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Mother of all studies claims half a million Britons

The world's biggest health study will shortly wind up recruiting, having today passed the 500,000 subject mark – persuading one in fifty Britons aged 40-69 to let researchers follow their health for the next 30 years.

The £66 million , backed by all the major institutions of British medical research, will "generate new knowledge about relationships between health, disease, genes and environment for many years to come", according to Sir Mark Walport, Director of the Wellcome Trust.

The study aims to be as deep as it is wide, with patients followed in considerable detail. Each has provided samples of blood, urine and saliva, and answered questionnaires on diet, exercise, family and personal history. Each has undergone a battery of tests including lung function, arterial stiffness, bone mineral density, grip strength, brain function, intraocular pressure, sight and hearing.

Much of the analysis won't be happening for at least a decade. But after that, organizers expect a steady stream of revelations in everything from cancer to heart disease to diabetes and arthritis. Needless to say, with their similar genetic heritage, many Canadians can expect Biobank will generate findings relevant to their lives. The study's ethical code dictates sharing anonymized data with all credible foreign researchers.

A key function of Biobank is to act as a gene database. As the NHS's reporting system picks up subjects' health woes, their samples will be analyzed to look for genetic correlations. But participants have been told they won't be getting any genetic analysis back. In fact, they don't stand to gain personally in any way. One striking feature of the study is that even if it detects evidence of illness in participants, whether through blood or urine samples, or because they have genes that turn out to be high-risk, Biobank won't inform the affected patients or their physicians.

One reason for this, the organizers say, is to stop insurance companies from penalising study volunteers. Insurance contracts often legally require purchasers to disclose test results they know, but not those they don't.

But a major ultimate goal of the Biobank is to find the links between DNA and diseases, and disseminate that knowledge as widely as possible. One suspects that at some point, the insurance companies are going to get involved in that process.

This morning, as they celebrated the recruiting of the half-millionth Biobank recruit, the great and the good of British medical research were effusive in their praise of these “local heroes” who will give so much of their time over the next 30 years for no obvious personal benefit. But hang on a minute – if they're all altruistic heroes, then how can they be a representative sample of the British population?

2 comments:

sharon (aka Purley Quirt) said...

'One striking feature of the study is that even if it detects evidence of illness in participants, whether through blood or urine samples, or because they have genes that turn out to be high-risk, Biobank won't inform the affected patients or their physicians.'

"situational ethics"... the hallmark of a declining civilization

said...

That's not the only shockingly lax part of the ethics of the UK Biobank study. I've blogged about it at http://dianthus.co.uk/uk-biobank.