Dave King examines the potential downsides of genetic testing and demands a fundamental debate about the value of human life
Wang Gangfeng/Panos Pictures
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 told 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.
This is the spectre haunting human genetics, a spectre that very few scientists care to discuss seriously. When pressed, geneticists insist that eugenics is an abuse of genetics by politicians and should not be allowed to hinder research. They argue that the world has learned the lessons of history, and that the return of state eugenics is not a serious threat. What this conveniently ignores is that, even now, over a fifth of the world's population is governed by an explicitly eugenic law. Last July, China implemented its Law on Maternal and Child Health Care, which requires couples to undergo pre-natal testing. If the child will be disabled, it must be aborted. If one member of a couple suffers from a sexually transmitted disease or mental illness they cannot marry unless they agree to long-term contraception.
Freedom from coercion
The key principle which the Chinese law violates, according to conventional medical ethics, is that outsiders, such as the state, should not interfere with people's reproductive choices. Freedom of choice and non-directive genetic counselling is the lynch-pin of the argument that genetics does not necessarily lead to eugenics. Freedom from outside coercion is also an essential principle. It is also true that the availability of pre-natal screening and abortion is seen as very positive by many women, particularly in families where there is already a child with a genetic disability. But in existing societies the choices that women make over abortion for disability are anything but free. Society exerts a variety of pressures which militate against the choice to continue with a pregnancy after a diagnosis of disability.
The strongest of these pressures is the prevalent oppression of people with disabilities. People's feelings about whether they could cope with a disabled child are strongly influenced by negative images of disability and misinformation about what disabled people's lives are like. Parents also know that they will have to deal with problems like lack of access, insufficient financial support and discrimination. Women know that in most cases they will be the ones looking after the child. There is also a lot of evidence that doctors and counsellors are anything but non-directive. Simply offering a test carries a presumption that parents will want to act on a 'bad' result.
In effect, all these social pressures amount to a strongly eugenic pressure on parents to abort, sometimes for quite minor disabilities. To highlight them does not imply blaming any woman who chooses to abort a disabled foetus. But the fact that the pressures go essentially unchallenged is in itself an important part of the oppression of disabled people. The philosopher, Philip Kitcher, has dubbed the existing situation 'laissez-faire eugenics'. For although no direct coercion is imposed and 'free choice' is allowed, the end result, the shaping of the future gene pool by social pressures and prejudices, is the same.
It seems likely that the current explosion of genetics and other technological changes, combined with economic pressures, will lead to a dramatic expansion of laissez-faire eugenics in the near future. As more genes are discovered which confer susceptibility to major diseases, our health will come to be seen as written in our genes. As genetics comes to dominate medicine it will become, in large part, a regime of management and control of genes.
In this climate the underlying presumptions of society against leaving things to chance will come powerfully into play. A social consensus will soon develop that it is irresponsible to refuse to undergo tests. We may soon start to hear that every child has the 'right' to a healthy genetic endowment.
The technical development which is likely to make widespread human genetic selection a realistic possibility is pre-implantation genetic diagnosis (PID), in which a single cell from an embryo is removed for genetic testing. Although PID is currently very restricted, it may soon become widely available due to rapid progress in reproductive technology. PID is performed together with in vitro fertilization (IVF) which produces, on average, ten embryos of which only two or three are implanted. Such embryos have a far lower moral and emotional weight than a foetus. And because there are ten embryos, parents will be tempted not merely to discard embryos with genetic disabilities but to pick those with the 'best' genetic profile.
At the same time as these technical developments are happening, governments around the world are trying to reduce the spiralling cost of healthcare and to cut welfare budgets. Accountants and bureaucrats will find it easy to persuade politicians that genetic screening is much cheaper than caring for a genetically disabled person. In the future, controlling the genes of our offspring may become an integral part of middle-class people's reproductive experience.
What can be done about this? Do we even want to do anything? For many people, the prospect of bringing reproduction under scientific control and improving the health of our children is wholly positive. If nobody is forcibly sterilized, what is the problem?
The most immediate reason is the effect that it would have on the liberation of disabled people. We need to listen to disabled people and learn to accept their judgements about which lives are worth living. If, instead, we choose to ignore this obligation and proceed blindly with an expanding program of genetic testing, we are essentially abandoning their struggle against oppression.
Under a laissez-faire regime it will also be impossible to maintain a strict dividing line between medical conditions and non-medical characteristics such as appearance, aptitudes and intelligence (assuming that genes influencing these characteristics can be found). The existence of a huge market for cosmetic surgery, and the prescription of growth hormone to normal, short children with no hormone deficiency show the direction things are likely to take.
Finally, once widespread laissez-faire eugenics is practised, it would be easy for governments to influence the process, not to eliminate particular social groups in the old-fashioned way, but to further goals of national policy, such as increased competitiveness and a lower healthcare budget. Laissez-faire eugenics could easily collapse into state-managed eugenics.
To combat this there must be a broad public debate on abortion and disability, a debate that recognizes the feminist truism that what seems personal is in fact political. In current debates the views of people with disabilities are rarely heard. Such debates should be led by people with disabilities. Ideally, the outcome of such a debate would be guidelines, with a certain amount of room left open for flexibility in particular cases. In the interim, we should adopt a policy of erring (if it is an error) on the side of caution: pre-natal genetic tests should be offered only for disorders which are fatal in childhood, or in which there is a very high degree of pain and suffering.
Secondly, we must make a commitment to combat those forces which make freedom of reproductive decision little more than a fiction. Some of those forces derive obviously from free-market liberalism, such as the penchant for cutting welfare and healthcare budgets. We must also renew our commitment to combating disability oppression and the sexism that dictates that the burden of care falls predominantly on women.
Finally, I believe that the current situation is positive in that it offers us the opportunity to re-open fundamental debates. Do we really believe that diversity of human life is an important value worth preserving? Is the avoidance of suffering our overriding moral value? And if we have the tools, can we resist the opportunity to take control of reproduction? Tackling the last question involves engaging with a fundamental critique of science, modernity and our ideas of progress. *
Wang Gangfeng/Panos Pictures
Dave King is a former geneticist and a writer and campaigner on genetics issues. He is the editor of GenEthics News.
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