The Department of Health’s Genetics and Insurance Committee (GAIC) has granted U.K. insurers permission to consider the results of genetic testing for Huntington’s Disease (also known as Huntington’s Chorea), a rare and usually fatal condition, that is genetically transmitted.
The decision intensified the controversy over the use of genetic testing by employers and insurers, particularly life companies, to assess an individual’s health risks. Consumer groups charge that use of the tests unfairly attaches higher risks to those potentially affected, making it more difficult for them to get a job, and more expensive to obtain insurance coverage.
According to Dr. John Durant, chairman of the GAIC, “The evidence presented demonstrates that the two tests for the Huntington’s gene are reliable and that an abnormal result is associated with significant clinical effects and with the increased probability of a claim on a life insurance policy.”
He emphasized, however, that, as many people with a family history of the disease are likely to have difficulty obtaining insurance, a normal test result would benefit them, as they would be eligible for standard rates.
Insurers are not allowed to require that applicants take genetic tests, for Huntington’s or any other possible medical condition, but if a person has already been tested, companies may ask for the results.
The increasing availability of these types of tests raises significant questions. The Netherlands, France and Norway have already banned there use by insurers, and the British government issued a statement calling for the Human Genetics Commission “to review the overall ethical and social issues around the use of genetic data.”
The GAIC has agreed to consider genetic tests for other conditions, including Alzheimer’s disease, myotonic dystrophy (a rare hereditary degenerative muscle disease) and certain types of inherited cancers.
The resulting conundrum places those who may be at risk from hereditary conditions in the difficult position of either foregoing tests, which could show that they did not have the suspect gene, or taking the tests, and then being required to disclose the results to potential employers or insurers. No procedures have yet been proposed to solve the problem.
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