Genetic tests 'ripe for abuse'

Their are fears about the use of genetic testing

The current lack of regulation of tests for genetic diseases means they are likely to be abused by insurers, say experts.

The report, published in the Journal of The Royal Society of Medicine, comes on the day that representatives of insurance companies face a grilling from MPs over the issue.

The House of Commons Science and Technology Committee is worried that if insurance companies are permitted access to all such tests, then an "underclass" of people who cannot get life or health insurance will be created.

Doctors have found that a person's genetic makeup can contribute, either wholly or partly, to the development of serious diseases later in life.

In October last year, the Genetics and Insurance Committee (GAIC), part of the Department of Health, said life insurers should be able to use genetic test results for Huntingdon's Disease to help them decide what sort of cover to offer.

There are fears that this precedent could eventually lead to demands for tests for a variety of diseases associated with genetic makeup, such as breast cancer.

More and more diseases are being linked either wholly or partially with the presence of certain genes, and some are concerned that people with only a small additional chance of developing an illness might be refused even private health insurance.

The authors of the latest report, from the London School of Economics and Political Science, say the present situation produces a "strong potential" for the improper use of genetic testing data.

It argues that a "perceived threat" that insurers may misuse genetic tests could actually deter people from taking them, when, medically, this might be vital.

The UK lags behind other European countries in introducing rules to stop insurance companies doing what they liked with data.

"Among the countries that have pursued genetic testing regulations," they say," the GAIC's decision sets the UK apart and opens the way for the expanded use of genetic information by insurers without proper consideration of the ethical and social implications."

Code of practice

Policies should put the individuals first, rather than the interests of the insurance companies, says the report.

The insurance industry already has a code of practice. This states:

• insurance companies cannot ask people to take a genetic test
• they can, in some circumstances, ask for the results if someone has already had one.
• when the policy concerns life insurance for less than £100,000 in cover for a new mortgage, test results are not needed.

However, the British Medical Association says that it has some anecdotal evidence that the code is being flouted in some cases.

The House of Commons Science and Technology Committee will hear from representatives of major insurance companies on Wednesday.