Should we choose our children?

Abstract

Babies and children who have severe disabilities that can lead to an early death are often the subject of legal and medical debate. Just last month, the UK courts ruled that life-prolonging treatment could not be withdrawn from Baby MB, a 19-month old child with spinal muscular atrophy—an autosomal recessive disorder caused by an inherited genetic mutation. The doctors wanted to end life-sustaining ventilation, while the parents fought to keep their son alive. In the aftermath of the case, questions about how we choose our children have never seemed so timely. In Choosing Children: the Ethical Dilemmas of Genetic Intervention, Jonathan Glover offers much insight into this complex issue. So should the parents of Baby MB, if they knew they both carried the gene, have procreated at all? Should we be required—morally, if not legally—to put the interests of the child first, in order to allow our children, as Glover puts it so elegantly, to flourish and experience the glories of human life? And what conditions would indicate that we should not have children? These are not new dilemmas. I chose not to have amniocentesis when I was pregnant because, even had I been carrying a child with Down's syndrome, I would not have had an abortion. But the raft of available genetic tests and interventions has grown exponentially since then. Would I have felt differently if I were likely to carry a child with spinal muscular atrophy, given the suffering involved for the child? Probably yes. Some disabilities are so severe that they make it difficult to lead a reasonable life. However, many other disabilities do not come into this category, and we ought to be thinking about what we are saying to people with congenital disorders if we argue that genetic testing and interventions should be used to prevent their condition. Take Down's syndrome as an example. Many people with this syndrome live happy, productive lives. They might, had they not had Down's syndrome, have been even more fulfilled. But does that mean their lives should have been prevented? As Glover points out, in 2003 in the wake of guidance from the UK's National Institute for Clinical Excellence about offering pregnant women tests for Down's syndrome, a group of parents of children with this condition wrote: “Does British society really want to make this statement to our children with this syndrome, and the many adults with it who are living independent, fulfilling, and wonderful lives, that they shouldn't be here: they are such a burden that they should be eradicated before birth?” To choose not to have children with Down's syndrome is essentially a utilitarian and reductionist view of our children. But others might say that such children flourish less than they might have done without this syndrome, and that if we had used our scientific skills effectively, we could have improved them. But if we are prepared to say that about genetic intervention, why do other disadvantages, which are eminently susceptible to intervention, not get the same treatment? We know that children who live in abject poverty have limited opportunities. Would it be better if they had not been born? Similarly, many children who are subjected to various forms of mental cruelty and emotional deprivation suffer as a result of this treatment. Should they too not be born, and would that require some unspecified authority to vet would-be natural parents to see if they would raise children well, let alone any worries there may be about their genetic predispositions? And what about prenatal sex determination leading to the termination of female fetuses? Recent evidence from India points to the scale of this problem (Lancet 2006; 367: 211–18). If boys do better than girls in many societies, should we not permit intervention to allow only boys to be born? Social mores and equality law says no, but it may well be that choosing for our children would tell us to say yes. Glover believes these arguments about choosing children and how they are best able to flourish can be worked through to produce a shared set of values to guide us about what it is legitimate to do. Society will have to decide whether to allow people to opt for children with particular capacities for various things, on the basis that this will enable them to “fulfil” their lives. These will be the gene-rich children, materially different from their gene-poor peers. But this approach fails to address other things that affect children's chances to flourish, such as social factors. Why worry so much about genetic intervention when social intervention has been slow in coming, poorly thought through, and inadequate? Perhaps the clue lies in this very argument. We have been remarkably unsuccessful as a society in ridding ourselves of problems. We are simply not as clever as we think we are. This humanistic school of ethics is not based on any standard above, or beyond, ourselves. Glover admits as much: “Given the circumstances in which most of human evolution took place it can seem astonishing that humans have brains that can produce and understand quantum theory. But such astonishing facts about our capacities may make us forget that we too as a species are likely to have our intellectual limits.” He continues: “Perhaps we will be lucky.” But perhaps not. There is, within all this patient laying out of the philosophical arguments, a kind of hubris. We decide what human flourishing is. We can decide—particularly if we cross the medical boundary—what characteristics it is legitimate to change to improve the world. We are in charge, and our judgment, despite historical experience, is good enough. Glover is aware of how dangerous this is when he quotes Robert Nozick's well known warning: “It is helpful to imagine cavemen sitting together to think up what, for all time, will be the best possible society and then setting out to institute it. Do none of the reasons that make you smile at this apply to us?” Of course they do. And that is why sociological, political, medical, anthropological, psychological, and, yes, religious insights have to be applied here. It is not wrong to use our natural intelligence to change human beings, genetically or otherwise. But we need to be sure why we are doing it, convinced that we will not make serious mistakes in the doing, and recognise that our goals may not be those of future generations. We are only human. Thus far, we have placed a so-called medical boundary around these questions. But will this medical boundary hold? It is not so long ago that doctors decided that young women who got pregnant out of wedlock could be institutionalised for life. Moral degeneracy was a common medical term in the early 20th century, and doctors made value judgments on behalf of society that were surely not medical decisions in any real sense, but societal ones. Perhaps we now need to recognise that the medical boundary is long over, though we have been slow to admit it, and that the social boundaries are only beginning to make their presence felt. It may well be right to interfere genetically to remove the capacity for great cruelty and harm, but how else might that affect the human condition? There are no absolute answers here; careful regulation is surely the only way forward. As with many scientific advances, an unfettered free market will be too dangerous. At this stage, a modicum of humility is surely required, plus a restatement of that old ethical principle, primum non nocere.