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Last Updated: Tuesday, 24 June, 2003, 12:19 GMT 13:19 UK
Millions for genetic technology
Genetic tests
Genetic tests can check for conditions
A major expansion of the use of genetic technology to tackle medical problems has been announced by Health Secretary John Reid.

He also said legislation would be introduced to make it an offence to test a person's DNA without their consent, except in very limited circumstances.

However, critics are concerned that the UK Government has not done enough to ensure that genetic information cannot be used to discriminate against vulnerable people.

Dr Reid told the House of Commons that over the next three years 50m would be pumped into genetic science in England.

Of this, 18m would be spent on upgrading NHS genetics laboratories, and over 7m on developing services in primary care and hospitals.

Funding will be made available for more than 50 new genetics counsellors, and up to 90 lab technicians.

A genetics education and training centre will be established to ensure all NHS healthcare staff receive appropriate training.

Other funding will include:

  • 4m on research into new gene-based treatments
  • 2.5m will be spent on research into a cure for the genetic disorder cystic fibrosis
  • 3m for research into other single gene disorders
  • 4m for gene therapy production facilities

I believe that genetics can deliver real and lasting benefits in health care for everyone in this country
Dr John Reid

Dr Reid said the Human Genetics Commission (HGC) would be asked to consider the idea of screening babies at birth and storing their genetic profile for future use.

The HGC will also review the need for controls on genetic tests being made freely available to the public.

Dr Reid also promised to address concerns that some people would be discriminated against on the basis of genetic tests showing them to be at risk of developing disease - but did not promise concrete measures to tackle this problem.

Healthcare revolution

Dr Reid said: "We are standing on the threshold of a revolution in healthcare.

It's not good enough to introduce new and exciting technologies into the NHS without taking care of people who might learn distressing news about themselves.
Joanne Rule

"I believe that genetics can deliver real and lasting benefits in health care for everyone in this country.

"Increasing understanding of genetics will bring more accurate diagnosis, more personalised prediction of risk, new gene-based drugs and therapies and better targeted prevention and treatment."

Dr Reid added that, in time, genetic science should also lead to better ways to tackle the country's biggest killers: heart disease and cancer.

"Our vision is for the NHS to lead the world in taking maximum advantage of the safe, effective and ethical application of the new genetic knowledge and technologies for all patients as soon as they become available."

Shadow Health Secretary Dr Liam Fox welcomed the White Paper, in particular increased funding for cystic fibrosis and the proposals on DNA theft.

But he added: "We mustn't overhype what genetics can do.

"The technologies are at a very early stage, and the full potential is not known."

Concern

Genetic disorders, such as cystic fibrosis, muscular dystrophy and haemophilia, are caused by mutant variations of normal genes which are unable to perform their proper function.

Gene therapy works by implanting healthy copies of these genes, often attached to a harmless virus, into the patient's own cells.

Dr Helen Wallace, of the pressure group GeneWatch UK, said the government had put the interests of commercial companies ahead of the interests and needs of the public.

"It has failed to say it will draft legislation to prevent employers and insurers from accessing genetic test results.

"And it has signalled that everyone will be tested for genetic diseases, without conclusive evidence that is useful."

The charity Cancer Bacup voiced concern that Dr Reid had fuelled unrealistic public expectations about the potential benefits of gene technology.

Chief executive Joanne Rule also warned that too few counsellors were being made available to provide expert help and support.

She said: "It's not good enough to introduce new and exciting technologies into the NHS without taking care of people who might learn distressing news about themselves or their loved ones."

However, Baroness Helena Kennedy QC, chair of the Human Genetics Commission, said: "The White Paper clearly signals a major investment in genetics within the NHS, and that the government has recognised the HGC's concerns that this investment might be squandered if people are worried about what use might be made of their sensitive genetic information."

Dr Mark Walport, director of the Wellcome Trust, which funded the UK's contribution to the Human Genome Project, said: "We are delighted that the government is making such a large financial commitment to translating human genome information into real health care benefits."

Legal problem

Dr Graeme Laurie, a law specialist at the University of Edinburgh, warned that it could be difficult to define what information should be covered by new legislation outlawing genetic testing without consent.

"Many forms of information that we have not traditionally considered to be genetic nonetheless have a genetic component.

"Our family histories and the colour of our hair and eyes are forms of genetic information.

"A very real practical and legal problem then will be how to define which forms of genetic data will be protected by this new law and how to defend other forms that are not protected."




WATCH AND LISTEN
Parent of a cystic fibrosis child Joanne Hilditch
"It [gene therapy] is the only hope you really have"


Father of gene therapy participant, Paul Gelsigner
"Everything has to be in the open and ethically reviewed"



SEE ALSO:
Q&A: Gene therapy
24 Jun 03  |  Health
Gene testing: The pros and cons
24 Jun 03  |  Health
Clinging to hope for baby Ella
24 Jun 03  |  Politics


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