Think before you test

A prick of the needle, a little blood is taken. Nothing to worry about, the consultant says, you just have a predisposition to a potential medical condition. It's in the genes. Very little chance of it actually happening, and it should pose no problem - until you try to obtain insurance and find yourself being refused cover time and time again.

Genetic testing offers the potential for some of the greatest medical advances of the new millennium. It raises the possibility of diagnosing the likelihood of a growing range of conditions, including breast cancer, Alzheimer's disease or Huntington's chorea.

In some situations, the condition can be tested for regularly and treated if it becomes a threat. In other cases, testing offers the potential of prevention long before the condition might ever be passed on to one's offspring.

But until the treatments available can guarantee prevention, if the tests involved reveal an increased risk of conditions such as those described, someone applying for insurance may have to pay higher premiums. He or she may even be denied cover altogether, as insurers screen out potential risks to whom they might be forced to pay vast sums of money should they fall ill.

Some insurers already ask people applying for life or health insurance whether they have had any genetic tests and, if so, what the results were. This has raised fears that people who believe they may be at risk of one of the seven major conditions where insurers use genetic testing will avoid taking a test. Doing so could put their own health or that of their children at risk.

The seven conditions where insurers can use the results of genetic testing in setting premiums are: Alzheimer's disease; some forms of breast or ovarian cancer; Huntington's chorea; familial adenomatous polyposis; myotonic dystrophy; endocrine neoplasia; and hereditary motor and sensory neuropathy.

The Association of British Insurers issued a new code of practice on genetic testing on 6 August. This pledges that insurers will review any cases where genetic-test results were used if the test in question should ever be deemed unreliable by the Government's new Genetics and Insurance Committee (GAIC), a body set up to oversee the validity and fairness of tests.

However, medical charities have given a cold welcome to these supposed improvements in insurers' practice. Harry Cayton, the chief executive of the Alzheimer's Disease Society, puts little faith in this concession. He says: "We don't think they should be using genetic tests at all. They should wait until these tests are evaluated by GAIC. I have no confidence in the insurance industry on this issue whatsoever.

"Ten years ago, none of this was an issue. The industry was insuring people anyway, and carrying whatever small risk there might have been. I don't think the industry has valid economic arguments for rushing ahead with this."

Sue Watkin, the chairwoman of the Huntington's Disease Association, adds: "It is obviously of great concern to people. It might actually deter people from taking tests because they fear the results will make them uninsurable. The reason a lot of people want to have a test for Huntington's is to find out if they might pass the disease on to their children."

However, Malcolm Tarling, a spokesman at the Association of British Insurers, replies: "Medical science works at such a rate that there is always going to be more and more information about a person's private medical history that is available to insurers. But 95 per cent of all life policies continue to be underwritten at ordinary rates."

Insurers cannot take genetic-testing information into account for life- insurance policies linked to a new domestic mortgage of pounds 100,000 or less. This rule comes up for review in December 2001.

Mr Cayton believes even this restriction may be abandoned soon. "Insurers have proved themselves to be untrustworthy over many issues, and I wouldn't trust their word on this either," he says.

The ABI's revised code of practice comes in the wake of accusations from Professor Martin Bobrow, a former member of the Human Genetics Advisory Commission. He claims insurers have reneged on an informal agreement to delay use of genetic testing until more research had been done. The ABI says that no such agreement has ever existed.

So what ways are there to beat genetic testing? Firstly, choose your insurer with care. Standard Life, Virgin Direct and Cornhill have all said they are happy to consider life insurance applications with no questions asked on genetic testing. They argue that the extra risk this exposes them to is negligible.

Martin Campbell, the research and development manager at Virgin Direct, says: "The reason why someone would have ended up having that genetic test would be a knowledge of their own family history, which made it look like they were at risk. We're going to see that family history when we ask them the questions that we do in the underwriting process."

Andrew Black, Standard Life's marketing manager, adds: "There are so few tests, and they are for such rare diseases, that we feel we won't need to see the results of any of those tests for the foreseeable future."

Secondly, simply avoid taking a genetic test. There is, after all, no medical treatment at present that can help you if you do have an increased risk of Alzheimer's disease or Huntington's chorea.

Telling lies on an application form is not to be advised, as this could invalidate the whole policy when you or your family come to make a claim. However, as long as you can honestly say that you have never undergone a genetic test at the point when you fill in the application form, the issue will never arise.

Mr Cayton says: "Do you really want this genetic test? There are other things that we can tell you about your potential risk without going so far as having a formal test. Those discussions might put your mind at rest."

Finally, delay your test until your insurance is confirmed. Ms Watkin suggests that people who are concerned about Huntington's chorea delay taking a genetic test until their insurance is sorted out.

Mark Howard, of the independent financial advisers Maddison Monetary Management, says: "The declaration on the application form is the important element. Providing everything is true at the point of declaration and the proposal is accepted, they can't renege on that contract. They can't do anything about that at all."