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Last Updated:  Wednesday, 9 April, 2003, 16:53 GMT 17:53 UK
Call for gene test restrictions
Genetic tests
Genetic tests can check for conditions
Genetic tests should not be sold directly to the public, an expert body has said.

The Human Genetics Commission (HGC), which advises the UK government, has recommended the tests should only be carried out under the supervision of a doctor.

It has stopped short of recommending an outright ban, saying people have a right to obtain information about their health.

But the HGC said testing carried out without a medical expert to explain the results, and consider factors such as family history, could provide false reassurance or cause unnecessary alarm.

The Human Genetic Commission's proposals are weak and ineffective
Dr Helen Wallace, GeneWatch UK
Some genetic testing kits claim to predict a person's chance of developing conditions such as heart disease and obesity.

Others give nutritional advice based on an individual's genetic profile.

Controls

The HGC says the manufacture and use of home tests should be "discouraged".

It added that stricter controls were needed to ensure companies marketed high quality tests with plenty of back-up for customers.

Consumers should also be able to obtain impartial advice on using the tests, it said.

The HGC also called on the NHS to set up a "genetics service" which can supervise the availability of tests for patients.

The government is now being asked to decide which body should regulate and monitor genetic testing.

Powers

Baroness Helena Kennedy QC, chairwoman of the HGC, said: "We do not see a need for an outright ban as people have the right to information about themselves.

"But we do want people to be properly protected.

"We believe the majority of genetic tests should be carried out under the supervision of a doctor within the NHS and that people need to think twice before paying money for something they may not need or understand.

"Modern genetics should not be misused commercially.

"Public information is vital and one good way to help people decide which genetic tests are suitable for them is to arm them with the facts."

Philip Webb, chair of the HGC group which carried out the review, said: "We are concerned that these tests could give misleading health information that overstates the role of genetics in the onset of diseases.

"Predictive genetic tests performed without a medical consultation may provide false reassurance or cause unnecessary alarm to people."

But GeneWatch UK said the new proposals were "a triumph of spin over substance".

Dr Helen Wallace, Deputy Director of GeneWatch UK said: "The Human Genetic Commission's proposals are weak and ineffective. They simply hope that most genetic tests are sold through doctors and independently assessed - but they recommend no real controls to make this happen."

She added: "Claiming to tailor products or advice to your genetic make-up is the latest marketing scam.

"At best, these tests are an expensive con and tell you nothing meaningful about your health.

"They can also be misleading or be a ploy to sell you medicines or supplements you do not need."

The UK charity Breakthrough Breast Cancer welcomed the report.

"The HGC's recommendations to put stricter regulations in place echo the concerns of women with a family history of breast cancer who tell us it's vital genetic tests are overseen by specialists and results professionally interpreted," said Dr Michelle Barclay.

"We hope these recommendations help ensure individuals fully understand the implications of a test result for themselves and their families."

Around 5% of all breast cancers are thought to be due to strong hereditary factors. Currently genetic testing is only suitable for a relative few.


SEE ALSO:
Bringing the genetic lab to you
13 Sep 02  |  Leicester 2002
Experts urge genetic test controls
10 Sep 02  |  Leicester 2002
Public quizzed on gene test kits
15 Jul 02  |  Health
Concern over genetic test revolution
24 Oct 02  |  Science/Nature
Your genetic code on a disc
23 Sep 02  |  Science/Nature


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