Call for laws to monitor genetic testing

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The Independent Online
Parliament should pass laws to ban abuses of genetic tests and to guarantee confidentiality, one of the country's leading geneticists said yesterday, writes Tom Wilkie.

Professor Kay Davies, of Oxford University, said that, if handled properly, the techniques of genetic analysis could help thousands of families afflicted by inherited disease.

But she warned that there is no regulatory body to ensure that tests are done properly and that information about their genetic predisposition to disease is given to people properly. People were also worried that insurance companies might discriminate against them on the basis of what is in their genes.

Professor Davies cited the example of a commercial company, University Diagnostics in Britain, which is already offering postal tests for cystic fibrosis - the commonest inherited disease in Britain. The test will show up whether someone is a healthy "carrier" and at risk of having children who suffer from the disease, if the other parent is a carrier too.

"It is now possible to diagnose most common single gene defects, such as muscular dystrophy and cystic fibrosis, and also to screen for susceptibility to certain cancers, such as colon cancer and a small proportion of breast cancer. As we move into the next century, it will become possible to predict an individual's risk of having a predisposition to more common disorders resulting from genetic-environmental interactions such as diabetes, ischaemic heart disease asthma and rheumatoid arthritis...."

But she said that if genetic testing became available over-the-counter it might cause more suffering than good by generating widespread anxiety about genetic predispositions that nothing can be done about.

She pointed out that the NHS was conducting pilot studies to see how best to organise the service to ensure that everyone who had a genetic test was properly counselled and, as far as possible, understood the significance of the results.

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