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Before
the age of 15, how many times did you suffer sunburn
that was painful for at least 2 days or caused
blistering? How many children have you fathered? Do
people say that you look younger than you are, older
than you are, or about your age? How close to fact or
fiction are your answers?
These are three examples of the 250 or so questions put
to participants in UK Biobank, a research project aiming
to enlist 500000 people aged between 40–69 years, and
costing about £62 million so far. By analysing the
answers; examining current and future medical histories;
measuring baseline blood pressure, height, weight, grip
strength, bone density, and lung function; and taking
blood and urine for longterm storage and future tests,
“researchers may be able to work out why some people
develop particular diseases while others do not”.
Perhaps that is what the eight or so healthy looking,
white, middle-aged people who gathered on a damp
afternoon in London hoped. Certainly, they are unlikely
to benefit directly. They relinquish all rights to their
blood and urine samples, and give permission for access
to their medical records at any time, even after death.
No results are given, except for the baseline
measurements taken at the visit, even if a
life-threatening illness were discovered. All that, and
participants face a lack of privacy when completing the
computer based questionnaire, and when answering more
detailed questions about medical history.
Participation in UK Biobank is voluntary, and can be
withdrawn at any time. The consent process relies on
reading the information leaflet sent in the post and
then ticking seven boxes on a computer screen on
arrival. The assumption is that consent will be given.
Staff are on hand, but the lack of privacy dissuades
discussion.
The success of UK Biobank depends on the right questions
being asked, the continuing altruism of 500 000
volunteers, and for what the samples are tested. Let’s
hope that the data generate useful associations to
predict and prevent disease in future generations. That
would help transform an unpleasant afternoon into a
useful one.
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