An argument often made against the genetic elimination of disability is that to prevent people with a particular genetic make-up being born is to disvalue, or even threaten, those people who actually have it. The thought is that the view that the world would be a better place without, say, Huntingdon’s Chorea, must imply that the world would be a better place without those people who currently have it. In opposition to this objection to the elimination of genetically based conditions, I argue (i) that there is no significant moral difference in this regard between the elimination of genetically based and other conditions; and thus (ii) that there is no such implication. As consideration of all sorts of non-genetic examples of a person’s condition shows, to disvalue that condition is not to disvalue the person whose condition it is. No negative attitude to polio sufferers is implied by the attempt to rid the world of polio, for example. Indeed, just the opposite conclusion can be drawn.
As our understanding of the genetic structure of our species has advanced, and our technological ability to manipulate that structure has become increasingly sophisticated, so we are increasingly able to screen foetuses for genetically based conditions. That much is uncontroversial. What is controversial, however, is what, if anything, it is morally right to do with this knowledge and this ability. On the one hand, to prevent, if we can, people being born who will suffer grievously on account of a condition brought about by their genetic make-up would seem at least morally permissible, if not morally required. On the other hand, if we do so, then what does that say about our attitudes to and treatment of currently living people who suffer from the condition in question?
There are of course two sorts of question at issue here: the moral question of the rights and wrongs of the matter, and the political question of what if anything ought to be done by way of social and/or legal policy. Suppose for instance that you think prostitution is morally wrong: then the policy question arises of what its legal status should be; but there is nothing inconsistent in thinking it morally wrong and at the same time thinking that it should not be illegal, if only because the moral impact of its having a particular legal status has also to be considered (both morally and politically).1 In this article, I attempt to address only the moral question, in the hope that whatever clarity is achieved on that score might come to inform policy.
The moral objection was made in particularly stark terms in the course of the row following the withdrawal of Peter Singer’s invitation to speak on the topic in Germany some twenty years ago, since when debate on the topic has largely remained stuck at the point it reached at that time. Singer’s view—that we ought to eliminate genetically based disability if we can—was characterized as amounting to, or at least implying, that the disabled ought to be eliminated. Here, for example, is Franz Christoph, sometime spokesperson for disability groups in Germany:
Singer himself countered it no less starkly:
… the woman holds that she is only able to bear a healthy child. Whether one likes it or not: … the woman who wants an abortion confirms an objectively negative social value judgment against the handicapped (Christoph, 1990: 13)
The question, then, is who is right: Christoph or Singer? I shall argue that it is Singer who is right and that eliminating disability and eliminating people who are disabled are utterly different propositions; that the Nazi practice of eugenics is one thing and the abortion of foetuses which would become disabled people is entirely another; and that the visceral response on the basis of which the connection is made is radically mistaken, no matter how sincere or how acutely felt it may be.
This is, of course, a fallacy. It is one thing to hold that we may justifiably take steps to ensure that the children we bring into the world face no special obstacles to living a happy and fulfilled life, and a quite different thing to deny to a living person who wants to go on living, the right to do just that, or to place less value on the life of a particular disabled person than one places on the lives of other people (Singer, 1992: 88)
Before embarking on the substantive argument, however, I need to clear three issues out of the way, lest they cloud the issue. First, I shall assume that there is no absolute moral prohibition on abortion. Those who disagree, of course, cannot begin to countenance even pre-implantation genetic diagnosis—let alone actual abortion—as a means of avoiding the birth of disabled children. But theirs is an entirely different objection to the one that is my concern here, namely that to prevent disabled people from coming into the world disvalues or otherwise harms presently living people who have that (or indeed some other) genetic disability. Second, nothing hangs on my use of the term ‘disability’ in preference to other terms: my argument is only that if there is anything that is a disability and which is not solely a reflection of social values, practices and attitudes, but rather a genetically founded state of biological affairs which cannot fail to constitute a disability under any conceivable social arrangements, then seeking to eliminate the genetic condition in question is a moral good and not a moral harm. I have in mind, for example, Zellweger Syndrome,2 or Alström Syndrome.3 Third, it is important to emphasize that I do not seek to deny that many disabled people feel disvalued, or even under threat, by this claim. What I do deny, however, is that how or what anyone feels about something is decisive in relation to what is to be thought about it—though of course what is thought and what is felt may coincide or may eventually come into line. Consider, for example, capital punishment; gay sex; or the welfare state: what people feel about these things, and however acutely, does not constitute decisive grounds on which to decide how these institutions or practices should be morally evaluated.
Genetically Based and Other Conditions
Let me start by thinking about conditions that are not genetically based: polio or leprosy, for example. Is the elimination of polio or of leprosy something to be welcomed? I am unaware of any arguments that it is not. And of course, that is hardly surprising, since polio and leprosy are universally agreed to be unalloyed harms. They do no good either to those who have these diseases or to anyone else; they do considerable harm to those who do have them; and they also indirectly harm others, namely those people who in various ways care about them. In brief, people suffer from polio or leprosy; and no one benefits from these diseases. That is why it is hard to see what an argument might even look like that polio or leprosy ought not to be eliminated. Polio is today on the verge of being eliminated from our world, just as smallpox has been; and it is conceivable that leprosy might similarly be eliminated. But in what way would their elimination redound against those living people suffering from polio or leprosy? Would we—we who do not suffer from these diseases—value these people less than we do? Is there the remotest reason to suppose that we would? And even if someone were to claim that the elimination of polio made them feel less sympathy for current polio sufferers, or that the elimination of leprosy made them respond with even greater revulsion to the sight of people with leprosy, that would signify nothing apart from a psychological fact about the person concerned. It would certainly show nothing about the moral appropriateness or otherwise of their response to the people concerned; or about how such people ought to be regarded and treated. On the contrary, in fact: to the extent that people suffering from, say, leprosy, are indeed the objects of negative visceral responses on the part of some, then to that extent their moral claim upon all of us is the greater. After all, why do we want to eliminate polio and leprosy? Or rather, why ought we eliminate polio and leprosy? The answer is surely and uncontroversially that polio and leprosy make people suffer. As Jonathan Glover similarly argues, ‘We want to defeat cancer, not because we lack respect for people with cancer and want to rid the world of them, but because of what cancer does to people’ (Glover, 2006: 35). That people who suffer from leprosy or polio or cancer are sometimes the object of ‘negative social value judgment’ (which they surely are, however wrongly) does not show that, if it can be, the cause of their suffering ought nevertheless not to be eliminated.
So how do, say, Alström Syndrome, Zellweger Syndrome or the better-known Huntingdon’s Chorea4—all of them genetically caused—differ from leprosy in this regard? All three make people suffer; all are unalloyed harms. The aetiology of all three has a genetic basis; that of leprosy does not. It follows, then, that if we should not evaluate their elimination in the same way as we evaluate the elimination of leprosy, then that must be because their having a genetic basis makes a moral difference. But what might that moral difference consist in?
One answer sometimes given is that to eliminate a range of genes from the human gene-pool might have unwelcome consequences, unforeseen or otherwise. So let us suppose that there might be currently unknown future benefits for the human species in retaining in the human gene-pool the genes indicative of Huntingdon’s Chorea, Alström Syndrome or Zellweger Syndrome. Does it follow from that (apparent) fact that some people have to suffer the relevant conditions for the good of humankind? Perhaps such a view is conceivable, unattractive though it is. Imagine a group of literal-minded religious enthusiasts who believe that that is how we have collectively to atone for humankind’s alleged original sin: perhaps it is conceivable that they might think something like that about these or other conditions. The question, however, is not one about people’s more or less bizarre beliefs, but rather about what good reason there could be for supposing this to be the case. Irrational enthusiasts apart, there would surely have to be at least some concrete evidence that eliminating the gene indicative of Huntingdon’s Chorea, etc., from the human gene-pool would have harmful consequences for even an unreconstructed utilitarian to begin to make such an argument. And in the absence, so far as I know, of any such evidence, there is no need even to address such a hypothetical utilitarian beyond just barely stating two points. First, such a position might very plausibly be regarded as a reductio ad absurdum of utilitarianism; consider Ursula le Guin’s short story, ‘Omelas’, in which the happiness of a society depends on the continued suffering of a child (le Guin, 1975). Second, there would also be powerful utilitarian arguments against such an argument; consider John Harris’s famous ‘The survival lottery’ (Harris, 1975), which, while often read as a utilitarian defence of a lottery for the supply of human organs for transplant, can just as easily be understood as a utilitarian undermining of such a proposal (as well as constituting, for some, a reductio of utilitarianism). Nor is the technological manner in which these diseases might be eliminated to the point here: as I indicated earlier, such an objection—to abortion (and to related matters)—is a different objection than the one with which I am concerned.
I therefore conclude that, so far, if eliminating leprosy or polio are morally laudable goals, then so is eliminating genetically based causes of human suffering such as Huntingdon’s Chorea. That one set of conditions is genetically based and the other not makes no moral difference here. So if the two sorts of case are morally different, then this must be because there is some other difference between the two than simply the fact that one consists in genetically based conditions and the other not.
Disability and Identity
The difference which is said to count is one that often arises—though of course it need not—from one condition’s being genetically based and the other not, even if it does not consist simply in that fact. Rather, it is this: some people’s sense of identity is mediated through what others see as their disability; and so a negative evaluation of the condition which is that ‘disability’ is perceived as a negative evaluation of themselves. That appears to be the logical construction underpinning, for instance, some deaf people’s wish to have children who are also deaf, as in the widely publicised case of Sharon Duchesneau and Candy McCullough in 2002 (BBC, 2002). To bring a deaf child into the world, it is claimed, and thus to enlarge the community of the deaf, is a means of asserting and defending one’s identity as a deaf person. [It is also claimed that as a deaf couple, ‘they would make better parents to a deaf child, because they would be better able to guide them’ (BBC 2002): but this is a separate argument and one that seems to me empirically controversial.] This might be an entirely reasonable position—given, what is another factual matter, that it is indeed the case that Duchesneau’s and McCullough’s view of their own identity, as well as that of others in the deaf community concerning both this couple and themselves, as in at least considerable part consisting in their being deaf people. I shall take it then that this does in fact represent the views, and the feelings, of those concerned.
However, important though this is, it is not conclusive. In particular, it runs counter to two objections. First, to the objection that disabled people (and not only disabled people, of course) rightly have to their disability (or any other characteristic they happen to have) coming to be understood as their central characteristic. Second, to the objection that one’s identity should not be taken as something defined (in this case) by that disability and thus one’s being understood by others—even defined by them (however illogically)—in terms of one’s disability. As an anonymous reviewer rightly pointed out, ‘I am not … primarily a woman, even though being a woman is a necessary part of my identity’: nonetheless, it is all too common for women to be regarded primarily as women, just because being such partly constitutes their identity. If that is not how people with disabilities ought to be regarded and understood—if people are not to be ‘defined’ by their need to use a wheelchair, say, or by their suffering from spina bifida or Alzheimer’s—then it cannot be the case that a negative evaluation of their condition is also a similarly negative evaluation of who they are. Either disability is a necessary constituent of identity or it is not. If it is not, then the identity-claim regarding deafness fails to do the work required of it. If it is, then (for example) people who are deaf are to be understood primarily as such, as deaf people. That however—to say the least—undermines precisely those considerations about respecting people on which the objection to eliminating genetically based disability is fundamentally predicated.
What Counts as a Disability?
This brings us to the second issue: what counts as a disability? Only if we can find a reasonably persuasive answer to that can we be in a position to address the question of which conditions, if any, should be screened out. Of course, this is a large and difficult question. But my concern here is not directly to answer it. Rather, my concern is to say something about how we might reasonably set about trying to answer it; and more particularly, how we should not try to answer it. It is of course the case that, for example, some deaf people might choose, if possible, to have deaf children, or not to make use of cochlear implants, since they do not take deafness to be a disability at all. Furthermore, it is doubtless the case too that some, possibly many, people with what is described by others as a disability do not regard the condition in question as something which has any sort of negative impact on their lives at all (apart, perhaps, from others’—mistaken—attitudes). Nor is it any less clearly the case that what is taken to count as a disability sometimes—perhaps often—does indeed depend on the extent to which the society in question is prepared to incorporate into various of its arrangements the needs of the people concerned, instead of just taking it for granted that there is a ‘normal’ range of needs such that it is those and only those that need to be incorporated. As Richard Hull points out particularly acutely, the ‘[T]ypes and experience of disadvantage can (again) be seen to be dependent on a particular social set up in the case of health and social support services’:
Not being able to walk is clearly a condition which does not have to present insurmountable problems, a condition that must constitute a disability under any conceivable social arrangements.
… many disabled people face a predominantly inaccessible built environment. This is especially true of those who rely on wheels as oppose to legs for locomotion. One reason for the built environment’s being so inaccessible to those who use wheels for locomotion is the prevalence of stairs. … the disadvantages entailed by an inaccessible built environment … evolve from the incompatibility of stairs and wheels. This begs the question as to what guarantees that one be disadvantaged in this regard. … If architecture were more sympathetic to wheels, those who rely on wheels for locomotion would face no disadvantage in accessing the built environment … (Hull, 1998: 203–204; cf. Hull, 2007: chs 1, 2).
But as I suggested earlier, that is not to say that all disability is to be understood solely as a social rather than as a functional matter. Alzheimer’s, for example, is a functional disability inasmuch as the impairment of memory in which it consists would be functionally disabling in any conceivable society: so are Zellweger Syndrome and Alström Syndrome. Many conditions of course fall somewhere between these, being to some extent disabilities on account of social norms of various sorts and to some extent forms of suffering which are independent of such norms: leprosy, for example, or Down’s Syndrome. As Jonathan Glover puts it, disability clearly ‘impairs the capacity for human flourishing’ (Glover, 2006: 9): but it may do so either because the state of affairs in question is one that goes largely or entirely unrecognized by the society in question (Hull’s example of stairs being the statistical, and thus the normative, norm); or because such a state of affairs cannot but impair the capacity for human flourishing in just any conceivable circumstances (Alzheimer’s being the statistical norm would preclude there in fact being any society at all); or because, to varying extents, some aspects of the disability fall into the former category and some into the latter [leprosy, Down’s Syndrome or Glover’s own example of AIDS (Glover, 2006: 13 ff.)].
Two questions need to be decided, therefore, if we are to make any reasonable decision about which, if any, genetically based (or indeed, just any) conditions it is right to eliminate. First: regarding those conditions that give rise to disability that is at least in part social, rather than purely functional, how ought it to be decided whether to eliminate the condition or socially to cater for people suffering from it? Second: regarding those conditions that give rise to disability that is at least in part functional (up to and including disabilities that are entirely functional, in the sense of being disabilities under any conceivable social arrangements), how ought it to be decided whether or not the suffering they entail is sufficient to deserve—or to demand—elimination? Apart from noting the parallel between the first question and deeply difficult issues in environmental ethics and politics about the nature and extent of our responsibilities to future generations, I shall leave it aside and focus only on the somewhat less difficult second question. Even then, however, I shall do no more than to offer some suggestions about how it might be approached.
Who Decides about What?
Both these questions are, broadly speaking, social questions: not only in the sense of their being questions about the organization of society, but also, more importantly for my argument here, in the sense that they require to be answered by society as a whole, and not by any one particular segment of it. In particular, they are not questions to be answered solely by those presently living people who are disabled. Certainly, the views of such people are important; but they cannot be decisive. For even if it were the case that some people with particular disabilities did not regard the condition in question as something which had any sort of negative impact on their lives, that is not an end of the matter. Rather, it is relevant information to be considered in responding to the question, since it is not one about whether or not my life is worth living, but about whether or not lives like mine in particular respects are worth avoiding. Whether or not a particular person finds their life worth living is one thing; whether a life like that is worth avoiding is quite another—even if whatever answers are given happen to coincide. To see this more clearly, it might be helpful to consider the opposite case. Imagine someone finding the conditions under which they find themselves so awful that they conclude that their life is not worth living; that does not imply that another person whose conditions of life were as close to identical as possible must find their own life not worth living. Suicide is only in the most exceptional circumstances a call to others to follow suit (in those, and only those, where martyrdom is at least as accurate a description as suicide of what is done, and hence in an important way not primarily, or perhaps not simply, an individual’s act).
Furthermore, the comparison called for here is not between two lives, mine and another person’s, but rather between a life—mine—and a possible life; that is to say, between an actual life and something that is not someone’s life at all. Again, I might conclude that my life is not worth living on account of its conditions: but it does not follow from that that I must, or even should, conclude also that someone else’s life, however similar to mine, is not worth living. Or I might conclude that my life, despite its conditions, is worth living—that is to say, that it is worth my living it—and still think that such lives were best avoided. Consider the condition of slavery, for example. Of course slavery (like the next example) is very different from functional genetic disability in terms of causation: nonetheless, it is similar in respect of this issue of what constitutes a sort of life worth living. Indeed, a central element in the argument I am making is that genetic disability is not sui generis. A slave might consider either that their life is worth living despite their being in slavery; or that it is not worth living, because they are in slavery. It follows from neither conclusion, however, that any other slave must suppose the same. Crucially, it does not follow from the claim in the former case—that their life is worth living—that slavery is not to be eradicated. Compare life in a Nazi concentration camp as described by Primo Levi (1989): his view that his own life was worth living, despite the conditions under which he was living it, clearly does not imply that the concentration camps ought not to have been eradicated. And as with both slavery and the concentration camps, so with other possible conditions of life, such as those of people who are in various ways disabled.
It is for these two reasons together—that one person’s evaluation of their own circumstances do not dictate a similar judgment on the part of others, and that it does not follow from a person’s positive evaluation of their life in any particular circumstances that those circumstances are ones that ought not to be eradicated—that the comparison between a current life and a non-existent life that bedevils all too much debate in this area entirely misses the point. Consider for instance Glover’s own discussion of Gauvin, the (almost wholly deaf) son of Sharon Duchesneau and Candy McCullough. He rightly points out that ‘Gauvin’s birth is not a disaster for him just because some other child who might have been born instead would have been able to hear’ (Glover, 2006: 23–24): being deaf does not disastrously impair a person’s capacity to flourish in any possible society, if indeed it impairs their capacity at all. But that is not the point. What matters is that if—and only if—being deaf does significantly impair a person’s capacity to flourish in a particular society then deliberately and unnecessarily to have brought a deaf person into the world is to have created—again deliberately and unnecessarily—a life worth avoiding. Thus, what is centrally at issue in trying to form a judgement about this particular case is this: what is the ‘particular society’ in question? Is it the (local) deaf community in which his parents live or some other (larger) community? There is of course another question lurking here: to what extent, if any, is it morally legitimate deliberately to bring into the world a person with a particular characteristic in order that that person might help bring about a change in social attitudes towards and evaluations of that characteristic and the people whose characteristic it is? But for purposes of the argument I am developing here, I shall assume that in Gauvin’s case at least it was not his parents’ intention to use him merely as a means to an end. Were that not the case, then the possible moral legitimacy of his parents’ choice would not even arise: it is surely wrong to treat someone—anyone—merely as a means to an end. Not, of course, that this distinguishes how we should evaluate his parents’ choice from how we should evaluate the choice made by very many people simply to have a child as a ‘lifestyle choice’.
So again, the fundamental question remains: who is to decide which disabilities, if any, to eliminate? Should it be the potential parents? Certainly, their views are relevant. But they are not decisive, just because it is not the parents alone who bear the costs and/or enjoy the pleasures of bringing a human being into the world; to reiterate the point about not using children merely as means to an end, parents do not own their children. Nor is it the parents alone who should decide either the scope or the nature of social support. Compare education. Or think of population policy quite generally. So should it then be the state that decides? Again, I think not: not the state alone, since the state is one constituent of society among others and no more owns the children who inhabit it than their parents do. Of course, like potential parents, the state is likely to have views here (in relation to its long-term responsibilities to future generations, for example). But while such views should inform decisions, they should not determine them. And this is not just because of slippery slope worries about the Nazis’ view of many lives as ‘not worthy of life’—the bogey usually invoked here—but because no state should, qua state, be able to rule on these matters.5
Vague and even unhelpful though the claim may perhaps seem, the only body fit to rule in these sorts of matters would appear to be society as a whole. Here is not the place to develop a theory of democratic rational decision-making. But neither its intellectual difficulties nor its absence in political practice imply either that such decisions cannot be made at all, or that particular constituencies alone—potential parents; specific communities; states—should make them. To invoke such limitations and difficulties as a decisive argument would be to debar any advocacy of rational decision-making in any area of social policy, and thus to reinforce the status quo whatever it might be and at whatever cost to those living under it. Of course, it is far from easy to decide just who might legitimately decide which genetic disabilities, if any, should be eliminated; but that is no reason to conclude that it is impossible to do so and that we should never try to do so.
The same of course applies to the substantive question itself of which disabilities, if any, must constitute serious impairment under just any social arrangements—in part, no doubt, because an answer to that question must await an answer to the question of who is to decide. But that is not to say that we can make no headway whatever. We can at least ask the same sorts of question here as elsewhere when what is at stake are the likely consequences of a practice. Compare voluntary euthanasia, for example. Legalizing that practice might be thought to be likely to lead to hospices becoming even more under-resourced than they already are; to unscrupulous relatives exerting pressure, if not worse; to over-enthusiasm on the part of health care workers becoming increasingly difficult to avoid; and doubtless to other things. What evidence is there that similarly negative consequences are likely to follow from eliminating genetically based disabilities? So far as I can see, there is, in the context of, broadly, contemporary societies, none. But that is of course far from a conclusive judgement: my point is not that the issue is irrelevant, but that this matter needs to be settled (as best it can) if the substantive question is to be answered.
However, even if I am right about that, there remains a very different sort of objection to eliminating genetically based disabilities, albeit still at least a partially consequentialist one. It is this: that, were a particular condition to have been eliminated through genetic screening, ‘I would never have been born’. The objection is understandable. But again, it is neither decisive nor even well-made. For, first, it is always the case that I would never have been born in the presence or absence of certain conditions. No person alive would have been born had it not been for a whole host of decisions, actions and circumstances. Let us suppose that, had it been possible to eliminate a particular disability, and had it been decided to do so, then this living person in front of me would not have been born. But what exactly is the force of this point supposed to be? Had the two people concerned decided to eliminate the possibility of pregnancy, then I would not have been born. Had they decided shortly after meeting that they would cease to meet, I would not have been born. Nor would I have been born if one or both of them had been killed in the second world war. The list of necessary conditions is indefinitely long.6 My life is in no way diminished or disvalued by that fact, however; that I might not have been born is supremely unimportant. So the claim that the ‘very personal reason that they might never have been born if their parents had had access to prenatal screening and a legal abortion’ (Kaplan, 1999: 131) is even relevant here, let alone decisive, is mistaken. That one—anyone—would (let alone ‘might’) ‘never have been born’ is no reason at all for one—for anyone—to object to the elimination of genetically based disability. The absence of the latter is only one among the indefinitely large set of conditions of one’s having been born; and thus it is no more significant than any other contingency.
Nonetheless, this objection, however rationally erroneous, clearly appears as a matter of fact to have some visceral force (as some of the discussions in which I have been involved around these issues have shown). So let me pursue the point a little further. What sort of thought is the thought that ‘it is better not to exist than to have a disability’ (Kaplan, 1999: 134)? For whom is it claimed to be better? For me, who is not disabled? That might be a rational judgement for me to make about my own life. But that is of course very different from someone else’s judgement that it would be better for me if I did not exist—though the latter is not necessarily an inappropriate one. Suppose I were in a persistent vegetative state, for example. More importantly, in the present context, both these judgements about my life—about the actual life of a presently living person—are very different from anyone’s judgement that such-and-such a sort of life is better not to bring into existence. As I argued earlier, the latter judgement is not a judgement about the life of a living person, but a quite different judgment, one about sorts of life. Yet again, consider slavery. The life of no living slave, whether now or in the past, is in the least diminished by the judgment that a life of slavery is to be avoided and that slavery—as a sort of life—should be eliminated. Or consider poverty. To seek to eliminate poverty from the world is not to diminish in any way the lives of people in poverty. Quite the contrary. Their lives are important enough for us to try to improve them; and to try to ensure that no other possible people, as yet unborn, should have to live such lives. Or consider the common attempt to ensure that one’s children’s lives go better than one’s own: people go to great lengths to try to make sure that their children’s lives are not led in the same conditions as their own. Do they thereby devalue their own lives? Or the lives of their children if they fail? Surely they do not.
Where the conditions concerned really do constitute disability; and where such disability cannot be avoided by changing social norms, or where it should not be avoided by changing them, so that the condition is no longer perceived as a disability but as normal: under these circumstances, eliminating disability devalues no one, whether that real disability is social, educational, physical or mental.7
My thanks to Stephen Wilkinson for comments on an early draft and to participants in a discussion at Keele University in January 2011, held under the auspices of the Royal Institute of Philosophy and organised by Sorcha Ui Chonnachtaig.