Magazine article New Internationalist

Testing Times: Dave King Examines the Potential Downsides of Genetic Testing and Demands a Fundamental Debate about the Value of Human Life

Magazine article New Internationalist

Testing Times: Dave King Examines the Potential Downsides of Genetic Testing and Demands a Fundamental Debate about the Value of Human Life

Article excerpt

PUT yourself in the following position: you are a woman whose mother and aunt both died from breast cancer, so you know that it may be genetic. You have just received some advertising from a commercial genetic-testing company, urging you to take a test which will cost $2,500. Do you take the test, even though the only thing you can do if you test positive is to have both breasts removed (and even this is no guarantee you won't develop cancer)? Can you cope with the news? How will your family react to the knowledge that they too may carry the gene? And what do you do when you have to fill in your life-insurance form? These are not abstract dilemmas, taken from some parlour game or TV show. but current reality for thousands of women in the US. There can be no doubt that the revolution in human genetics will, eventually, bring medical benefits for some, although it is unlikely to do much for people in the Third World. Knowledge of human genes will eventually lead to a better understanding of disease, which in turn will lead to new drugs. There is even the possibility of correcting the effects of mutated genes by gene therapy -- at the moment still in its infancy. In the meantime, we will be left with genetic tests and the difficult ethical and social problems they raise. The most obvious of these problems is genetic discrimination. In the 1970s many carriers of the gene for sickle-cell anaemia were excluded from the US Air Force and from employment at the Du Pont chemical company. The pretext was that they were hyper-susceptible to chemicals or likely to collapse at high altitude. In fact, people with only one copy of the sickle-cell gene are perfectly healthy, but the discrimination was allowed to continue for years. Undoubtedly this was because the majority of sickle-cell carriers are African-Americans. Many people fear that we are about to see a return of this kind of discrimination. In the US there have already been hundreds of cases of discrimination by health and life insurers and employers. One pregnant mother was fold that if she did not have an abortion, because her child was sure to suffer from cystic fibrosis, her whole family's heath-insurance cover would be cancelled. Raft of bills The US Congress is now facing a raft of bills aiming to outlaw such discrimination. The biotechnology industry is supporting the legislation, because it knows that many people will refuse to take tests if they know they will face discrimination. But the US insurance industry continues to fight legislation, fearing that people who know they are likely to die young will take out large insurance policies. The insurance industry in Britain has taken the same position, although it has said that it will ignore genetic test results for certain types of life-insurance policy. The next few years will see further efforts to outlaw genetic discrimination, and to create a right of genetic privacy. What such laws cannot easily address is social discrimination. Once word gets out that someone has 'bad genes', will they become socially shunned? The genetic revolution is also leading to a spread of genetic determinism in popular culture. Two years ago, The Bell Curve, a book peddling the outdated myth that intelligence is genetic, and that black people are less intelligent than white, was a best-seller in the US. There has even been a revival of the old idea that 'criminality' is genetic. People are beginning to believe that everything about us is determined by genes and fixed for life. These attitudes always go together with a reduced tolerance for people who are disabled or different. Such social trends should remind us of what happened in the last great wave of enthusiasm for genetics, in the first half of the century. Over 20 US states passed laws mandating the sterilization of those judged 'feebleminded' by eugenics experts who believe in improving the 'quality' of the human race. In Germany, the combination of eugenics with Nazi racial theory led first to the murder of thousands of disabled people and, ultimately, to the horrors of the death camps. …

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