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Genetics and Insurance Committee approves use of Huntington's predictive test for insurance purposes
The Genetics and Insurance Committee (GAIC) has approved a predictive genetic test for use by insurance companies (see text of their decision). The test is a predictive test for Huntington's disease. This follows the Government's decision not to accept the recommendation of the Human Genetics Advisory Commission that there should be a moratorium on the use of predictive genetic tests by insurers (see the report of the Human Genetics Advisory Commission and the Government response). Instead, the Government set up GAIC to assess the actuarial validity of tests the insurance companies would like to use. The Huntington's application is the first GAIC has considered after issuing, earlier this year, an application form setting out the information insurers must provide when applying for permission to use a test. This does not mean that genetic tests have not previously been used by insurers. In fact, some tests, including the Huntington's test, had been used already by insurers under the Association of British Insurers' own voluntary code of practice. The continued use of these tests now depends on favourable assessment by GAIC. There have been strong reactions to GAIC's decision and to the Government's stance on the issue. Some, including MP Ian Gibson, fear that it represents the start of a "slippery slope" towards the creation of an un-insurable genetic underclass. Genetics researchers are concerned that allowing insurance companies access to genetic test results will deter families from participating in research. This has already been seen in families affectd by mutations in the breast cancer susceptibility genes BRCA1 and BRCA2 (tests not yet approved by GAIC). Such families are generally advised to set their insurance affairs in order before consenting to testing.
On the other side of the argument, the ABI points out that genetic information, in the form of family histories, has been used by insurers for many years in assessing risk, and that genetic testing is merely a refined version of this same principle. Indeed, genetic testing may relieve an individual of the "burden" of a family history of a disease if the test reveals that he or she has not inherited the gene variant in question. On average, 50% of people with a parent affected by Huntington's disease will, if they decide to be tested, discover that they do not carry the mutation. These people will then be insurable at a standard premium whereas on the basis of family history alone they would have had to pay substantially increased amounts. It is important to note, too, that insurance companies may not require anyone to take a genetic test, but if someone has taken a test approved by GAIC then the company has the right to be informed of the result in any insurance proposal.
The questions surrounding genetic testing and insurance are difficult ones, and it has yet to be seen how far GAIC will be prepared to go in approving tests. Huntington's disease and other rare single-gene diseases are far more straightforward in this respect that genetic predispositions to common diseases such as cancer and Alzheimer's disease. It has been argued that genetic tests for the latter are unlikely to prove actuarially valid and will face far greater difficulty in obtaining approval from GAIC. The "slippery slope" may, one hopes, prove less slippery than some fear.
