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Saturday, 26 February, 2000, 03:13 GMT
Firm rules for pre-natal tests

Pre-natal genetic testing is patchy in the UK

Testing for genetic defects in unborn babies should be available to all, say experts.

Babies born with some conditions, such as Down's syndrome or cystic fibrosis, have a slightly different genetic structure, and it is possible to test for this.

The current unregulated arrangements mean that many women are not even offered such tests.

A draft version of the first ever set of strict guidelines call not only for existing tests to be made available to all, but for women to be given much more information and counselling before testing takes place.

Tests are possible for several conditions
However, these changes could require substantial investment in scores of hospitals to upgrade laboratories and employ more staff.

Research by the Confidential Enquiry into Prenatal Genetic Testing found that many women who had given birth to a first child with a genetic defect were not being offered testing on becoming pregnant again.

The new consultation document, produced by the Advisory Committee on Genetic Testing, insists that genetic testing should be available to all those with a family history of such conditions.

The committee wants such testing to be organised on a national basis, rather than left to the individual hospital or health authority.

Dr Hilary Thomas, a Manchester GP who helped produce the consultation document, said that such testing was currently a lottery.

She said: "There are no standards, and there is really amazing inequity of access to services.

"In one hospital I know, three different consultants all offer different pre-natal tests at different times during the pregnancy."

She added: "People simply aren't getting the right information."

Full information

The committee also recommends that doctors should be certain that a women undergoing a test fully understands its consequences before giving consent.

In addition, women who do not wish to have the tests should not be placed under undue pressure by medical staff to do so, it says.

Tests for Down's syndrome, cystic fibrosis, a blood condition called thallassemia, and another condition called neural tube defect are well-established.

It is also possible to screen embryos before they are implanted during fertility treatment.

However, there are concerns that there may be a demand to test for other genetic clues, such as genes which appear to predispose towards certain cancers later in life.

And other doctors are concerned that some genetic tests are not sufficiently accurate - leading women to opt to terminate babies who do not have the defect.

The responses to the consultation will be considered by the newly-created Human Genetics Commission later this year.

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See also:
16 Nov 99 |  Health
Gene screening debate goes public
05 Nov 99 |  Health
Babies 'undergo gene therapy tests'
01 Dec 99 |  Health
Autism gene link
12 Nov 99 |  Health
Gene clue to learning disability
08 Jan 99 |  Health
Cancer gene breakthrough

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