Fears raised over gene tests

The government's Genetics and Insurance Committee (GAIC) has agreed that the results of a genetic test for Huntington's disease can be used by companies when underwriting life insurance policies. The committee is going on to consider six more genetic tests, including one for breast cancer (see below).

The announcement has sent ripples of fear through the public. After all, if a test shows that you are going to develop a life-threatening disease, you are unlikely to be able to buy life insurance at an affordable price, if at all, so you will be unable to protect your family. And what happens if accurate tests to predict heart disease or stroke are developed?

To a certain extent this concern has developed after the event. Insurers have been demanding the results of any medical tests, including genetic tests, for years. The GAIC's role is simply to establish whether the results of these tests are sufficiently accurate for insurers to continue using them when assessing an applicant.

It will be left to the recently formed Human Genetics Commission, led by Baroness (Helena) Kennedy, to assess whether it is correct for insurers to demand access to this sensitive information. However, although insurers, represented by the Association of British Insurers, promised to abide by the findings of the GAIC, no such promise has been made about the Human Genetics Commission.

Cash answers some of your questions.

Can an insurer force me to take a genetic test?
No. An insurance company cannot demand that you undergo a genetic test as a condition of obtaining insurance. However, where someone has a family history of a particular genetic condition, they can be offered insurance at standard rates if they have had a genetic test and the result is negative.

If I take a test and it proves positive, do I have to tell the insurer?
You can buy up to £100,000 of life cover without revealing that you have taken a genetic test, provided the insurance is linked to the purchase of a new home. Some insurers, including Norwich Union, do not require the insurance to be linked to a mortgage. However, if you want to buy a larger amount of insurance and you fail to inform the insurer that you have taken a test which has proved positive, and the insurer later discovers this information, it has the right to void the policy.

If I test positive, will I be able to buy insurance?
This depends on the severity of the disease. Paul Cooper, principal underwriter at Swiss Re, says some insurers will cover women after they have suffered breast cancer, and that his company has underwritten policies for more than 20 people whose Huntington's tests have shown they will develop the condition. In underwriting such applicants, the insurer will look at the pattern of the disease in the applicant's family, and the number of repeats of the genetic mutation that causes it. 'The more repeats you have, the sooner you are likely to get the dis ease,' he says. 'But if it's not a strongly repeating pattern and you are looking for an insurance term of 15 to 20 years, for someone aged 30 where the disease is likely to develop at 50, it is possible to quote terms that are not too onerous.' If you can find an insurer willing to sell you cover, you will probably have to pay premiums that are 100-200 per cent higher than normal.

Why do insurers need this information?
Insurers say the tests help them to assess risk more accurately. They also argue that if applicants know that they are at risk of developing a life-threatening illness, they will take out huge insurance policies. This would push up the cost for others.

What happens if the GAIC decides some tests are insufficiently reliable?
The ABI has promised that its members will stop using the results of tests that are not deemed sufficiently reliable by the GAIC. Policyholders who are already paying extra premiums on the basis of results from such a test will have their policies reassessed.

Testable hereditary diseases

• Huntington's disease - formerly known as
Huntington's chorea - a brain disorder which
causes increasingly severe involuntary
movements, psychiatric illness and dementia.
Onset usually begins in mid-adulthood and death
occurs 15 to 20 years later. The children of an
affected parent have a 50 per cent chance of
inheriting the disease.

• Myotonic dystrophy - a neuromuscular disease
that causes progressive muscle wasting.

• Familial adenomatosis polyposis - the
development of large-bowel polyps, usually after
the age of 20, which can develop into bowel
cancer. The children of an affected person have a
50 per cent chance of developing the condition.
Those who test positive are offered removal of the
colon if appropriate.

• Multiple endocrine neoplasia - a rare condition
where benign or malignant tumours develop in
your endocrine glands.

• Familial Alzheimer's disease - kills nerve cells in
the brain, leading to the loss of memory and
language. The cause is believed to be
non-genetic in more than 95 per cent of cases.

• Hereditary breast cancer. A small number of
families have a specific mutation in the BRCA1 or
BRCA2 genes likely to cause a strong
predisposition to develop breast cancer.

• Hereditary motor and sensory neuropathy.
Varies in severity, but life expectancy is not
reduced for most people.