Britain spared on genetic discrimination

Sam Dunn sees why insurers won't yet be allowed to set their premiums according to tests that predict a risk of serious illness
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The Independent Online

The spectre of a dystopian future hangs over any debate on genetic testing. In this scenario, an insurance underclass would be created, made up of people who were either denied life cover or charged huge sums for it as tests showed a predisposition to disease in their family. In contrast, their genetically healthier neighbours would get cheap cover because there was apparently less risk of them falling ill.

The spectre of a dystopian future hangs over any debate on genetic testing. In this scenario, an insurance underclass would be created, made up of people who were either denied life cover or charged huge sums for it as tests showed a predisposition to disease in their family. In contrast, their genetically healthier neighbours would get cheap cover because there was apparently less risk of them falling ill.

Add to this the commercial logic that drives today's insurers to calculate risk more accurately, and fears of a harsh future for those with a genetic disposition to serious illness can appear well-founded.

So it was with some relief that many, including the Human Genetics Commission, greeted last week's extension of a moratorium on insurers being able to use "predictive" genetic testing for illnesses when setting premiums for life and critical illness cover and income protection.

The moratorium was due to run out next year, but a reprieve until 2010 has now been granted by the Health Secretary, John Reid. So, for the next five years, anyone whose family medical history shows signs of a hereditary disease such as breast cancer can take a predictive genetic test without fear of having to divulge the results to an insurer.

The fear that millions of people could prove test-positive and then be unable to buy life cover - to secure a mortgage, for example - lies behind the Government's decision.

Nearly a third of women with a history of breast cancer in their family would refuse tests if they knew insurers might use a positive result against them, according to research from the Breakthrough for Breast Cancer charity. "The moratorium is to allay public fears over how insurers might use this new sort of science," says Tony Jupp, chief underwriter at insurer Norwich Union.

It is hoped that more people will now come forward and volunteer for predictive genetic testing for diseases such as breast cancer, myotonic dystrophy and motor neuropathy.

While some people may not ever want to know, those concerned enough to take a test could then use a positive result to seek medicine or drugs, says Mr Jupp. "The point [of the moratorium] is that people can come forward and not have to worry about finding insurance as well."

At the moment, insurers are allowed to take predictive genetic test results into account for just one disease: the rare Huntington's brain disorder.

But even here, there's a condition attached: the insurer can only ask about the test if the individual is seeking life cover worth more than £500,000.

As it stands now, the Huntington's test can be taken, a positive result found and £400,000 worth of life insurance then bought - without the individual having to declare it.

This high exemption - which will apply for the foreseeable future to genetic tests for any disease, not just Huntington's - is to encourage people to take the test without fear of punitive insurance costs, while giving insurers themselves a boundary for premium calculations.

The Huntington's test is the only one approved by the Genetics and Insurance Committee (GAIC), set up to monitor requests made by the Association of British Insurers.

Yet applications for other tests are on their way, including those for the BRCA1 and BRCA2 genes that can lead to breast and ovarian cancer, says Richard Walsh, head of health insurance at the ABI. It is estimated that around one in 1,000 women in the UK carry the BRCA1 gene.

There are also applications in the pipeline to extend the Huntington's test from its current exclusive application in life cover to critical illness and income protection - although again they would only apply to large policies: £300,000 in the former case and a £30,000 annual payout in the latter.

Fears that a rare strain of the degenerative brain disease Alzheimer's will also be the subject of an application have not been borne out since the number of people affected is too small to warrant it.

Stringent criteria must be met for a successful ABI application for predictive disease tests. The clinical tests must be proved to be accurate, and it must also be demonstrated that there would be huge financial implications if insurers didn't know about the disease.

When the ABI can prove that these criteria have been met, the disease can be approved for testing and insurers allowed to use the results for calculating premiums.

While such a prospect alarms some people, many in the insurance industry stress that predictive genetic testing is just the latest scientific tool to help pinpoint risk.

"For the vast majority of people, it is not a problem," says Mr Jupp. "Right now, we are simply trying to lessen the problem for the small number of people who unfortunately do have a genetic disposition towards an illness or disease."

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