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Monday, 14 January, 2002, 00:04 GMT
Gene bank safeguards call
Interpreting genetic information could lead to clinical breakthroughs
Genetic information could lead to clinical breakthroughs
Volunteers donating blood samples to a proposed "genetic databank" must be protected by legislation, a campaign group has warned.

Under the plans, Biobank UK would collect blood samples in order to carry out investigations to see which genes are linked to certain diseases.

New medicines and tests for genetic conditions could result.

Even though the databank is still in the planning stages, campaign group GeneWatch UK say legislation should be brought in well in advance of doctors beginning to recruit patients for the project.


There are clear dangers as well as potential benefits from this type of research

Dr Helen Watson, GeneWatch UK
They warn without legal safeguards, information could fall into the hands of private companies, who may misuse it by patenting genetic information for their own use.

GeneWatch UK also warns genetic tests determining who might be susceptible to certain diseases may also be developed, which might be used to discriminate against people thought susceptible to certain conditions.

The first samples are likely to be taken from men and women aged between 45 and 60.

No start date for collection has been set, and it would be years before research could lead to medicines.

Public protection

The genetic information will be collected by Biobank UK, a collaboration between the Wellcome Trust, the Medical Research Council and the Department of Health.

GeneWatch says �60m is being invested into the project.

The Wellcome Trust said the current proposal is for a centrally co-ordinated network of regional centres, which would recruit volunteers to the project.

A separate body, independent of the scientists and those directly involved in recruiting volunteers, would also be set up.

It would be responsible for ensuring the samples and data collected are used responsibly and within the terms of consent obtained from volunteers.

It said information and samples will be held in public ownership for public benefit.

It added there would not be exclusive access to it by any one organisation or company.

Dr. Alan Doyle, Biomedical Resources Programme Manager at the Trust stressed: "People's genetic information will be subject to the strictest confidentiality and there is no likelihood of identification of an individual or of his or her genetic information being used in any way without prior consent.

"Allegations to the contrary are quite without foundation and cause a great deal of unnecessary confusion and groundless worry."

'Clear dangers'

But Dr Helen Wallace, deputy director of GeneWatch UK, warned: "Doctors must not be duped into selling a half-baked plan to patients.

"There are clear dangers as well as potential benefits from this type of research.

"The government must first ensure that people's genetic information cannot be abused."

She said that, without proper safeguards, the group would have concerns about:

  • Genetic testing leading to an "underclass" of people excluded from jobs or from insurance for having the "wrong genes"
  • Companies "privatising" people's genes by patenting them - limiting medical research by others and keeping the prices for new treatments unreasonably high
  • People's genetic information being used for research they disagree with - for example on behaviour, sexuality or intelligence
  • Access to genetic test results in the new database by the police or by the government
  • Major scientific errors and mistakes

Dr Watson added: "Genetic testing means that people with the 'wrong genes' could be refused insurance or employment in the future.

"A legal ban on genetic discrimination must be in place before research begins."

GeneWatch said it recently emerged an American tobacco company was set to profit from lung cancer genes, after medical research involving lung cancer patients.

It said under current patent laws, UK patients would not know if a tobacco company was sold the rights to use their genes.

"A spokesman for the British Medical Association said: "If patients do give samples for gene collection they must be given all necessary information so that they are in a position to give informed consent."

See also:

23 Oct 01 | Business
'Moratorium' on genetic data use
03 Apr 01 | Health
Genetic test 'moratorium' call
07 Feb 01 | UK Politics
Insurers against genetic test ban
07 Feb 01 | Health
Genetic tests 'ripe for abuse'
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