available here as a pdf), a summary explanation and raison d’etre:

UK Biobank is a medical research study of the impact on health of lifestyle, environment and genes in 500,000 people currently aged 40-69 from all around the UK. This age group is being studied because it involves people at risk of developing serious diseases – including cancer, heart disease, stroke, diabetes, dementia – over the next few decades. …

Scientists have known for many years that our risks of developing different diseases are due to the complex combination of different factors: our lifestyle and environment; our personal susceptibility (genes); and the play of chance (luck). Because UK Biobank will involve thousands of people who develop any particular disease, it will be able to show more reliably than ever before why some people develop that disease while others do not. This should help to find new ways to prevent death and disability from many different conditions.

A noble purpose indeed.

The setup — genetic samples and histories taken from a huge number of people, whose medical status is then followed indefinitely — will generate a rich resource for data mining of all kinds, not least of which would be a study of the impact of genes and lifestyle on longevity and age-related illness, and a high-throughput search for biomarkers of aging.

With data sets of this size, it’s hard to imagine any one centralized body being able to ask and answer every conceivable question, so I hope that measures are being taken to guarantee access by the world scientific community to this invaluable resource (while always preserving the privacy of subjects, of course), as was done for the International HapMap Project.

It’s not clear from the web site how they’re going to handle data access, though I did find this in the subject information document I cited above:

Information and samples from UK Biobank participants will be available only to medical researchers who have relevant scientific and ethics approval for their planned research. This could include researchers who are working in other countries and in companies looking for new treatments.

So that’s promising. I have made an inquiry to the UK Biobank on this very issue, and will update when I hear back.