>    Subject: NEWS: UK tiptoes through ethical minefield
>    From: Murray Charters <[log in to unmask]>
>    Date: Tue, 10 Jul 2001 13:02:32 -0700

UK tiptoes through ethical minefield
By Ben Hirschler

LONDON: British scientists are tiptoeing through an ethical
minefield as they prepare to build the world's biggest genetic
database.

The study, which will contain DNA samples from 500,000 adults,
is a unique opportunity to examine the genetic factors which
underpin a host of diseases from asthma to Alzheimer's. But the
project - first suggested two years ago - will not get off the
ground before late 2002 as researchers draw up elaborate
protocols over how to collect and collate the data.

Central to the debate are concerns over confidentiality and
the issue of what access pharmaceutical companies should
have to the information.

The UK Population Biomedical Collection will cost up to $84
million) to establish and contain DNA samples, lifestyle details
and medical records from volunteers of both sexes aged from
45 to 64.

"We want to find out how genes on the one hand, and lifestyle
and environmental factors on the other, interact with one another,"
said Professor Tom Meade, director of the Medical Research
Council's Epidemiology and Medical Care Unit in London who
chairs the working group.

Last year's mapping of the human genome opens the door to
understanding the root causes of many diseases but the
interaction between genes and environmental influences
is hugely complex.

As a result, large-scale studies are needed to tease out
statistical significance in the many variables which increase
or decrease our chance of succumbing to a particular disease.

The project will look at a range of diseases, including cancer,
heart disease, Alzheimer's, Parkinson's, diabetes and asthma.
Meade believes it could yield its first fruits in around five years.

He expects the initial progress to be in a field known as
pharmacogenomics, or understanding why people react
differently to the same medicines.

More fundamental breakthroughs will take longer. "The
main results in determining the important interactions
between genes and lifestyle will probably take more than
10 years," Meade said.

The project - backed by Britain's Medical Research Council,
the Department of Health and The Wellcome Trust, the
world's biggest medical charity - is not the first genetic
database. But it will be the largest and the most ethnically
diverse, containing twice the number of DNA samples as
one in Iceland, where a commercial biotech firm, deCODE
Genetics, has struck a controversial deal to gain exclusive
access to 270,000 medical records.

Waves of immigration from the Celts and Saxons through
to Africans and Indians make Britain an ideal "laboratory"
for studying genetic influences in a population group that
is largely typical of the wider world.

Five decades of National Health Service records also mean
there are well-documented medical histories to marry against
the genetic and lifestyle data.

Other gene databases, by contrast, have focused on isolated
populations such as Estonia, Newfoundland and Tonga,
as well as Iceland. They make comparisons easier but some
experts worry such isolated groups may not be representative.

Confidentiality is a priority for Meade and his colleagues,
and an independent monitoring body will be established
to police access to data and DNA samples. Insurance
companies and the police will not have access, safeguarding
participants from the risk that information could be used
against them. But the flip-side of that privacy is that there
will be no feedback of results to individual members of
the study population and hence no personal gain in terms
of advance warnings of health problems.-Reuters

SOURCE: REUTERS
http://www.dawn.com/2001/text/int15.htm

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