By Jonathan Glover, the author of Choosing Children: the Ethical Dilemmas of Genetic Intervention, and director of the Centre of Medical Law and Ethics at King’s College London (THE GUARDIAN, 06/05/06):
The intrusive criticism directed at Dr Patricia Rashbrook for becoming pregnant at 62 insists that her choice is unfair to the child. This is misguided. Suppose it is a disadvantage to have an older mother. If so, adoption agencies may prefer younger women. But fertility treatment is not adoption. The choice for Dr Rashbrook’s child is not between having her or some other mother. The alternative is not to be born at all. Is having an older mother really such a burden that life is not worth living? The confused outrage reflects our wider unease when once-fixed contours of human life become alterable. We are both hopeful and fearful of the choices made possible by assisted reproduction, especially when combined with genetics.
When poverty started being seen not as inevitable, but as something alterable, being poor moved from the realm of bad luck to the realm of injustice. Progress in genetics and in reproductive technologies gives us greater ability to reduce the incidence of some disabilities. These disabilities, once seen as bad luck, may be starting to seem like an injustice to eliminate.
But pessimists point out that this elimination of disability is not by curing people. It is by preventing the birth of people with disabilities, either by pre-implantation diagnosis or more often by antenatal screening and termination of pregnancy. Some liken this to Nazi eugenics. There is also concern about the impact of these choices on people now living with disabilities.
Revulsion against Nazi eugenics is deep and uncontroversial. It involved coercive sterilisation of whole groups of people with disorders such as schizophrenia. In a grim rehearsal of the later genocide, it led to the murder by gassing of 70,000 psychiatric patients. But to call current screening programmes Nazi is extremely unfair. The Nazis thought that compassion for individuals was weakness and that individual choice should be sacrificed to the state’s interest in promoting a «healthy» gene pool. The values underlying current screening could not be more different. They are based sometimes on the compassionate desire to spare children a severe burden of disability, and sometimes on giving parents choice over whether to have a child with a disability.
The other charge is more worrying. At least in theory we all accept that people with disabilities are entitled to equality of respect. But what can it do to your sense of being an equally valued member of society to know that programmes exist to help people avoid having a child like you? The disability rights movement correctly points out that one of the worst features of disability is the negative attitudes of others. There is the frequent assumption that a disability is a person’s main feature, together with the «does he take sugar?» approach and sometimes a shying away that some have said may be a faint echo of the way wolves turn on a wounded member of the pack.
Not so long ago, otherwise highly civilised people had attitudes that now horrify us. In 1915, Virginia Woolf described a walk on which she met «a long line of imbeciles». She wrote that «everyone in that long line was a miserable ineffective shuffling idiotic creature, with no forehead or no chin & and an imbecile grin, or a wild, suspicious stare. It was perfectly horrible. They should certainly be killed.» By turning this thought into reality, the Nazis have made such ugly attitudes now impossible to express and, one hopes, to have. But their stark expression then raises the question as to whether some milder version lingers on today.
Should people be able to use the screening programmes to decide whether or not to have a child with a disability? On this question, many will feel the pull of the values on both sides.
People sometimes postpone having children until they are better able to provide for them or until they have somewhere more child-friendly to live. It does not seem wrong in these ways to choose to have a child you hope will have the best chance of a good life. Is choosing to have a child without a disability so different? Disability rights campaigners correctly point out that many of the disadvantages of having a disability are partly caused by poor social provision or by prejudice. And we all know that many people with disabilities have very good lives and that many able-bodied people do not. But, granting all this, a child with a disability still seems likely to start with a disadvantage, even if it is one that many manage triumphantly to overcome. It does not seem wrong for parents to say that they hope any child of theirs will have as few disadvantages as possible.
But there is also the pull in the other direction of not wanting to send signals that will make things worse for people now living with disabilities. The conflict goes deep. We want parents to be free to decide to have a child without disability, and we want to avoid damaging the self-esteem of people already disadvantaged.
Those of us who believe parents should be free to take these decisions should try to reduce the human cost of these choices. We need to send a clear signal that we do not have the ugly attitudes to disability; to show that what we care about is our children having as good a chance in life as possible, that we are not shrinking from people with disabilities.
We can show this in two ways. One is to support all moves to reduce both the functional disadvantages and the stigma of disabilities. The other is to point out the link with other medical programmes. We want children to be born without HIV, not because we lack respect for people with HIV and want to rid the world of them, but because of what the condition does to people. Modern medicine is not an insult to the sick, but a sign of the platitude that illness impairs people’s lives. The screening programmes will harm the self-esteem of people with disabilities only if they seem to express ugly attitudes of the kind Virginia Woolf had. What screening programmes are taken to express is partly a matter of communication. If we do not have the ugly attitudes, clear communication should reduce or eliminate the risk to people’s sense of having equality of respect.
Some concern about genetic choices is about a slide towards «designer babies». Of course we cannot just design babies by choosing their genes. Many of the human characteristics that matter most are not the product of genes alone but of a complex interaction between genes and many other factors including the environment before and after birth. But since genes often make some contribution, potential parents sometimes may want to make genetic choices for non-medical reasons.
This is why many want to draw the line at the medical boundary. But if the reason for making the medical, genetic choices is concern for our children having the best opportunity to have good lives, it may be hard to draw the line here. Sometimes non-medical changes may improve the chance of a good life as much as medical ones. There may be huge drawbacks to allowing non-medical choices, including problems of inequalities and genetic competitiveness. But to avoid them we may need better thinking than mere reliance on the medical boundary.