NHS urged to plan for new genetic tests

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The Independent Online
LACK OF funds to pay for genetic testing on the NHS will create a thriving market for private companies to exploit anxious patients, according to a report published today by a social policy think-tank.

The Institute for Public Policy Research claimed that the NHS was "sleepwalking into a genetic future" because of its lack of planning over new tests that will soon become widely available.

"Unless the NHS acts swiftly it could be usurped by private companies providing 'inappropriate' genetic tests to anxious patients via post and the Internet. This is already apparent in the US," the institute said.

"Driven by profit, private companies have no obligation to provide essential counselling and after-care treatment ... The NHS is well placed to provide genetic testing and counselling, but has so far lacked a coherent strategy for doing so."

Doctors already use a number of genetic tests for a limited range of inherited disorders, such as cystic fibrosis, Huntington's disease and certain cancers that run in families.

However, new developments in human genetics are also likely to produce tests that can predict a person's predisposition to diabetes, heart disease, arthritis and Alzheimer's disease.

Jo Lenaghan, the author of the report, Brave New NHS, said the NHS almost exclusively carried out all the genetic testing in Britain, with the family doctor acting as the "gatekeeper'' to the service.

"Yet what if this gateway to genetic services is kept shut, and the NHS is unable or unwilling to meet predicted demand?" she said. The failure could provide the opportunity for the private sector to exploit the demand without bearing any of the NHS obligations to provide essential counselling and after-care treatment, the report said.

A commercial market in genetic tests could inflate inappropriate demand, fuel public anxiety, leave the NHS to pick up the pieces, and fail to respect confidentiality, said the institute.

A separate report by the Wellcome Trust,the largest research charity in Britain, found that some families affected by genetic disorders have already felt unfairly discriminated against by the insurance industry. A survey of 7,000 family members found that a third of those sampled experienced difficulty obtaining life insurance, yet 13 per cent of these cases posed no higher-than- average risk.

Tom Wilkie, head of bioethics at the trust, said this was the first study to investigate British genetic discrimination in relation to insurance. "It demonstrates that the public do perceive an element of discrimination against them because of their genetic status. Yet the inconsistency of insurance companies indicates error when interpreting genetic test results, not a corporate policy of discrimination," Mr Wilkie said.

The trust and the instituteboth agreed that the social and ethical problems raised by genetic testing will become more acute over the next decade when new tests are developed to assess illnesses influenced by more than one gene.