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Riders on the Genetic Storm New Scientist 10 Feb 96

WHO's afraid of genetic testing? Obviously not the British government to judge by its decision last month to ignore the recommendations of a report from the House of Commons Select Committee on Science and Technology and leave the policing of genetic testing to an advisory committee and the industry itself. That there is much to fear in the potential misuse of genetic testing I is already evident from the volume of criticism the decision has attracted (see Focus). A powerful gene watchdog, with powers to control the quality and uses of genetic testing, is going to be sorely needed. Genetic tests are already readily available which show whether you are likely to develop Huntington's disease or cystic fibrosis (the latter is available by mail order). Coming soon are tests which will show whether a woman is likely to develop a particular form of breast cancer. A little ftirther off are tests to determine your susceptibility to colon cancer. And beyond that are more complicated tests which may eventually show whether you are predisposed to various cancers and heart attack-perhaps even tests which will predict personality traits and intelligence levels. But in the future that is being built in the US today, employers are testing job applicants to find, out which could be genetically susceptible to the ill-effects of certain industrial chemicals. Of course, in the best of all possible worlds, this could be seen as an attempt to increase protection for individuals at special risk in the workplace. But what if it proved cost-effective to allow higher levels of pollution in a plant and oniv hire workers whose genes showed they would be able to withstand it? The select committee recommended that genetic screening for employment purposes should be contemplated only when "the dangers cannot be eliminated or significantly reduced by reasonable measures". Not the sternest of injunctions perhaps, but even that will be completely ignored without a human genetics commission in possession of all its teeth. And, perhaps even more worryingly, can the insurance industry really be left to police itself? It mav be reasonable to refuse health insurance to a @eavy smoker who has taken a conscious decision to ignore the risks of lung disease, but what about people who carry or have a genetic disease? Through no fault of their own, they could well end up being refused health insurance or life assurance. Without legislation, the insurance industry and a public looking for bargains ivill not [email protected] it easy to resolve this moral dilemma. It might seem simple to prohibit the use of genetic data by insurance companies. But the likely result is that individuals who know they are at risk from a genetic disease will exploit the system bv taking out extra insurance. Another apparently simple alternative is for insurers to agree that no one should be refused coverbut the costs for high-risk people should be spread equally throughout the other policy holders. This is also likely to collapse in a free market because people who know they are not at risk will search for insurers willing to give them big discounts. No one has yet come up with any simple method of dealing with the unfairness of our genetic inheritance. We cannot now ignore it, nor without total commitment from the government can we ensure that no one is disadvantaged by it. That is why we need tough legislation to preempt any abuses while we struggle to find the right path through yet another moral minefield.