[Nettime-bold] FW: Fury at plan to sell off DNA secrets

["Saul Albert" <saul.albert@virgin.net>]

Fury at plan to sell off DNA secrets

Leak reveals drug companies' demands | Britain's health files 'could be
privatised'

Antony Barnett and Gaby Hinsliff
Sunday September 23, 2001
The Observer <http://www.observer.co.uk/>

The genetic secrets of millions of Britons could be sold off to private drug
companies under highly controversial proposals outlined in leaked government
documents.

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.

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.

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.

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'.

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.

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'.

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.

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.

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.

The possibility is also raised that people could test samples from third
parties and use the results for blackmail.

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'.

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.'

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.

'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.'

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.

It will also back more rights for people found to be predisposed to illness,
possibly by extending current discrimination law.

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.

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.

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.

'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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