- The genetic secrets of millions of Britons could be sold
off to private drug companies under highly controversial proposals outlined
in leaked government documents.
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- DNA samples collected from patients during routine
hospital
treatment would be stored on a massive national database and auctioned
to pharmaceutical companies, who could use the information to help develop
lucrative new drugs.
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- The idea has outraged campaigners who fear that such
highly intimate information - DNA could reveal inherited health risks and
personality traits - could potentially be leaked to the police, employers
or insurance companies. Opponents say it would be a step to 'privatising'
the nation's DNA.
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- Health Secretary Alan Milburn, who has made clear his
concerns about potential developments in genetics, formed a panel of
medical
and industry experts in April to advise on his forthcoming genetics Green
Paper.
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- But confidential minutes of its top-level meetings,
passed
to The Observer , reveal the pressure being exerted by biotech companies.
Crispin Kirman, chief executive of the Bioindustry Association representing
drug companies, warns that, unless the industry is allowed to use NHS data,
Britain will become 'a third world genetics country'.
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- Such warnings will be taken seriously by Downing Street,
which wants to see Britain taking a lead in the new science. Over the next
decade dozens of genetic tests are likely to be developed which identify
predisposition to serious illness.
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- A number of the confidential papers examine the role
of the private sector, with Kirkman noting that 'the UK population
represents
a very high potential source for genetic research'.
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- He praises Iceland's controversial sale of the genetic
database of the country's entire population to a private company, and
floats
the idea of genetically screening the whole British population at birth
and then again at 18.
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- However, another adviser, bio-ethicist Baroness O'Neill,
warns that proposals for a genetic 'smart card', like a credit card with
an individual's genetic details imprinted on it, would cause public
concern.
Although the cards could be used by doctors to tailor drugs to patients,
the concern is the information could easily be stolen.
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- Other participants want to contract out genetic testing
to the private sector, and allow biotech companies to offer genetic tests
over the internet, raising fears that there will be no proper counselling
for those receiving bad news.
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- The possibility is also raised that people could test
samples from third parties and use the results for blackmail.
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- The minutes suggest that the section of the Green Paper
dealing with industry should be placed at the back of the document 'to
avoid giving the impression that commercial considerations are at the
forefront'.
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- Dr David King, co-ordinator of Human Genetics Alert,
criticised the proposals. 'It appears that the Government is on the road
to privatising the nation's DNA,' he said. 'Many of the ideas being floated
are driven by commercial interests and profits with ethics given a walk-on
part.'
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- Baroness Kennedy, chair of the Human Genetics Commission
- some of whose members are furious at being left off the panel - said
she would have grave concerns about selling off DNA.
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- 'This raises some very, very serious questions, and my
commission will really want to look at that,' she said. 'It is the leaching
of informa tion from one databank to another that is precisely what the
general public is afraid of.'
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- The Commission will tomorrow discuss in public its own
draft report on the use of genetic information. It is expected to recommend
an independent watchdog to oversee the police DNA database of samples taken
from criminals, and tighter rules on consent to medical genetic tests,
making it clear how and by whom results will be used.
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- It will also back more rights for people found to be
predisposed to illness, possibly by extending current discrimination
law.
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- Campaigners fear police and the medical establishment
will face pressure to share database information, or that police could
use DNA collected for forensic purposes to research genetic pre disposition
to violence and other character traits.
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- The latest proposals go well beyond last year's move
by the Wellcome Trust and Medical Research Council to set up a gene
databank
of 500,000 individuals.
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- Members of the panel declined to comment. A spokeswoman
for the Department of Health said the meeting was a brainstorming session
and no decisions had been made.
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- 'The Green Paper will consider the social, ethical,
scientific
and economic issues of genetics,' she said. 'A wide-ranging discussion
is underway for possible topics of inclusion in the Green Paper. Clearly
we are a long way away from making decisions on what the paper will
contain.
The panel will be advising Ministers in due course.'
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