Information and discrimination

This does not mean that parents might not be made more aware of the issue of discrimination and the role of social support in alleviating the effects of impairment as part of the officially nondirective counseling process that attends prenatal testing practices. Indeed, to the extent that the decision to terminate or continue a pregnancy should be as informed as possible,²¹

such information could be seen as necessary. The resulting discussion would mean that the woman or couple would reflect on their reasons for seeking a termination in relation to issues of social support and discrimination. Yet, because the issue of discrimination is a moral one, to incorporate some information about or discussion of this issue into the ethos of nondirective counseling would entail careful thought about and perhaps some reevaluation of that process. In the United States in particular, the scope under the U.S. Supreme Court abortion decision of Planned Parenthood of Southeastern Pennsylvania v. Casey to consider the interests of the fetus (through the State's interest in potential life) is finely balanced, because too much concern (e.g., by promoting childbirth) will be considered a burden on the abortion right.²²

Indeed, this aspect would also have to be addressed generally in relation to attempts better to inform parents about what it is like to raise an impaired child. Arguably, prospective parents may wish to know that studies now show that “there is a level of agreement approaching consensus that the overall adaptational profile of families who have children with disabilities basically resembles the overall profile for families in general (including children with and without disabilities)” and also that “family responses to disability are immensely variable.”²³

Yet, although it is undesirable if a decision not to terminate an affected pregnancy is viewed negatively, the position in which parents fear that the decision to terminate will be viewed negatively must likewise be avoided. Indeed, as Erik Parens and Adrienne Asch have noted, the fact that many families cope well with stress does not mean that it is “unreasonable or morally problematic” for parents to decide to avoid it where possible.²⁴ Furthermore, they note that “[s]keptics about the [above] research findings and interpretations … suspect that the research reviewed does not tell the whole story and that a child with a disability poses substantial heartache, difficulty, and burden to families that far exceed in kind and degree the stresses modern parents typically face.”²⁵

Information and assumptions about suffering

Attitudes toward impairment can also helpfully be challenged and informational issues explored through discussions with people with impairments. For instance, Prescilla Alderson undertook a series of interviews with adults who have one of a number of different conditions: cystic fibrosis, sickle cell anemia, thalassaemia, Down's syndrome, and spina bifida. She sought their views about their lives and about screening practices. Her findings make revealing reading. Alderson sets out to “challenge general assumptions, by showing how these interviewees did not fit the negative images propounded in the prenatal medical literature”.²⁶

This clearly relates to the distinction between medical and social models of disability discussed earlier. Importantly, she found that those interviewed felt they suffered more from social stigma than from their actual physical conditions. A recurring theme was of “adaptation, ingenuity and a resilience that grows through accepting and surmounting difficulties.” (Alderson acknowledges that qualitative research of the kind undertaken here cannot claim necessarily to be representative.)

She compares this with the concern, which she thinks is inherent in prenatal screening practices, to avoid difficulties, noting that in any event these are an inherent aspect of the human experience and that some degree of disability is inevitable at both ends of life. She is troubled by our “fearful avoidance of disability,” which she considers is “liable to diminish people rather than freeing them into new achievement and confidence,” as would occur if we were instead to promote ways to support the lives of those with disabilities. A central implication seems to be the need to redress the informational imbalance that has come to be of such concern in this area. Accordingly, she asks why there is not further discussion of the potential range of the severity of a condition, of the possibility of new treatments for some conditions, and of the possibility that abortions may be preventing lives that are worth living. There may also be a “mismatch” between the severity of a physical disability and the way a given life is enjoyed and valued. In this way, she challenges the assumption that it is “kinder” to terminate because of the potential severity of the condition in any given case, calling into question once more the accuracy of current information practices. In effect, Alderson draws attention to the need for better information in the course of screening practices. Implicitly, her work also highlights that we think more carefully about whose interests we think and tell ourselves are really at stake in screening practices.

Indeed, an unstated implication of these interviews is the need to consider how much parental versus children's interests are of central concern in prenatal screening and abortion. I address this question, which goes to the heart of the moral justification for screening and termination practices, below. Interestingly, those interviewed held a range of views about screening and termination practices, with those with sickle cell anemia, thalassaemia, and cystic fibrosis tending to be in favor, provided the information was accurate (currently unlikely, they thought). They also respected the parents' possible decision to terminate, while hoping that a given pregnancy would continue. (Indeed, it would likely be very difficult actively to support termination when this implies that one would not have been born.) By contrast, those with Down's syndrome and spina bifida, which are the subject of the most routine (therefore potentially the most unreflective, undebated) screening, were the least happy with the relevant practices.

Of course, although it is critical that parents better understand the interests of the prospective child as well as their own, it should be remembered that parents can and do choose whether to have children and that this constitutes a significant change from the time when it was simply expected that parents would reproduce. In turn, this is bound to impact on the manner in which parents view this enterprise. Indeed, arguing that better information should be provided does not commit one to a view as to what is the better parental course of action thereafter and the issue of information provision and discussion is clearly very sensitive. Interestingly, James Nelson has questioned whether “interfering” with reproductive autonomy is the right approach, or whether it would not be better to focus on educating people more widely about disability.²⁷

On this view, prenatal diagnosis is “at worst the symptom, not the disease.” Although “interference” with reproductive autonomy would be needed less if people were more informed about disability issues in the first place, the success of public education programs will always be uncertain. Thus, perhaps both approaches are required.

The fetus and personhood

Regarding the first of these points, it is often argued that if the fetus (or embryo) is not in fact a person, then no rights are violated when its life is terminated (or the embryo is not implanted) and nothing is thereby said about the rights of born people, including those with disabilities.³⁵

We know that in law—in the United States, England, and more broadly in the Commonwealth—the fetus is not a person and arguably it is not one morally.³⁶ Nevertheless, although crucial in its ability to protect the interests of a pregnant woman, the rule that the fetus is not a legal person (and the view that it is not one morally) can seem like a rather technical point that may not always be fully convincing in itself when it comes to justifying fetal death. This is so even if the rule answers the issue of rights violation. For instance, to say that a pregnant woman has the right to refuse medical treatment because the fetus lacks legal status does not tell us anything about why she should have that right; it simply ensures that she has it.³⁷ A similar point could be made about the statement that abortion is legal because the fetus is not a legal person: An account of the justifiability of abortion that looks to the importance of a woman's interests in this context is much better placed to justify the abortion right.³⁸ What are we to make, then, of the suggestion that because the fetus is not a person and abortion does not violate its rights, at most offense to people with disabilities can be caused when a fetus is selectively aborted? The accompanying thought, of course, is that offense cannot be the cause for the curtailment of freedoms in a liberal society.

This may well be so, but offense can be a pretty significant issue.³⁹

In the context of PND, selective abortion, and PGD, one implication is that we need to address how offense can be minimized.⁴⁰ For instance, the widespread screening for Down's syndrome can mean that children born with Down's are regarded as “mistakes.”⁴¹ Indeed, the routine nature of screening, coupled with the lack of at least overt moral reflection on this process, can be interpreted as an overzealous attempt to eliminate disability. Further, in many people's minds responsibility and the avoidance of disabled births are linked.⁴² In this sense, unfortunately prenatal testing may sometimes be seen not so much as being about trying to give greater control to couples as to the circumstances in which they become parents, but rather as a key feature of good parenting.⁴³ The need for debate acknowledging the highly moral nature of screening and associated abortion practices⁴⁴ and an approach to screening that sensitively provides a “more balanced” picture of what it is like to live with a disability, both from the child's and the parents' perspectives,⁴⁵ has already been noted and I now turn to the second aspect of the expressivist objection.

Devaluing impairments but equally valuing those with impairments

The issue of offense is also present at some level in the idea that one cannot rationally seek both to avoid impairments and equally value the life of someone with an impairment. Allan Buchanan and others have suggested that there “are many instances in which we devalue (and seek to avoid) certain characteristics that some individuals have without devaluing individuals who have them.”⁴⁶

This is surely true. At some level, however, it is preferable if it convinces the person with those characteristics. For this to occur effectively requires that that person can “separate” themselves from their negative characteristic or impairment. This may be particularly difficult in the case of prenatal screening because the avoidance of the impairment—through abortion—is equivalent to the avoidance of that particular person. A person with Down's, then, who might well have been aborted, may find it hard to accept both that Down's, particularly in its more severe manifestations, might be viewed negatively and yet that her life is said to be of equal value to her non-Down's sibling: Although she might see this distinction, it would be understandable if she did not.⁴⁷

The difficulty, in effect, is that although there is a conceptual distinction between the disvalue of the impairment on the one hand and the value of a life of someone with that impairment on the other, in the practice of prenatal testing and abortion the impairment and the actual life are both avoided one and the same, so that that particular individual will never come to exist. This requires some acknowledgment. With abortion in general, of course, it is also true that the person whom the fetus would have become is not and will never be known. The difference is that in the latter case there was never any concern about a feature of the particular fetus.

Does it help to stress that the practice of prenatal testing and abortion is aiming at the impairment, such that one does not yet know—and will never know—the person whom the fetus would otherwise have come to be? In fact, this itself can be interpreted negatively: It is sometimes said that in the practice of selective abortion the potential person has been reduced to his or her impairment.⁴⁸

In reality, of course, all that is known about the potential person at this time is that he or she will have an impairment. As Asch interprets this point, however, “this one characteristic” is the basis for a decision to terminate.⁴⁹ Note that Asch's use of the word “characteristic” obscures the point that, as she admits, “the trait of disability may not be neutral.” (On the other hand, she also criticizes “the majority” for “see[ing] disability as a form of human difference that is worse than other types of difference”.)

Asch's point is part of her argument that although abortion in general may be defensible as being in a woman's interests, abortion of the disabled fetus in particular says something about the fetus rather than the interests of the pregnant woman, as is normally the case.⁵⁰

Her point is that, in the case of an abortion that is not concerned with fetal disability a woman may have very strong reasons for wanting to avoid reproduction due, say, to her current life situation, but that in the case of an abortion of a disabled fetus, she wishes to have a child and her reasons for aborting simply relate to the particular fetus. The implication seems to be either that aborting the particular fetus does not have a strong relation to her reproductive autonomy interests, which Asch appears to want to limit to an interest in avoiding reproduction, or that to claim a connection between the reproductive interests of the parents and the characteristics of the fetus is problematic or offensive in some way.

With regard to the first point—that aborting the particular fetus does not have a strong relation to a woman's reproductive autonomy interests—the reproductive interests of the pregnant woman (and her partner) might not in fact be so easily separated from the characteristics of the particular fetus, as Asch would seem to require. Turning first to the most straightforward of examples, the birth of a child with Tay-Sachs will impact hugely on parents, causing them great emotional distress as the child's condition deteriorates and he dies, having lived at most four to five years. Indeed, it might be said that by seeking to avoid the birth of such a child the parents are thereby expressing an aspect of their own interests in reproduction, which are thus more extensive than simply choosing whether or not to procreate.⁵¹

In such a case, of course, parents can also be legitimately concerned to prevent a certain degree of suffering in the prospective child. The suffering has to be extreme, of course, for it not to be in the fetus's interests to be born.

In less extreme and much more common cases, however, it has already been noted that we should be wary both of making assumptions about a child's suffering and of the relevance of the language of suffering.⁵²

The “personal tragedy” model of disability is another formulation of such assumptions.⁵³ Arguably we should not presume a connection between disability and suffering.⁵⁴ Further, if being born in any given case is compatible with having a good or reasonable quality of life, then one cannot say that it is not in the fetus's interests (or embryo's—loosely understood because arguably it has none until it acquires them as a fetus at sentience) to be born. This will be the case for a huge array of conditions for which we currently routinely screen. In such cases, if parents have an interest in avoiding certain experiences that the birth of a given child might entail, parental and fetal interests may well become opposed to one another. In this light, we must be honest about whose interests we might really have in mind.

To the extent that the prevention of a child's suffering cannot be seen as the real issue in a given termination, which will very often be the case, we need to reflect further on the nature and strength of the parents' interests. I have already suggested, in agreement with various others, that if one can decide whether to reproduce, some degree of control over roughly what that might involve is arguably entailed, both morally and legally.⁵⁵

I cannot defend this fully here, but it may be that the desire to abort for reasons related to serious fetal impairments is justified because such reasons may seriously invoke the parents' reproductive autonomy interests and thereby determine whether or not they reproduce.⁵⁶ Importantly however, for this line of thought to have much application requires that, as we move away from the extremes of conditions such as Tay-Sachs, other conditions are deemed “sufficiently serious” meaningfully to invoke reproductive autonomy and to justify fetal death.

Yet the degree of disagreement, including among genetics professionals, about what counts as “serious” is one of the most difficult issues in this context.⁵⁷

Although we likely have some sense of these issues at the extremes—for instance Tay-Sachs versus the webbing of two toes⁵⁸ or, say, a susceptibility to moderate obesity—difficulties attach to the large array of “midspectrum” conditions. A complicating factor is the question of the legitimacy of differing perspectives on these issues—medical, parental, and those of people with disabilities (who may in part “speak” for or about the fetus). In this way, the question of the meaning of seriousness is in part a question of “serious for whom?”⁵⁹ An argument of the disability critique has been that health professionals working in prenatal testing (rather than, say, pediatric care) have partial understanding of what living with certain conditions is like.⁶⁰ This is related to the distinction between medical and social models of disability. Because of this, arguably the views of people with disabilities should be given some thought when we reflect on the interests of the fetus in being or not being born. Indeed, “serious” for the child the embryo or fetus will become may have its own set of meanings and uncertainties, which may turn in part on its own mental attitude, the reactions of others, and the social conditions it encounters. The perspective of people with disabilities may also be helpful to parents in their perceptions of what the future will be like if they continue with the pregnancy of an “affected” fetus. Where birth is compatible with a good or reasonable quality of life for the child but the parents wish to avoid a potentially more difficult or distressing rearing experience, we are faced with a conflict of interests between the fetus and its parents. In such a case, it is the parents' (perception of their) interests that may be particularly invoked when we reflect on the question of seriousness.

The discussion so far shows that analyzing the relationship between the reproductive interests of the pregnant woman (and her partner) and the characteristics of the particular fetus is clearly complex, as there are considerable difficulties in judging when a possible child's condition will be “serious” and hence when parental interests will be seriously invoked. In this regard, we may have to defer here, to some extent, to liberalism's recognition of the scope for reasonable disagreement. This may go hand in hand with a realization that arguably parental interests are the most important, especially before fetal viability.

Where does this leave us with regard to what might be a second interpretation of Asch's point—that to claim a connection between the reproductive interests of the parents and the characteristics of the fetus is in some way offensive? Indeed, what are the implications of the discussion so far for the expressivist objection that one cannot both devalue an impairment and equally value the life of a person with that impairment? If parents decide to abort a fetus affected by cystic fibrosis, does this say something about an already born child with cystic fibrosis, the parents, or both? Cases have been made out for each of the first two possibilities and the likely complexities of meaning in this context have also been explored.⁶¹

For instance, James Nelson argues that there may not be the direct relationship between meaning and intention that Buchanan's analysis of the expressivist objection may entail. Nelson's view “is that even considered as a social practice, the meaning of testing and abortion remain both vague and ambiguous, and insofar as this practice does enfold objectionable meanings, the way to unseat them is not by restricting access to information and medical services.” Overall, he observes that “[t]he meanings of decisions, practices and policies that involve screening and abortion cannot be determined outside the context of a broader set of decisions, practices, and policies as they affect people with disabilities, as well as women and family life more generally.” To return then to my question, on the one hand I think it is right that the action of aborting a child with cystic fibrosis is not intended to express anything about an already born child with this condition. The action does mean, however, that the parents do not themselves want a child with cystic fibrosis.⁶² On the other hand, then, that they prefer to abort such a child may in turn be offensive or hurtful to children or adults with cystic fibrosis. Where do we go from here?

Arguably, consistent with the above thoughts, the case for justifying such offense can be made out in the case of serious impairments in a prospective child because these will significantly impact on its parents. In other words, in such cases the parents' reproductive interests will be seriously invoked. In this way, any offense to people with impairments caused by selecting against such impairments might be seen as unfortunate but justifiable. By contrast, because relatively trivial impairments or features do not begin seriously to implicate parental interests, it would be hard to argue that screening and abortion in relation to these could justify offense to those with impairments. In fact, such practices could be especially offensive to them, perhaps increasing the stigma felt by them.⁶³

This does not mean, however, that the possibility of this latter “unjustifiable offense” will necessarily be a reason to stem the growing information flow provided by ever more sophisticated and powerful genetic tests, particularly when relatively trivial information is detected as part of a package of more serious information. Having said this, the law of tort may have some ability to control what becomes part of the standard of care in screening practices.⁶⁴ In the absence of public consultation and agreement about whether and how to limit these practices, it seems likely that ameliorating offense to people with impairments will best be achieved by the way in which screening and testing information is presented and discussed.

Ultimately, in reflecting on the possible offense that PND, selective abortion, and PGD may cause to those of us with impairments, we are left to ponder the significance of parental interests in this process and the legitimacy of parental reasons for wanting to avoid the birth of an impaired child. People (typically) choose to become parents and exist thanks to the various efforts of their parents. Although there are many senses in which children are a gift, there is also a sense in which life itself is a gift to the child. This is so even when, as is likely the case, reproduction is chosen as one way of enriching parental lives. Biologically, the giving of life happens through conception and gestation. In other senses, it happens through the way children are brought up and nurtured. If parents embark on this process at least partly to enrich their own lives, then at some level this enterprise will, understandably, be related to their conception of their lives. Metaphorically, as it were, we might say that there has to be some “give and take,” some degree of compromise on both parts, although the embryo or fetus is not in a position to agree to this. Assuming the parents have been fully counseled about the medical and social aspects of the birth of a child with a certain condition (which, as we know, may not currently be the case) they may still decide that, with the necessarily limited knowledge they now have, they wish to avoid a certain kind of potentially more difficult or distressing reproductive experience.

It is helpful here to flesh out some of the sympathetic thoughts of those writing from a disability perspective. For instance, Asch acknowledges that “[m]ost project members believe that people with significant disabilities can have lives they experience as rewarding but worry that life with a disabled child would be more difficult than life with a child without disabilities. On this view, parents could or should not be expected to envision the family life that included a child with a disability as equivalent to family life where no children had disabilities.”⁶⁵

In a similarly sympathetic vein, Tom Shakespeare observes:⁶⁶

(He also emphasizes the need “for better provision of welfare services and financial benefits to parents of disabled children, in order to make it easier for parents to choose to … continue such a pregnancy”.⁶⁷

) These observations point once again to parents' legitimate perception of their interests and limits.

A further strand of thought examining the legitimacy of parental reasons that I have not been able to explore here could focus on the degree of opportunity open to a child with cystic fibrosis, spina bifida, or Down's syndrome, particularly because there is at least some agreement that a negative feature of impairment may be that it restricts opportunities, despite all social support.⁶⁸

Barring those cases where, for instance, deaf parents seek a deaf child, it would, after all, be strange for a parent to hope for a child with health problems or limited opportunities,⁶⁹ however much the child may in fact successfully cope with these difficulties. Asch herself, in recognizing that impairments are not neutral, suggests that “[w]e can agree that our disabilities impose limitations we might sometimes wish were not there.” She notes: “Fortunately, everyone in our project affirms that much of disability is socially constructed; what has remained a contentious and painful divide has concerned just how much is ‘social’, how much is irremediable, and how negative for child, family, or society those irremediable facets of disability turn out to be.”⁷⁰ Further, the disvalue in constraint of opportunity was a point of extensive agreement among the Hastings Center working party that looked at these issues.⁷¹ It is in this sense that the language of “wrongful disability” with which midspectrum cases are often discussed—and which can be hard to reconcile with the views of disabled people themselves—may best be understood. Thus, one may respectfully argue that, overall, it is not undesirable if people with greater opportunities—including because of the inevitable and reasonable limits to social support where impairments exist—are born.⁷²

Finally, in connection with the expressivist objection, it is sometimes suggested that people with disabilities may really be harmed, rather than offended, by the practices of PND and selective abortion, and PGD.⁷³

To the extent that these practices may be fueled by or, in turn, fuel a predominantly medical model of disability, which may, in turn, be linked with issues of discrimination and possible loss of support, then it is fair to say that these practices have the potential to result in actual harm to people with disabilities. In terms of the current discussion, however, I have related these potentially real harms to my points about conflicting models of disability, issues of discrimination, information, and loss of support. That is, assuming these former concerns are acknowledged and addressed, we are left with the question of the potential messages that PND and associated practices may send. It is these that I have sought to address in relation to the expressivist objection. Although the sending of these messages, however they are interpreted, is unavoidable as long as these practices continue, how they are sent can be the focus of positive concern, for instance, by reflecting on the blandly underinformed and underinforming routinization of mainstream aspects of PND, such as those relating to Down's syndrome or spina bifida. This takes us back to the issue of the provision of information about disabilities discussed earlier.

A related point here, however, concerns who might receive these messages. It is sometimes suggested that people with disabilities can claim to be harmed by the dissemination of misleading assumptions about disability and suffering.⁷⁴

To the extent that this assumption may lead parents to abort certain fetuses, it is unclear how this actually harms already existing disabled people. Conversely, to the extent that such assumptions negatively affect how existing people with impairments are treated by third parties or the options open to them, then it would be meaningful to talk of them being harmed. In this way, messages relating to PND may be picked up by third parties whose attitudes and actions then impact on those now living with disabilities. Public education about disability beyond that which occurs in the context of PND is part of the solution here.