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Geneticists say that we are all, to some extent, the victims of our heredity: We each carry at least three defective genes and two-thirds of us will die for reasons connected with our genetic makeup.
At the same time, rapid advances in genetic science have resulted in the expansion of the number and range of genetic tests. As well as being of interest to potential carriers of mutant genes, these tests are attracting a great deal of attention from the life-insurance industries. "Insurers are primarily concerned that genetic testing will lead to a change in buying habits for insurance products," said Steve Jones, a genetics specialist at University College in London. "Studies have shown that people with poor genetic profiles would be more likely to take out insurance, while those at low risk would be less inclined to buy cover."
A growing number of insurers are trying to protect themselves by asking to see the results of genetic tests. But this has led to accusations of discrimination. A study conducted by Georgetown University and the U.S. Alliance of Genetic Support Groups surveyed the perceptions of 332 members of genetic support groups who had one or more of 101 different genetic disorders in their families. In the study, 25 percent of the respondents or affected family members said that they believed they had been refused life insurance as a result of a genetic disorder and 22 percent believed that they had been refused health insurance. Fear of genetic discrimination led 9 percent of the respondents or their family members to refuse to be tested for genetic conditions and 18 percent said they had refused to reveal genetic information to insurers. A spokeswoman for the support groups said that this fear of testing prevented people from making important lifestyle changes that could reduce the risks and seriousness of certain genetic conditions.
With most of these tests, a positive result means that the carrier of a particular gene has a high chance of developing the disease. Carriers of the BRCA 1 gene mutation, for example, are thought to have a 62 percent cumulative risk of developing breast cancer and an 11 percent risk of developing ovarian cancer before the age of 60. Carriers of the Huntington’s chorea gene, widely considered to be the most dreaded of single-gene abnormalities, will almost certainly develop the illness.
"The advent of single-gene testing has not had much of an impact on the insurance industry because the current generation of tests are for rare disorders;" said a London insurance underwriter. "Huntington’s chorea effects about 1 in every 10,000 people and familial breast cancer accounts for just 5 percent of all breast cancers. Moreover, insurers do not really need to see test results at present, as they can easily identify potential problems by looking at a proposer’s family medical history."
"Nevertheless, if genetic testing becomes commonplace in the future, as we expect it will, insurers will undoubtedly want access to this information," he added. "Of particular concern is the new generation of predictive tests for cancer, heart disease and other common ailments. These genetic tests are not clear-cut because environmental factors have to be taken into consideration when assessing risk."
The attitude of insurers toward genetic testing will differ according to the type of insurance. If you apply for private medical insurance, it is unlikely that you will be asked to reveal your family medical history or details of any genetic tests that have been performed. This is because medical insurance coverage is usually only available for a limited period and it generally excludes chronic conditions. But life insurance is a different matter. Many insurers will want to see genetic test results, although they may not always take these results into consideration in the underwriting process. For example, the Association of British Insurers recommends that genetic test results not be used for coverage below £100,000 ($159,000).
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