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Monday, December 14, 1998 Published at 01:19 GMT


Genetic test boom warning

The number of genetic tests being offered is expected to soar

The NHS is in danger of sleepwalking into a genetic future which private companies may be all to ready to exploit, according to new research.

The BBC's James Westhead: Genetic tests are now available through the internet
The Institute of Public Policy Research (IPPR) says the NHS must grasp the implications of genetic testing for diseases before it is too late.

The US experience shows that commercial companies are only too keen to offer tests, often without proper counselling, it says.

The IPPR launches its Brave New NHS report on Monday, in which it calls for training of health staff in genetic testing and new laws to regulate the commercial provision of genetic tests.

Explosion of testing

Currently, there are only a few tests available for rare genetic diseases.

Dr Vivienne Nathanson: "They are more than the sum total of our genes"
But in the next few years the number is likely to shoot up, with people able to obtain tests which can show their susceptibility to a range of diseases, including different types of cancer.

The IPPR says most doctors are unprepared for the complexity of many of these tests.

Report author Jo Lenaghan says private firms in the US are already offering genetic tests for breast cancer at around $2,500 a go.

It has been shown that 5% of all breast cancers are due to a defective gene.

Ms Lenaghan said there are no regulations to stop this happening in the UK. Private firms do not need to be licensed to provide genetic tests.

She says the danger is that they could exploit people's fear of disease unnecessarily and they may not offer unbiased counselling or pre-test counselling.

"There may be a strong commercial interest in not advising against a test," she said.

Complex results

Post-test counselling allows patients to understand the often complex outcome of positive genetic tests.

Many of the future tests will only show susceptibility to disease. That is, the person may not become ill.

Ms Lenaghan says this needs to be clearly explained to avoid a panic reaction.

[ image: Genetic tests will be able to predict susceptibility to diseases like cancer]
Genetic tests will be able to predict susceptibility to diseases like cancer
She wants to see regulatory powers being brought in to govern private firms as well as the introduction of NHS kitemarks to allow GPs to purchase the highest quality services.

The IPPR report calls for more training of NHS staff so they know how to counsel patients and refer them for testing, if necessary.

This includes the development of genetic nurse specialists since nurses are likely to end up doing pre-test counselling for patients.

It says trainee doctors should receive more training in this than they do now.

It also calls for a coherent government strategy on genetic testing with an emphasis on public education. This will mean patients can negotiate better with their doctors about tests and be more involved in the debate on ethical issues such as whether all tests should be available on the NHS.

There are currently four government bodies for studying genetics.

The IPPR also backs the government's moratorium on using genetic tests in the insurance industry.

It says these should only be used for single gene disorders where there is certainty that the person will develop a disabling or life-threatening condition.

External factors

Dr Vivienne Nathanson, head of health policy at the British Medical Association, said: "The difficulty with all of this is that there are a lot of uncertainties.

"What is difficult at the moment is that no one yet knows if any of this genetic knowledge is going to be useful in the long term."

She said it was important to establish the relationship of external factors, such as diet and work, with health.

And she said education of children would be necessary for future generations to understand what genes are and how they work.

She added: "Also so that they will recognise that they are not the sum total of their genes."

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