16 October 2000
Appeared in BioNews 079The decision by the Genetics and Insurance Committee (GAIC) last week to approve the use of genetic test results for Huntington's disease in assessing life insurance applications re-ignited a public debate about the dark side of advances in genetic science. According to the Daily Mail, Britain now leads the world in allowing genetic discrimination, while the National Consumer Council fears that people will be excluded from insurance cover, or may not take tests that could be in their health interests for fear of such an outcome. The facts suggest, however, that while there are real problems of discrimination and privacy to address in relation to third party use of genetic knowledge, we need to develop a more realistic sense of perspective on the issue of life insurance, and question why genetics figures so highly in these debates.
The reality is that very little changed last week. The insurance industry has used genetic tests for Huntington's in assessing applications for life insurance for a number of years, which the Government has never challenged in principle. Such results are also used in some other parts of the world in assessing life insurance claims. From the point of view of families affected by Huntington's, it is also worth pointing out that the primary difficulty remains the use of family history data. It is the possession of a family history of the condition that leads individuals to contemplate taking the definitive test in the first place, and they would have had to declare this history when applying for insurance whether or not they took the test. In purely numerical terms many more people know they have a family history than take the test. In practice many people who take the genetic test arrange insurance at family history rates before they do so.
This raises a more general point. Insurers currently use all kinds of medical data in assessing life insurance applications. Many genetic mutations either kill a person or leave them obviously unwell or disabled before they reach adulthood. Insurers do not need to use genetic tests to discriminate in the latter cases. The current controversy is over the use of predictive data; data on adults who are currently healthy but carry a genetic mutation that will or may lead to ill health in later life. Where that data is highly predictive, such as in relation to Huntington's, there is likely to be a family history evident already (and if there isn't, for whatever reason, it must be doubted whether the individual would be in possession of any genetic data to disclose). Beyond such rare disorders many experts who have considered the matter do not believe that tests for a genetic predisposition will be sufficiently predictive to matter much for life insurance purposes. It is also unlikely that they would be introduced on a widespread scale unless measures could be taken medically to reduce the risk.
The implication of all this is that the groups of people who will experience difficulty in achieving affordable life insurance cover in the future are the same people who experience difficulties now - those with existing disabilities and those with distinct family histories of late-onset single gene disorders. Could it be that we don't hear much about this because such issues don't tap so easily into anxiety about genetics?
John Gillott is policy officer at the Genetic Interest Group