Genetic tests arrive in the post

Companies offer genetic testing by post, to let prospective parents know the risk of having a child with cystic fibrosis. More tests are coming - for breast cancer, diabetes, perhaps even Alzheimer's, but the Government can't, or won't, legislate. Charles Arthur, Science Editor, asks why.
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Companies which offer genetic testing to the public will not be subject to legislation, a government-appointed committee said yesterday.

But the members admitted that no law covers such companies, and that framing one would be extremely difficult.

At least two companies in the UK, University Diagnostics (UDL) of London and Leeds Antenatal Screening Service (LASS), already offer "postal" testing for the inherited genetic disease of cystic fibrosis. For between pounds 65 and pounds 98, they will examine a sample of saliva and determine whether it comes from someone who carries a mutation of the gene that causes the disease. If two parents have a mutated CF gene, there is a 25 per cent chance that their child will have the illness.

Tests for CF are just the beginning. Soon, companies will be able to test for a range of "late-onset" diseases, where having particular genes means the patient may become ill with breast cancer, diabetes, Alzheimer's, asthma and many other conditions which at present are only tenuously linked to genetic causes.

The Advisory Committee on Genetic Testing (ACGT), chaired by Professor Marcus Pembrey, yesterday published a code of practice and guidance for companies which supply human tests. It decided that tests should not be offered to people under 16, and that counselling about the meaning of a positive test should be available at no extra charge.

Professor Pembrey said that the latter was necessary because "the technique [of testing] may be simple, but interpretation is difficult".

The ACGT's decision to shy away from legislation stemmed partly from the lack of any law which could be used against companies offering testing. "In the end, it's just a service," said a Department of Health spokesman.