"The insurance industry has had a pretty bad press," says Peter Maynard, research manager at Swiss Re Life & Health. "The focus has been negative - the belief that genetic tests are a threat to the public, that privacy is being invaded, that selection is being tightened up, and that insurance will be more difficult to get."
Much of that bad press stemmed from the way insurers bungled the disclosure of HIV test results in the 1980s. Now the Government has stepped in to make sure insurers do not abuse genetic data (see box). The new rules will give teeth to the Association of British Insurers (ABI) Code of Practice. The code states genetic test results will only affect premiums if they show a clearly increased risk of illness or death. The code forbids insurers from asking consumers to take genetic tests, and written reasons for any premium increase or application rejection must be provided on request.
So far, genetic tests are only relevant to eight conditions. These include Huntington's chorea - a neurological condition - Alzheimer's and certain types of hereditary breast cancer. Only people with a strong family history have tests for these disorders, which are usually carried out on the NHS and accompanied by counselling.
None of these tests will be available to insurers until the new independent assessment system has checked their validity. These checks assess whether there is an aberrant gene and whether that gene will cause problems in the future. But they only show the risk of developing an inherited disease.
Earlier this year, Swiss Re conducted focus group research to learn more about the public's views on genetic testing. Around 70 per cent of respondents believed tests to tell if someone is going to develop a disease are a good idea, while a surprising 41 per cent were willing to have a genetic test. Unsurprisingly, most believed they should not have to share the results with anyone. The 36 per cent who thought the results should be made public were asked with whom they would be willing to share information. Insurance companies came fourth behind GPs, children and partners - but ahead of employers, other family members and friends.
Naturally, the insurance industry wants to protect itself from people who know they are likely to develop a disease but do not say so and buy cover. This increases the potential for big claims and, underwriters argue, higher premiums.
Meanwhile, scientists are working on the human genome project, which aims to identify all 80,000 genes in human DNA. They are expected to reach this goal within the next decade. But once the project is complete, there could be serious social consequences if large numbers of people find cover unaffordable at a time when state provision for healthcare is shrinking. This scenario could lead to an uninsurable genetic and socio-economic underclass.
Some feel the way round this may be to move away from "risk-based" insurance towards an inclusive social fund.
"Maybe there needs to be a social policy in the longer term," says Veronica English, genetics project manager at the British Medical Association. "There are no easy answers, but we need to look at both sides of the argument."
Allison Carvalho is assistant editor of 'Insurance Age'.
genetics and INSURANCE
Last week health minister Tessa Jowell ruled out a total ban on insurers using genetic test information but announced new safeguards on genetic testing. The measures are expected to be in place early next year:
All types of genetic testing will be evaluated through an independent system before insurers can make use of any results
The Government's genetics advisory committee will monitor for any evidence that insurance worries are keeping people from taking a genetic test
There will be a better appeals procedure for people who believe their genetic information has been used inappropriately
The Government will ensure that unfair discrimination by insurers does not occur.