Bioethics is much too important to be left to bioethicists.
At the outset of his 2006 book, Choosing Children: Genes, Disability, and Design, Jonathan Glover asks:
Progress in genetics and in reproductive technologies gives us growing power to reduce the incidence of disabilities and disorders. Should we welcome this power, or should we fear its implications? (1)
The answer, over the next 115 pages, comes out to be something like “welcome this power, with some reservations”; notably (and sensibly enough), Glover rejects the idea that there is a bright line between using genetic technology to restore or maintain a person’s “normal” level of functioning, and using genetic technology to enhance functioning well beyond that level. His book thus could be seen as a reply to (or, at the very least, I teach it alongside) Michael Sandel’s The Case Against Perfection, which makes precisely that argument against “designer babies.” For Sandel, going beyond that “normal” level, blurry as the line might be, violates something important about our humanity: borrowing from theologian William F. May, Sandel insists that we must retain our “openness to the unbidden” (45), and that the attempt to extend our mastery over uncertainty paradoxically diminishes our freedom. Glover, by contrast, suggests that “eliminating a genetic disposition to shyness or laziness might help someone flourish, as might making them more cheerful or boosting their ability to sing or to learn languages” (75–76). “It is common,” he writes, “to say that genetic choices are acceptable when they are to avoid a disability or disorder, but objectionably ‘eugenic’ if they are to enhance ‘normal’ functioning. The medical boundary may seem the obvious line to defend against ‘designer babies.’ But making some enhancements may add to flourishing as much as eliminating some disabilities. If we are not motivated by the ugly attitudes [toward disability], if what we care about is really not disability but flourishing, the medical boundary may be impossible to defend” (36).
Two things strike me as remarkable about Glover’s book. The first is that he does not come to this conclusion without taking into consideration a wide variety of accounts of the lives of people with disabilities. For instance, even though he begins a discussion of blindness by writing, “since sight enriches our lives so much, it is hard not to see blindness as an obstacle to flourishing” (17), he proceeds to recount the stories of John Hull, whose terror at going blind was gradually replaced by a wholly new sense of himself and his world, and of “S.B.,” who became severely depressed after an operation restored his sight. “When blind he had lived with energy and enthusiasm,” writes Glover, “but when given sight he lost his peace and self-respect” (21). Glover’s opening chapter begins from the premise that “since the 1980s, ethical debate about disabilities and disorders has been transformed by the participation of those who have these conditions” (4), and credits the disability rights movement with having “brought out the extent to which society’s response to a medical condition contributes to whether or not it is a disability” (4). The second remarkable thing is that despite this careful consideration of the disability studies critique, Glover can nevertheless write, in a later chapter, “in this book disability has been contrasted with human flourishing” (88). Obviously, if your goal is to enhance human flourishing, and you see disability as inimical to flourishing, there is no way to account adequately for the ways in which people with disabilities might enjoy their lives more fully and thoroughly than people without disabilities.
How does Choosing Children do this? How does it credit people with disabilities for having transformed the debate, and then wind up back in the pre-transformation position of arguing that disabilities are to be contrasted with human flourishing? I think there are two distinctive problems with the book. One is that, like so many discussions of disability and bioethics, it conflates disability and disease at a key moment in the argument. The other is that it relies, at other key moments, on thought experiments and hypothetical questions that make no sense except in the “what if” world of bioethicists.
The first key moment involves Glover’s dismissal of the “expressivist” argument: “Choosing to have a child without certain disabilities need not come from any idea that disabled people are inferior. Nor does it entail that the world, or the gene pool, should be cleansed of disabled people” (28). This much is true; some prospective parents might feel, reasonably enough, that they are ill-equipped to raise a child with certain disabilities, and that this is more a judgment on them than on anyone with such disabilities. Moreover, Glover argues that we can contest the “ugly attitudes” toward disability so that such decisions about childbirth are not motivated by fear, prejudice, or stigma. Here, however, is whether the argument gets knotty.
I think that, other things being equal, it is good if the incidence of disabilities is reduced by parental choices to opt for potentially more flourishing children. But we should not deny the potential cost to which the expressivist argument draws attention. And we should try to reduce that cost as far as possible.
To do this, we need to send a clear signal that we do not have the ugly attitudes to disability. It is important to show that what we care about is our children’s flourishing; that this, and not shrinking from certain kids of people, or some horrible prospect of cleansing the world of them, is what motivates us. To think that a particular disability makes someone’s life less good is not one of the ugly attitudes. It does not mean that the person who has it is of any less value, or is less deserving of respect, than anyone else.
There are two ways in which we can show this. One is by making the comparison with other medical programmes. We want to defeat cancer, not because we lack respect for cancer and want to rid the world of them, but because of what cancer does to people. The existence of doctors, hospitals, and pharmaceuticals is not an insult to the sick, just a sign of the platitude that illness impairs human flourishing. And the same goes for programmes that aim to reduce the number of children born with HIV. The harm the expressivist argument points to comes through communication. And so, if we have the right attitudes, clear communication should reduce or even eliminate the harm. (35)
One might reasonably question whether thinking “a particular disability makes someone’s life less good” is not one of the ugly attitudes — or, if not “ugly,” at least “unjustified.” But what I want to point out is that the analogy to cancer and HIV construes disability as disease — indeed, as life-threatening disease. This seems to me to be a decisive mistake. Cancer, HIV, malaria, smallpox, polio, tuberculosis, cholera, bubonic plague: these are diseases whose eradication comes as close as anything can come to being an unqualified species-wide good. It is misleading, not to say tendentious, to understand all of disability in these terms. Are we racing to “cure” autism because it is like cancer? Do we want to “defeat” Down syndrome the way we want to “defeat” cancer? Glover argues carefully against many of the ugly attitudes that would stigmatize or seek to eliminate people with disabilities; but the idea that disability is best thought of as analogous to cancer cannot be called an “attractive” attitude.
As for those thought experiments and hypothetical questions: twice in his chapter on “Parental Choice and What We Owe to Our Children,” Glover relies on the work of bioethicist Derek Parfit. The first question is framed like so:
Suppose there are two medical programmes, each aiming to reduce the incidence of a particular inborn disability. People with the condition have lives that are still well worth living. But they still see it as a disability, something they would prefer not to have had. It can be caused by either of two medical problems in the child’s mother. The first problem affects the child during pregnancy. The second problem, which always disappears in two months, affects the child if the mother has it at the time of conception. (47)
The first program, then, targets the fetus in utero: “those testing positive are treated and so their children avoid the disability.” The second tests women before they become pregnant, and those who test positive are advised not to conceive until the two-month period has passed.
To this already ludicrously implausible scenario Glover, following Parfit, adds the crucial question: “suppose there is funding for only one of the programmes and so we have to decide between them. Is their moral importance equal, or does one of them have a stronger moral claim than the other?” (48) This then is yet another version of the classic “trolley problem,” in which we are asked to decide whether it is better that people with X disability not be born at all (because the prospective mothers wait two months and have different children altogether) while some people with X disability go “uncured” in utero, or better that people with X disability be “cured” in utero while others are born with the disability because their mothers went untreated.
I suppose this is the stuff of which bioethical debates are made, but may I be so rude as to point out that there is no such trolley? This thought experiment may be all well and good if the object is to ask people about the moral difference between foregoing a pregnancy that will result in a fetus with disabilities and treating a disabled fetus in utero (and miraculously “curing” it!). But it does not correspond to any imaginable scenario in the world we inhabit. (And there’s more: because, perhaps, “a disability is harder to bear if you know that people could have prevented it but chose not to do so,” Parfit adds that “we assume that those born with the disability do not know they could have been spared it” . Why not assume instead that those born with the disability are given a pony on their fifth birthday?) There simply are no known genetic conditions that present prospective parents with this kind of decision.
This is not a trivial objection. A few pages later, Glover discusses yet another hypothetical, this time in the context of determining what counts as a life worth living. In the course of asking whether “prospective parents [should] be under some moral pressure, at least, to consider whether it is right to bring into the world a child whose life is, by a small margin, just worth living” (54–55), Glover argues against the “zero-line view” in favor of a “minimum level” of flourishing. First, he poses an open-ended ethical question. “Some victims of horrendous abuse as children may later still find their lives worth living and be glad to have been born. Does this mean that a couple with a persistent record of terrible child abuse should still be serious candidates for fertility treatment? Should there not be some minimum level above the zero line?” (55). This should make us squirm: who among us wants to approve that couple for fertility treatments? But wait. How do we apply that question to matters of genetics and prenatal screening?
By way of bioethicists’ thought experiments, of course:
Many think the zero-line view sets the standard far too low. Where should the minimum level be set, and on what basis? Frances Kamm has suggested the line be normality. She discusses a hypothetical case (introduced by Derek Parfit) of a woman who knows that, if she conceives now, her child will have a life worth living but will be mildly retarded. The woman also knows that, if she waits, she will be able to have a normal child. Frances Kamm accepts that, having a life worth living, the child with mild retardation will not be harmed by being created. But she thinks the woman will still have done wrong by not waiting. This is not just a comparative point, based on the fact that the alternative child would have a better chance of flourishing. She says “even if she could produce no child except a mildly retarded one, it might be better for her not to produce any” and that the woman “would do wrong to produce a defective child when she could have easily avoided it.” (55)
There are three things to be said about this passage. The first is that Kamm is saying, in so many words, that it may be better that children with mild retardation — children who enjoy their lives — not be born. The second is that the Parfit-induced hypothetical that leads her to this stunning conclusion is, once again, totally implausible. There is no scenario — I repeat, no scenario, none whatsoever — in which any woman knows that, if she foregoes conception now, she will have a normal child later on. Earlier in the chapter, in the course of demonstrating that some children’s disabilities truly do place crushing emotional burdens on parents, Glover had adduced the case of Julia Hollander, mother of a child with significant brain damage: “the cause of her problem was not genetic,” Glover notes. “When she was born, the placenta peeled away early, and this destroyed her cerebral cortex” (40). Yes, well: this is quite terrible, but it should at least give pause to bioethicists who concoct scenarios in which women decline to initiate a pregnancy now in the assurance that they will have a normal child if they only wait. The world in which bioethicists propose such things, the world in which Kamm can chastise a woman who produces a “defective” child “when she could have easily (!) avoided it,” is a world without birth trauma, without conditions undiagnosable before birth (autism, pervasive developmental delay), without any sense of contingency — let alone an openness to the unbidden. Such trolley problems and what-if hypotheticals profoundly distort what it is like to contemplate having a child who may have a disability; indeed, they distort what it is like to have a child.
The third thing to be said about this discussion, then, is the thing with which I began this post: bioethics is much too important to be left to bioethicists. Now you know why I say so.