Bioethicists sometimes bristled at that title, so I suppose I should preface my argument with a hashtag such as #notallbioethicists. But the people I discuss are pretty mainstream, influential figures; they are not fringe characters housed in some makeshift Quonset hut adjacent to the main Bioethics Building. And I begin with a book I have mentioned earlier, Jonathan Glover’s Choosing Children: Genes, Disability, and Design. On the book’s opening page, 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?
The answer turns 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 can thus 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; instead, Sandel insists that we must retain our “openness to the unbidden” and that the attempt to extend our mastery over uncertainty paradoxically diminishes our freedom. Glover, by contrast, argues that
it is common 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.
The medical boundary may be impossible to defend no matter what the rationale, because Sandel’s argument unfortunately relies on an unquestioned and highly problematic idea of the “normal.” I was struck by this reliance the first time I taught Sandel’s book to undergraduates, precisely because they unanimously agreed with Sandel: genetic and medical interventions are OK if they are a means to restoring someone to a baseline of normal, but not if they are used to enhance our abilities and take us into the realm of comic-book superheroes. “Now I find this curious,” I said in one class. “For ten weeks in this course you’ve challenged and historicized and deconstructed the idea of the ‘normal.’ You’ve learned how the idea of the ‘normal’ has served as the primary tool of oppression not only for people with physical and intellectual disabilities but also for gay, lesbian, bi, and trans populations. And suddenly now you want it back? Seriously?” Besides, what norm are we talking about? I have mentioned my need for reading glasses. Can I have restorative surgery that brings me back to the species norm for eyesight? And is 20/20 the species norm or the species ideal? And what of the fact that in my prime, my eyesight was closer to 20/15? Do I get that back instead of the species average? And as for the students who complained that we are “playing God” with these genetic and medical techniques, I presume they are not taking that attitude toward antibiotics.
Two things strike me as remarkable about Glover’s book. The first is that he does not come to his pro-enhancement conclusion without taking into consideration a wide variety of accounts of the lives of people with disabilities. For instance, even though Glover 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,” he proceeds to recount the stories of John Hull, whose terror at going blind was gradually replaced by a wholly new and surprisingly pleasant 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.” 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,” and he 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.”
The second remarkable thing is that despite this seemingly 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.” 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 some people with disabilities might enjoy their lives more fully and thoroughly than some 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 what is known as 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.” 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 where 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 kinds 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.
One might reasonably question whether thinking “a particular disability makes someone’s life less good” is not one of the ugly attitudes toward disability—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. 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: In his chapter “Parental Choice and What We Owe to Our Children,” Glover relies on the work of influential bioethicist Derek Parfit. At one point Glover discusses a hypothetical question 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,” Glover argues against the “zero-line view”—in which a life is just barely tolerable—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?” 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:
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.”
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 have lives worth living—not be born. (See how blinkered and destructive the concept of the “normal” child can be?) The second is that the Parfit-induced hypothetical that leads Kamm to this stunning conclusion is 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 presented 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.”
Imogen has fits, and will never walk or talk. She will need help with feeding. She will be in and out of hospital all her life. She cannot smile or make eye contact. She cannot communicate except by crying. Her expectation of life is about twenty years.
Imogen Hollander was sentenced to a life of much pain and many limitations—and Hollander had almost no social supports for her child. Glover is right to conclude that “such a severe disability brings out how the thought that a parent is ‘selfish’ to hope for a child without disability can be cruel and unfair. No one should be criticized for wanting to escape the problems faced by Julia Hollander”—or, for that matter, the problems faced by Imogen. But this example of severe disability caused by birth trauma should 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 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.
So the third thing to be said about this discussion is that bioethics is much too important to be left to bioethicists.
I focus on Glover—and I teach his book—not because he is the most emphatic of the pro-enhancement bioethicists but because he is one of the most moderate. It is not hard to find, in the “let a thousand enhancements bloom” camp, people who not only advocate unregulated genetic engineering but deride skeptics as Luddites and superstitious fools. And then there is the “transhumanist” group, who can’t wait until we all fuse with computers and solve everything. That sounds like a party I will be happy to miss.
None of the advocates of enhancement are deterred by counterarguments that their programs and visions amount to a form of eugenics. For them, the evil aspect of eugenics, from the early days of social Darwinism to its culmination in the Holocaust, was that it involved state coercion—not that it promoted deeply mistaken and ultimately catastrophic beliefs about genetics, evolution, and disability. This time, we are assured, we have the science all figured out, and we owe it to ourselves and to the future of our species to let people choose whatever enhancements they desire—more or less. This position is commonly known as “liberal eugenics,” and the term is not meant as a criticism. It accurately expresses the position that for its proponents, eugenics would be perfectly all right—indeed, a great good—if only it did not involve state officials, laws, and institutions. Glover does not go quite that far; he endorses Joel Feinberg’s idea that, as a species, we have “a right to an open future,” one key component of which is the permission for individual parents to choose what they believe to be best for their children. (This might also be part of Glover’s response to Sandel, even if Sandel is not explicitly addressed in Glover’s book: You want an openness to the unbidden, you say; all right then, I’ll see you an individual’s openness to the unbidden and raise you a species’ right to an open future.) But Glover acknowledges that an untrammeled, free-market liberal eugenics might be undesirable:
Could leaving people free to choose genes for their children at the genetic supermarket have serious social costs? If so, we may need a regulated market, on a European model. On this system, there would be no state plan to change people’s genes or to improve the gene pool, but there might be limitations on genetic choices thought to be against the public interest. Social intervention would act only as a filter. Which choices, if any, should be excluded would be part of democratic debate.
On one hand, this position is considerably more circumspect than that of famed biologist James Watson, who reliably embarrasses himself every few years by delivering himself of the opinion that African people are inferior to the rest of the species, that it would be desirable to screen for “pretty” girls and to abort fetuses found to be gay, and that “you would have to be crazy to say you wanted” a child with Down syndrome, “because that child has no future.” As Watson put it in 2003, “I am against society imposing rules on individuals for how they want to use genetic knowledge. Just let people decide what they want to do.” Glover cites this remark and takes his distance from it—hence his admission that we may need “a regulated market, on a European model.” But on the other hand, Glover’s position is remarkably vague—and remarkably naive, politically. Apparently, the mechanism that will determine which enhancements are acceptable will be democratic deliberation—
not just on a European model, but everywhere on the globe, in order to thwart “genetic tourism” as people shop for enhancements their own nations forbid.
Glover acknowledges the difficulties of regulating such a market. Surely we would find ourselves in the world of Gattaca before we knew it, screening not only for all “major inheritable diseases” but also for things like myopia, baldness, obesity, and addictive susceptibility—all of which are mentioned, and treated as unambiguously undesirable, by the film’s genetics counselor, who just happens to be black (the surprising implication is that he lives in a society obsessed by genetics but utterly indifferent to race)—and, as no one but me seems to have noticed, bald. Lest I sound like one of those wearisome scolds who wanders into genetics debates from their homes in the humanities armed with nothing but copies of Huxley’s Brave New World and Hawthorne’s short story “The Birthmark,” I assure you that the Gattaca scenario is well within the realm of possibility in Glover’s book. He writes:
Sometimes disabilities arouse a special revulsion, creating a desire to cleanse the world of them. But, without this special revulsion, the case for reducing the incidence of disorders and disabilities is that they are obstacles to people having flourishing lives. And this is equally a reason for making other choices, including genetic ones, to remove non-medical impediments to flourishing. 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.
Life as Jamie Knows It Page 21