Intentions, messages and meanings

Would-be parents can turn to gamete selection, donated embryos and pre-implantation genetic diagnosis (PGD) in order to avoid embryos with unwanted genetic traits. None of these efforts can be fool-proof, of course, but in general they offer some measure of control over the occurrence of disease and disabilities in future children. After gestation begins, fetal diagnostic procedures can identify genetic and developmental disorders, and parents may elect to terminate pregnancies in light of the results. As the power and scope of embryonic and fetal diagnostics is bound to increase over time, it is all the more dreadful to disabled people that clinical medicine is laying the foundations of a future with fewer and fewer people with disabilities in it. What some commentators object to in using reproductive interventions this way is the background assumption that children with disabilities are less valuable than others, an assumption that does not square with the way people with disabilities see their lives. This interpretation of reproductive interventions can be dispiriting to people with disabilities and those who hold them dear, and this interpretation can survive any amount of close parsing that the choice of able children does not necessarily express any inherent denigration of the disabled.

Let me suggest a few examples to make this point more fully. Clinical medicine and research are doing what they can to restore hearing loss where it occurs and prenatal interventions—such as gamete selection and PGD—open choices to parents about whether to try and avoid deafness in their children. Over time, more and more people will have access to the interventions that will give them this kind of choice, and it is not unreasonable for parents to want to confer the benefit of hearing on their children. I have argued, in fact, that parents have a prima facie duty to protect fundamental human capabilities in their children, including hearing.5 What this means is that the clinical, social and moral default is set against the emergence of deaf children and in favour of hearing so far as possible. For people who attach no special significance to their deafness, for people who live meaningful lives in the context of deaf culture, that default—and the future it entails—looks threatening. What is the countervailing force against this expression of disvalue? Only a few deaf parents here and there intentionally try to have deaf children.6 Even so, most deaf children are born to hearing parents, and those parents usually do what they can to ensure hearing for those children. This state of affairs is perceived as hurtful to people who are deaf without apology, no matter what others intend.

This same kind of issue has come up in debates about using prenatal diagnostics to choose the sexual orientation of children, which is only a hypothetical choice at this point. Some commentators worry that, if choice were possible, parents would overwhelmingly choose heterosexual children to the detriment of gay and lesbian people in a numerically diminished future.7 Playright Jonathan Tolins put the felt effects of control over sexual orientation on view in an unvarnished way. In his 1993 ‘Twilight of the Golds’, pregnant Suzanne gets genetic test results showing that her baby stands a 90% chance of being gay like her brother David. Suzanne loves her brother but nevertheless goes on to terminate the pregnancy, saying, “Why should we put someone else through that if we can help it? Why isn't it more humane to wait until we can bring a child with no disadvantages into the world?” David objects to the decision, saying, “I'm fighting for my life” or, again, “You're killing me”.8

It is, of course, not literally true that the choice to terminate a pregnancy because of a specific trait in a fetus or the likelihood of that trait emerging in a child ‘kills’ any already living adult with the trait in question. Except that we are not discussing a disability in this case but only an alleged ‘disadvantage’; advocates of choice here could invoke many of the same arguments deployed to defend the general right of parental choice to select the traits of their children, and some have done exactly that: a preference for A can be logically neutral about the value of B, where A is health or heterosexuality and B is disability or homosexuality.9 Even so, worry about culturally strong preferences for heterosexual children makes some commentators worry about the collective fate of gay men and lesbians.10

People who adhere to dwindling religions will have parallel experiences when others make choices that diminish their faith communities. As people walk away from religion A to join religion B, people in religion A feel hurt by those choices. Seeing parents who formerly professed religion track their children into religion B can be perceived as a choice inimical to the value of religion A, especially insofar as religion A's believers hold that their faith is true in ways other religions are not.

This is all by way of saying that intentions and their interpretations do not always mesh well enough to derive the latter from the former, especially since people can interpret the same action in different ways. Holm has made the point this way: “Those who witness an action or utterance will often make inferences concerning what the action is meant to express. These inferences may be wrong, but as long as they are epistemically warranted, the witnesses are justified in claiming that the action did express this or that”.11 In other words, so long as an interpretation does not contradict the observable facts, it can be understood as a legitimate account of the action, original intent on the part of the actor notwithstanding. For example, suppose a woman dotes utterly on her children—ferrying them to sports activities, offering extensive at-home education, putting away all her money for their futures. Several interpretations of this behaviour are possible: that she is selflessly and heroically enriching their lives and futures or that she is neglecting her own interests and development perhaps for psychologically suspect reasons or because of objectionable social expectations about women in mothers' roles. Both of these interpretations are consistent with the facts.

It will not do, therefore, to dismiss the expressivist argument as dependent on faulty readings or interpretations. Rather than trying to make them disappear into the logical ether, we should acknowledge the hurtful aspects of prenatal diagnostics for people with disabilities, but we should also ask what moral significance they have. Do people who are hurt by others' choices have any moral standing as a result of their ‘injury’? Do they have a moral cause of action sufficiently strong that would justify some kind of limitation on the choices that parents make to avoid children with disabilities?

The ‘hurtful’ choices of others

When parents turn to gamete selection, PGD or fetal imaging to avoid having children with disabilities, they cause no harms to people with disabilities of a kind that would justify restraint on those choices.

In the first instance, the choices that individual parents make in clinics are held in confidence and do not become public knowledge unless parents choose to make that disclosure themselves. The public's knowledge of these techniques mostly never passes from the general to the particular: a child who has no disability as the result of a clinically unassisted conception appears no different from a child who has no disability but whose birth was assisted by IVF, PGD and embryo transfer. The same holds true for parents who turn to prenatal diagnostics: they are not otherwise distinguishable in their appearance or behaviour. The mere existence of non-disabled people born with the assistance of prenatal diagnostics poses no threat in itself to people with disabilities insofar as the use of prenatal diagnostics has no outward social manifestation in the people involved, let alone a manifestation that interferes with the welfare of people with disabilities.

What critics of the expressivist argument have right is that a robust use of techniques to avoid children with disabilities can co-exist alongside an equally robust respect for the disabled. For example, a family may have a first child with Fragile X syndrome. Afterwards, the parents may turn to PGD to avoid the same syndrome in their future children and still manage to love all of them equally. It is therefore not obvious that the use of PGD to avoid Fragile X in later sons would be directly injurious to disabled children outside the family, let alone the firstborn child in the family. Not only that, but the widespread practice of prenatal diagnostics does not interfere with the ability of disabled people to form relationships, pursue an education, travel, profess a religion and even to benefit from social accommodations. In other words, the fundamental goods valuable to people with disabilities remain intact even as some parents decline to have children with disabilities.

Not all harms are direct harms, of course, and some harms occur by indirection, but neither do these harms necessarily threaten people with disabilities. To see why, let's suppose that would-be parents gain access to a broad array of prenatal diagnostics, regardless of their income or where they live in the world, and that prenatal diagnostics become the order of the day for people looking to have children. This speculation will always be tempered by political and fiscal realities, of course. In fact, some jurisdictions limit the kinds of prenatal diagnostics that are available or constrain their use, while some other jurisdictions are simply too poor or under-resourced to offer anything like the continuum of prenatal diagnostics that are available to the world's wealthiest people. But, for the sake of the argument, let's assume that parents find prenatal diagnostics easy to come by. If the past is any kind of predictive prologue, people would use these diagnostics widely—if available as a matter of course—to achieve non-disabled children where they think doing so would help the children and their families as a whole, rather than leave matters to chance. Let's suppose in consequence that, as the use of prenatal diagnostics becomes ever more widespread, the total number of people with disabilities falls significantly.

Under these circumstances, it is possible that a backlash could occur against parents who fail to prevent disabilities in their children. In this backlash, certain political commentators—arch libertarians among them—could demand that parents of children with disabilities shoulder the social costs of their children. These commentators could reject tax-supported healthcare or special needs education for the children, arguing that the families brought the costs on themselves. Over time, what safety net there is for children with disabilities might become threadbare and the overall tolerance for disabled children—and the adults they become—might diminish drastically.

In this scenario, diminished numbers and changes in prevailing social attitudes might well change the circumstances of people with disabilities, but there is no outcome here strong enough to justify limitations on parents using prenatal diagnostics as they wish. A drop in the number of disabled people is not an obviously remediable outcome because there is no requirement that they exist as either a fixed number in the population or as a percentage of the population, any more than there is a moral requirement that there be specific numbers of other kinds of people (such as people with a certain eye colour, speakers of vanishing languages, believers in classical Greek religions or people with exceptional intellectual capacities). Morally defensible choices that people make can alter the composition of society but, unless there is some countervailing reason why there must be—affirmatively—disabled people in the future and in numbers of a specific size, there is no good reason to intervene against parents' choices regarding prenatal diagnostics. It would be nice if there were flourishing communities to do the cultural work that benefits small groups of people, but I do not see how the responsibility for that socially desirable outcome belongs to individual parents as they take steps to choose traits in children, traits they believe to be beneficial to their children and families.

None of this is to say that diminished numbers justify diminished respect in any way for disabled people, but it is to say that it is philosophically hard to make the case that parents must make their choices about children in a way that preserves the existing ratio of disabled and able people. But suppose we object still, saying that the consequences would be broadly harmful in that life for people with disabilities became meaningfully more difficult. This is a real concern: small groups of people can get lost in political struggles, but moral philosophy does not condition respect for people on their numbers. So as long as the voices of those speaking for people with disabilities are heard and heeded as appropriate, the exact number of people involved may not matter.12 In any case, not all is lost simply because numbers dwindle or parents pass over options that could have avoided disabilities in their children. We should not automatically assume that parents' choices to use prenatal diagnostics to avoid disabled children mean that the disabled children who are born are not entitled to any social contributions to their welfare. For example, some non-libertarian theories of justice call for social contributions in the name of preserving important life options for people who face major disabilities, and these theories could be deployed against any social backlash.13 Even if people turn away from disabled children in significant numbers, that effect does not mean that respect for actual people with disabilities must diminish but, even if that respect did erode somewhat, it does not follow that putting barriers between parents and prenatal diagnostics would be the only defensible solution to maintain it if some other less intrusive intervention could accomplish the same goal, for example, heightened sanctions for violations of anti-discrimination laws.

Yet, what if? What if existing legal protections for disabled people went systematically unenforced or were even repealed? What if the situation of people with disabilities became, in fact, worse off in significant measure? I suspect that if this situation were to occur, it would probably not be related solely to the widespread use of prenatal diagnostics. Social tolerance can degrade, sometimes quickly, but it seems hard to imagine just how this might come about simply because people took steps to avoid having children with disabilities. Not all parents would do this; some prenatal interventions to avoid children with disabilities will fail and new genetic mutations will continue to occur, with the result that people with disabilities will continue to exist for most imaginable futures. If there were a direct causal link between the use of prenatal diagnostics and a worse off social fate for people with disabilities, we could begin to discuss possible restrictions on them, but only if there were no other ways of containing the objectionable treatment of people with disabilities and if it could be shown that there were a direct causal connection between the use of prenatal diagnostics and this increased objectionable treatment.

It should probably also be said that declining to intervene against parents using prenatal diagnostics to avoid disabled children does not mean that their choices are always morally virtuous. Some parents might well want to avoid disabled children because of distorted views about the effects of disabilities on the value of a life, to the child first of all and to the family as well. This is to say that some motives for wanting to choose against children with disabilities are not entirely innocent. However, as we do not inspect the motives of all would-be parents as they take steps to have children, it is hard to make the case that, out of all the possible ill-founded and morally objectionable motives for having children, only those that bear on disabilities should be scrutinised and thwarted if found wanting. Moving to test parental motives for wanting the kind of children they want would undercut a valuable domain of freedom it is important to protect from state intrusion. It would also open to debate the extraordinarily difficult questions of how to inspect parents' motives for wanting to and how to judge them worthy or not. As matters stand, we have rightly chosen to withdraw the state from inspecting and evaluating parents' motives and permit them to make decisions that make sense to them, even if their motives would not always pass muster in other contexts.

The significance of hurtful outcomes

There is a certain irony to contemporary discussions about efforts to avoid disabilities in children in that they are taking place at a time at which people with disabilities enjoy the greatest degree of protection they have ever known in human history. In the USA, for example, the Americans with Disabilities Act (1990) extended broad accommodations to people with physical or mental impairments that limit one or more major life activities and to people with records of those impairments or who are regarded as having such impairments. In the UK the Disability Discrimination Act (1995) forbids discrimination against people with disabilities in employment; the provision of goods, facilities and services; and the disposal or management of premises. As a matter of international goals, the 2006 United Nations Convention on the Rights of Persons with Disabilities sets out broad rights of respect and access for disabled people. This is not to say that all societies fully observe their own laws or the UN Convention, or that people with disabilities yet enjoy all the rights and goods they should. It is to say that political and moral respect for people with disabilities seems only to be on the increase in ways that can remain intact alongside the use of assisted reproductive treatments (ARTs). For example, the UN Convention on Disabilities asserts ‘the right of children with disabilities to preserve their identities’. In short, children should be entitled to embrace their identities as disabled. Yet this kind of goal can coexist alongside the widespread use of prenatal diagnostics to avoid children with disabilities if we distinguish between children born with disabilities and the selection against such children by interventions undertaken before birth or even before their conception. Yet worry about the future continues if only because the social default seems so deeply set against disabilities. One high water mark in the debate about choosing the traits of children is Savulescu's argument that, when it comes to the traits of children, parents should make decisions that give their children the prospect of the best lives, which viewpoint seems inimical to children with disabilities.14 However, Savulescu's view is overbroad: parents are not required to give their children the best possible lives, but only opportunities for meaningful lives, and not even Savulescu says that parents should be forbidden by law from choosing children with (some) disabilities if that's what they really want to do.15

It is a mistake to paper over the hurts that people with disabilities can feel as biomedicine opens the prospect of a world with fewer and fewer such people. Yet hurtful effects are to be found wherever people don't like the choices made by others with regard to deeply personal matters of culture, religion, politics and identity. The theory and practice of a democratic society require exposure to a certain amount of hurtful effects as the consequence of respect for rights that are important to human welfare and governance. The hurtful effects to be found in parents' efforts to protect the welfare of their children do not rise to a level that would justify intervention against those choices, even if people with disabilities are stung or insulted that some parents try to avoid disabilities in their children. Those felt hurts do not otherwise interfere with the access and equity that are importance for justice, so long as access and equity in important social goods for people with disabilities remains the rule, any indirect harms—such as diminishing numbers—do not either justify constraining parents' use of prenatal diagnostics. Unless choices in reproductive interventions cause otherwise unavoidable and direct harms to people now living or indirect harms of a magnitude equivalent to a direct harm, these choices remain morally defensible, all the more so since there is no obligation to deliver a future humanity that in all ways reflects the existing distribution of human traits in the present, disabilities included.