BioWorld International Correspondent
LONDON - The use of genetic test results by insurance companies will be subject to an immediate three-year moratorium, after the Human Genetics Commission (HGC) said the existing system of self-regulation has failed.
Helena Kennedy, chair of the HGC, said, "We have profound misgivings about the industry's handling of [genetic] information, and its ability to keep its own house in order. I hope these proposals go some way to reassure the public."
The HGC, a UK government watchdog, said the moratorium would give time to establish a "clear and defensible regulatory system, which not only balances the interests of insurers, insured persons and the broader community, but also enjoys the confidence of the public."
The industry body, the Association of British Insurers, tried to pre-empt the three-year suspension by saying it would agree to a two-year halt. But Health Minister Alan Milburn has already said he will legislate to enforce a moratorium, if the HGC recommends it.
Under the current system, insurers are allowed to take into account only the results of a few specified and approved genetic tests, and they are not allowed to require applicants to take tests. But the HGC said it had evidence that some insurers were using non-approved tests, and that there was no way of monitoring and enforcing the voluntary code.
Kennedy said there is still "a great deal of uncertainty about the interpretation of many genetic tests. The significance to be attributed to many tests is still a matter of debate, and this issue needs to be further clarified." A clearer understanding of genetic testing will evolve, but it is undesirable to apply such a disputed technology at present, she said.
Kennedy highlighted three areas of concern. One is social exclusion. In recent decades, there has been much legislation designed to improve the position of those with disabilities. Free-for-all use of gene testing by insurers could reverse this progress, excluding those affected by genetic conditions, she said.
Her second concern is public trust. Already, there is evidence that people will not take tests in a clinical context, because they fear the results could be used against them, she said, adding that this could affect not only individual health and treatment, but also genetic screening programs.
Kennedy's third worry involves research. The public is becoming reluctant to give samples for research, and this could have far-reaching implications for progress in the treatment of disease.
The insurance industry is concerned that people who know they have high genetic risks will buy large amounts of insurance. To protect against this, the HGC said the moratorium would apply only on policies up to £500,000 (US$718,164). The other exception would be favorable genetic tests that an applicant chooses to reveal to a potential insurer.