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8-Humans: New UK Minister of Health works on gene therapy rules

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TITLE:  Gene therapy to get go-ahead from Reid
SOURCE: The Observer, UK, by Gaby Hinsliff,6903,982551,00.html
DATE:   June 22, 2003

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Gene therapy to get go-ahead from Reid
White Paper will propose safeguards to protect emerging 'genetic underclass'

A genetic revolution that could transform the face of medical care in
Britain will be unveiled this week, amid new safeguards for an emerging 'genetic
underclass', whose DNA marks them out as likely to fall sick.

Ministers are expected to approve an expansion of research into gene therapy
- techniques to tackle inherited disease by 'correcting' faulty genes within
the patient's own cells - and more genetic testing on the NHS as new ways of
screening for future disease become available.

The therapy offers hope to sufferers of conditions from cystic fibrosis to
Down's syndrome and Alzheimer's. It works by splicing healthy copies of
mutated genes known to cause certain disorders to a harmless virus, which is then
deliberately introduced into the body cells of the patient, knocking out the
mutated gene and replacing it with the 'correct' one.

Such advances are controversial among religious and other groups, afraid
that meddling with nature will have unintended and dangerous consequences.

John Reid, the new Health Secretary, will also pledge new safeguards on the
use of individuals' DNA - the genetic code unique to every individual - by
the insurance industry, employers, doctors and others as genetic screening
becomes more widespread. A White Paper this week will urge debate over the use of
the technology to settle fears such as those dogging GM foods or the
controversy over 'designer babies'.

Reid argues the NHS will become increasingly relevant as a safety net for
those whose genetic inheritance - regardless of class, wealth or any other
opportunity in life - makes them likely to need intensive and expensive medical
treatment in future.

'As health becomes more predictable through genetic advances, the case for
the NHS becomes stronger not weaker,' Reid will say. 'This debate provides a
twenty-first century argument for traditional Labour values of collective
healthcare provision.'

Genetic watchdogs warn that once genetic testing for inherited disease
becomes widespread, insurers will try to refuse cover to those likely to become
ill. 'Undesirables' could find themselves refused mortgages, or rejected by
employers worried they will need time off sick.

Insurers have agreed a ban on the use of genetic tests - except for the
highest levels of cover - until 2006, and the White Paper is expected to argue
this resolves the issue for this Parliament. It is expected to say the
situation will be reviewed when the ban expires.

Ministers will make the theft of DNA an offence, to combat fears that a
saliva trace swiped from a person's discarded cigarette butt or an empty wine
glass could be tested by the unscrupulous to determine their medical his tory,
parentage or even personality traits.

The new offence would protect celebrities from blackmail or tabloid
muckraking, but also children involved in paternity cases, whose fathers could
otherwise take samples from them without their mothers knowing.

Ministers are thought to favour allowing genetic tests to be used by
employers in very limited circumstances, such as screening airline pilots for
vulnerability to sudden heart attacks.

New restrictions are likely on the sale of over-the-counter testing kits for
inherited conditions, amid fears that people could be given shattering news
without professional counselling.

The National Cystic Fibrosis Trust, now funding trials of gene therapy for
the incurable and fatal lung disease affecting up to 7,500 Britons, says it
needs £6 million in government funding to achieve a breakthrough. Rosie Barnes,
the trust's chief executive, said gene therapy could make 'all the
difference in the world' to child sufferers whose symptoms can now be controlled only
by drugs and physiotherapy.

The Labour Party's policy commission on health, which met last Wednesday to
discuss ideas for the next manifesto, warns in a policy paper that the NHS
must guard against the emergence of a 'genetic superclass' of those whose DNA
suggests they are unlikely to suffer chronic illness, and a less fortunate
'genetic underclass'.

Genetic testing is now limited to rare, 'single gene' disorders such as the
fatal Huntingdon's disease, telling patients definitively whether or not they
will get it.

But as scientists unravel which genes are responsible for what, the boom
area in commercial testing will be for more common illnesses such as cancer or
heart disease, where more complex factors are at work and patients will be
able to learn only whether they have a greater or lesser risk than normal. These
could be used by GPs to encourage high-risk patients to exercise or stop

The White Paper was prepared by former Health Secretary Alan Milburn before
he recently resigned, but will be delivered by Reid in his first major outing
in the post. Tony Blair is anxious for the British biotechnology industry to
become a world leader in research and development.

The Human Genetics Commission, advising the Government on the new science,
has called for Ministers to consider introducing a new protection against
'genetic discrimination', as individuals are protected on grounds of race and


 Hartmut Meyer       
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