ON THE SUPPOSED MORAL HARM OF SELECTING FOR DEAFNESS ON THE SUPPOSED MORAL HARM OF SELECTING FOR DEAFNESSbioe_1752 128..136 MELISSA SEYMOUR FAHMY Keywords genetic selection, procreation, ethics, deafness, preimplantation genetic diagnosis ABSTRACT This paper demonstrates that accounting for the moral harm of selecting for deafness is not as simple or obvious as the widespread negative response from the hearing community would suggest. The central questions addressed by the paper are whether our moral disquiet with regard to selecting for deafness can be adequately defended, and if so, what this might entail. The paper considers several different strategies for accounting for the supposed moral harm of selecting for deafness and concludes that the deaf case cannot be treated in isolation. Accounting for the moral harm of selecting for deafness necessarily entails moral implications for other cases of procreation and procreative decision-making, including unassisted coital reproduction. The lesson to be learned from the deaf case is that we need norms that govern not just the use of reproductive technology, but procreation and procreative decision-making in all of its various forms. We could be said to live in an age of unprecedented reproductive opportunity. The success of the Human Genome Project combined with reproductive technolo- gies like in vitro fertilization (IVF) and preimplantation genetic diagnosis (PGD) make possible procreative choices unimaginable in the past. These developments in science and technology have introduced the possibility for new kinds of reproductive decision-making. Potential reproducers can select in favor of a desirable genetic trait. For instance, parents with three sons might select in favor of a daughter. The same technologies can be utilized to select out or against undesirable genes, such as those responsible for diseases like Tay-Sachs or cystic fibrosis. This paper will closely consider the ethics of one contro- versial case of procreative selection: selecting for genetic deafness. Deaf couples who regard deafness as a distinctive culture rather than a disability may have a strong desire to parent deaf children. If the desire is strong enough, these couples may seek to utilize genetic counseling ser- vices and reproductive technologies to help them inten- tionally reproduce a deaf child rather than leave the matter to reproductive chance. The response from the hearing community to this unusual procreative prefer- ence has been largely one of disbelief, moral disquiet, and in many cases outrage and condemnation. Why would anyone want to ensure that her child is deaf ? The deaf case challenges the limits of procreative liberty and the ethic of nondirective genetic counseling. In a time when we are just beginning to consider the prospect of selecting our children on the basis of genetic features, and not without some considerable degree of reservation, the desire to select for a deaf child is likely to be altogether alien to most of us. However, if we are to condemn the decision to reproduce intentionally a deaf child, if we are to suggest that such a selection lies outside the boundaries of the reasonable exercise of procreative liberty, and if we are to refuse genetic counseling and other services to deaf couples with such intentions, then we must account for the moral harm of deliberately reproducing a deaf child. Address for correspondence: Melissa Seymour Fahmy, University of Georgia – Philosophy Dept., 107 Peabody Hall, Athens, Georgia 30602, United States. Email: meseymou@uga.edu Bioethics ISSN 0269-9702 (print); 1467-8519 (online) doi:10.1111/j.1467-8519.2009.01752.x Volume 25 Number 3 2011 pp 128–136 © 2009 Blackwell Publishing Ltd., 9600 Garsington Road, Oxford OX4 2DQ, UK and 350 Main Street, Malden, MA 02148, USA. Todd Highlight The central questions this paper will address are whether our moral disquiet with regard to selecting for deafness can be adequately defended, and if so, what this might entail. I will proceed by evaluating several different ways of accounting for the supposed moral wrongness of selecting for deafness. My aim in this paper is neither to defend the rights of deaf reproducers nor to vindicate the moral disquiet of the hearing community, but rather to utilize this controversial case as an opportunity to glean some general insights into the ethics of procreation. What we shall discover, upon closer examination, is that we cannot treat the deaf case as an isolated case. Accounting for the moral harm of selecting for deafness necessarily entails moral implications for other cases of procreation and procreative decision-making, including unassisted coital reproduction. 1. HARM TO THE CHILD The first thing to note is that the ordinary account of harm will not be useful in the deaf case. That is to say, if deliberately selecting for deafness constitutes a moral harm, it cannot be accounted for in terms of some harm done to the particular child that comes into being as a result of the selection. As many authors have acknowl- edged, the child in question is not injured or made worse off by the selection or resulting birth, given that the only alternative for the child would be not to exist at all.1 This is an important difference between genetic selection and genetic manipulation. In cases of selection, the resulting child has not been made deaf, or designed to be deaf; rather, a particular gamete or embryo has been chosen in virtue of its possessing the genetic marker for deafness. As Julian Savulescu puts it, ‘The deaf child is harmed by being selected to exist only if his or her life is so bad it is not worth living.’2 Cases where a life is so bad that it is not worth living are quite rare, and the life of a deaf person is not one of these cases. 2. THE CHILD’S RIGHT TO AN OPEN FUTURE Dena Davis has proposed an alternative analysis of the supposed moral harm of selecting for deafness. According to Davis, ‘deliberately creating a deaf child counts as a moral harm, because it so dramatically curtails the child’s right to an open future.’3 A child’s right to an open future is the term coined by Joel Feinberg to refer to the collection of ‘anticipatory autonomy rights’ or ‘rights-in-trust’ pos- sessed by children. A right-in-trust is a right which cannot be exercised by a child, but is saved for the child until he or she is an adult. Though the right cannot be exercised as such, it nonetheless can be violated in advance by an adult. ‘The violating conduct,’ Feinberg explains, ‘guarantees now that when the child is an autonomous adult, certain key options will already be closed to him.’4 For example, while a 6-year-old possesses neither the capacity nor the right to procreate, his or her ability to exercise this autonomy right in the future can be seriously compro- mised before adulthood is reached. An adult who has been sterilized in childhood will not be able to exercise (or elect not to exercise) her right to procreate. Sterilization thus constitutes a violation a child’s right to an open future.5 Davis maintains that selecting for deafness similarly violate a child’s right to an open future. According to Davis, the decision to select for deafness violates a child’s right to an open future insofar as it ‘confines her forever to a narrow group of people and a limited choice of careers.’6 I think we must take issue with the notion that a decision to select for deafness constitutes a violation of the child’s right to an open future. That this charge is 1 This simple but provocative fact has been acknowledged and explored by many authors. See D. Parfit. 1984. Reasons and Person. Oxford: Oxford University Press; B. Steinbock & R. McClamrock. When Is Birth Unfair to the Child? Hastings Cent Rep 1994; 24: 15–21; D. Brock. The Non-Identity Problem and Genetic Harms. Bioethics 1995; 9: 269– 275; and D. Davis. 2001. Genetic Dilemmas: Reproductive Technology, Parental Choices, and Children’s Futures. New York: Routledge. 2 J. Savulescu. Deaf Lesbians, Designer Disability, and the Future of Medicine. Br Med J 2002; 325: 772. 3 D. Davis. 2001. Genetic Dilemmas: Reproductive Technology, Parental Choices, and Children’s Futures. New York: Routledge: 64. 4 J. Feinberg. 1980. The Child’s Right to an Open Future. In Whose Child? Children’s Rights, Parental Authority, and State Power. W. Aiken & H. LaFollette, eds. Totowa, N.J.: Littlefield, Adams, & Co.: 126. 5 I am borrowing this example from Dena Davis. See Davis, Genetic Dilemmas, 24. 6 D. Davis. 2001. Genetic Dilemmas: Reproductive Technology, Parental Choices, and Children’s Futures. New York: Routledge: 65 (emphasis mine). See also D. Davis. Genetic Dilemmas and the Child’s Right to an Open Future. Hastings Cent Rep 1997; 27: 7–15. Davis’s assessment invites two interesting and important questions which I do not intend to pursue in this paper. The first concerns the extent to which a deaf child will experience fewer future options than a hearing child. Ascertaining the kinds of personal and professional options that will be available to an adult who was born deaf will depend on a myriad of factors including educational opportunities, technological developments, and social con- ditions, and thus requires empirical analysis well beyond the scope of this paper. The second question concerns how restrictive an action or decision need be before it can be considered a violation of a child’s right to an open a future. My critique of Davis’s charge does not depend on suitably answering either of these questions. On the Supposed Moral Harm of Selecting for Deafness 129 © 2009 Blackwell Publishing Ltd. Todd Highlight Todd Highlight untenable is perhaps best demonstrated by comparing the case of selecting for deafness with the decision made by Amish parents to end the formal education of their chil- dren after the eighth grade, a decision which Davis takes to be an example of a failure to respect the child’s right to an open future.7 In the 1960s Amish parents in Wisconsin sought exemp- tion from a state law mandating school attendance for all children under the age of 16. The Amish maintained that exemption was necessary for the free exercise of their religious beliefs which are deeply intertwined with a par- ticular way of life. Education beyond the eighth grade is unnecessary to prepare an Amish child for a life in the Amish community and is likely to be antithetical to this end. Ending a child’s formal education after the eighth grade, however, woefully under-prepares a child for life outside of the Amish community and thus invites the charge that the child’s right to an open future has been violated. What I wish to draw attention to is the direct causal connection between the parental decision to end a child’s formal education and the narrowing of the child’s future options, thus rendering some options ‘practically impos- sible.’ Had the Amish children remained in school, more options (educational, professional, social, economic, etc.) would have been available to them upon reaching adult- hood and assuming their autonomy rights. Because a wider future was possible for these children prior to the parental decision, the decision can be said to render their future less open than it would have otherwise been. The same cannot be said with regard to selecting for deafness. The decision that purportedly curtails the child’s right to an open future is simultaneously the deci- sion which allows the child to exist and to have any future whatsoever. In the absence of gene therapy, there is no possible future in which the child in question could exist without also being deaf. The decision to select for deaf- ness thus, unlike the Amish case and the sterilization case, cannot be said to deprive the resulting child of opportu- nities he or she would have otherwise been able to pursue. Contrary to Davis’s analysis, the parents who select for deafness do not constrain the ability of their children to make a wide variety of choices; rather, they elect to give birth to a child with impaired abilities that may entail more limited future options.8 The difference is subtle but significant. Because the decision to select for deafness does not impose constraints on the child’s ability to exer- cise autonomy rights in the future, the decision cannot be said to violate that child’s right to an open future. The analysis of the supposed moral harm of selecting for deafness which appeals to a child’s right to an open future encounters the same difficulties as the harm analy- sis discussed above. This is not surprising if we under- stand a rights violation to be a kind of harm. While the right to an open future cannot ground a moral objection to the decision to select in favor of deaf- ness, it does appear to be applicable to the parental decision not to fit a deaf child with a cochlear implant. Respecting a child’s rights-in-trust requires significantly more than not interfering with the child’s normal devel- opment. Respecting a child’s right to an open future also entails substantial positive requirements to provide the child with the care, education, and discipline necessary to enable the child to exercise meaningfully his or her autonomy rights in the future.9 If fitting a child at an early age with a cochlear implant significantly improves his or her ability to acquire speech skills and to participate more widely in the larger hearing culture, then a strong case can be made for stipulating that parents have an obligation to seek out this treatment for a deaf child. An implant could allow the child, when an adult, to make a meaningful choice to live in the Deaf community, in the hearing community, or biculturally in both worlds.10 The implications of the right to an open future argu- ment for parents of (existing) deaf children merit men- tioning insofar as there is a potential to think that acknowledging a responsibility to seek treatment for a deaf child via cochlear implant decides the issue with regard to the decision to select for deafness. If parents have a moral obligation to provide their deaf child with this device, then it might appear that the decision to select for deafness is self-defeating. I think it is a mistake to draw this conclusion. A deaf child with a cochlear implant is still a deaf child. That is to say, a genetically deaf child with a cochlear implant still shares deafness in common with her parents; she will have experiences of 7 See D. Davis. 2001: 25–32 and 1997: 9–10. 8 The kinds of opportunities that will be available to the child when she is an adult will depend largely on the parental decisions made after the child’s birth, decisions regarding the child’s education and whether or not to seek out medical interventions. These kinds of decisions might legitimately violate the child’s right to an open future. The point I wish to make, however, is that selection per se is not confining. 9 This is one of the ways that respecting a child’s right to an open future differs from respecting an adult’s autonomy rights. 10 The advantages and disadvantages of cochlear implants raise a number of interesting and important questions that are well beyond the scope of this paper. This is why I have chosen to phrase the position in hypothetical terms. If providing deaf children with cochlear implants allows them opportunities that translate into a significantly more open future, then, in virtue of a child’s right to an open future, there is reason to think that parents have an obligation to seek this treatment for their deaf children. 130 Melissa Seymour Fahmy © 2009 Blackwell Publishing Ltd. Todd Highlight deafness that no hearing child has, and when she is an adult, she can choose not to use the implant and live the Deaf lifestyle exclusively. Acknowledging an obligation to outfit a deaf child with a cochlear implant may dissuade some deaf couples from seeking to reproduce deaf children or from repro- ducing at all. Acknowledging an obligation of this kind may also pose a significant threat to Deaf culture, analo- gous to the way that mandatory education laws pose a threat to traditional Amish culture. However, acknowl- edging an obligation of this kind does not establish that selecting in favor of deafness is prima facie morally wrong. The failure of the harm analysis and the right to an open future analysis to account for the supposed moral wrongness of selecting for deafness suggests a need to reframe the locus of moral evaluation. There are at least two additional avenues to pursue. One could frame the moral evaluation in terms of the state of affairs that ensue from the decision to select for deafness. Alternatively, one could frame the moral evaluation in terms that assess the character of the individuals who desire to make this kind of procreative selection. I will consider both of these alternatives in the following sections. 3. THE INTRODUCTION OF AVOIDABLE SUFFERING AND/OR LIMITED OPPORTUNITY One way to avoid the difficulties encountered by the pre- viously considered analyses is to locate the moral harm in selecting for deafness more generally in the ensuing state of affairs rather than in some injury done to a particular individual. A state of affairs analysis of the supposed moral harm maintains that the decision to select for deaf- ness is morally problematic insofar as the decision brings about some harm, such as limited opportunity, which could have been avoided by selecting a different child with normal abilities.11 According to this analysis, it is morally good to prevent the avoidable harm, but prevent- ing the harm cannot be said to be done for the sake of the child who would experience it. This is because the harm can be avoided only by preventing the existence of the impaired child. This is the kind of analysis that Dan Brock suggests can explain cases of wrongful disability – cases where the harm of a disability can be prevented only by preventing the existence of the particular disabled individual.12 A state of affairs analysis of the supposed moral harm does not fail in the way that the previously considered analyses do, which is to say that I think it offers at least a plausible account of the supposed moral wrong in select- ing for deafness. A state of affairs analysis, however, has implications for an ethics of procreation that extend well beyond the deaf case. If selecting for deafness constitutes a moral harm, insofar as it brings about some undesirable state of affairs that could have been avoided, then it would seem to be the case that, in addition to an obliga- tion not to pursue the undesirable state of affairs as an end, we must also acknowledge an obligation to avoid unintentionally bringing about the same state of affairs. This is typical of the common understanding of obliga- tions of nonmaleficence. While directly and intentionally generating some harm may be the more egregious wrong, failing to prevent foreseeable harm is far from innocent. Taking reasonable precaution to prevent foreseeable harm is thus thought to be among an agent’s moral responsibilities. Consider the case Brock describes of a woman who is told by her physician that she should not attempt to become pregnant at present because she has a condition that, while fully treatable, would likely result in mild retardation in her child if she were to conceive prior to completing the one month treatment. The woman, impa- tient and unwilling to postpone pregnancy, disregards her physician’s warning and gives birth to a mildly retarded child.13 The case is vexing for the reasons articulated in the previous sections. Mental retardation is not so bad that it renders a life not worth living, and the only way to prevent this impairment would be to prevent the existence of the particular child with the impairment. Thus it is not the case that it would have been better for the child in question, had the mother postponed pregnancy. While the mother’s actions certainly appear blameworthy, their wrongness cannot be explained in terms of some harm done to her child. Brock suggests that we can account for the morally troubling nature of the mother’s action by appealing to a non-person-affecting principle of harm prevention.14 The woman in the example acts wrongly, not because she 11 A state of affairs analysis need not claim that deafness itself is a harm. The analysis can acknowledge that the harm of limited opportunity is the product of both the limited sensory abilities of the deaf person and the resources available to the deaf person within a particular society. 12 D. Brock. The Non-Identity Problem and Genetic Harms. Bioethics 1995; 9. See also A. Buchanan, D. Brock, N. Daniels & D. Wikler. 2000. From Chance to Choice: Genetics and Justice. Cambridge: Cambridge University Press: 204–257. 13 See Brock. 1995: 270; and A. Buchanan et al. 2000: 244. 14 See Brock, op. cit. note 13, p. 249 for a more complete account of the principle he proposes. On the Supposed Moral Harm of Selecting for Deafness 131 © 2009 Blackwell Publishing Ltd. Todd Highlight Todd Highlight harms her child, but rather, because she fails to prevent harms (the harms of limited opportunity and suffering which ensue from mild retardation) that could have been avoided without incurring substantial burdens or costs. The fact that she did not intend to create a mildly retarded child does not absolve her from moral culpability. What does this mean for the case we are considering? If selecting for deafness constitutes a moral wrong insofar as it brings about some harm that could have been avoided (via the substitution of a different child), then there is reason to think that agents are obliged to avoid creating a deaf child, even unintentionally. Individuals who have a family history of deafness would have to make use of genetic screening and other technologies in order to ensure that any child they produce does not experience suffering or limited opportunity that is ‘avoid- able by substitution.’ Of course, this conclusion is by no means limited to genetic deafness. What is relevant to the moral evaluation we are considering is not deafness per se, but rather the fact that deafness results in limited opportunity for the child. Other genetic anomalies that entail comparable or more severe forms of suffering or limited opportunity would also engender a similar obligation to prevent the existence of persons with these anomalies. Here we are confronted with a difficult threshold question. How much anticipated suffering and/or limited opportunity is enough to suggest a moral obligation to avoid this harm by substituting one potential child for another, or by forgoing procreation altogether?15 I will not pursue this question here. My aim in this paper is far more modest. My intention is simply to draw out what would follow from an analysis of selecting for deafness that accounts for the supposed moral wrongness of this selection in terms of the introduction of avoidable harm. The idea that we may be obliged to avoid procreation where there is a chance of passing on some genetic con- dition is not new. Laura Purdy has argued for an obliga- tion to avoid reproduction if there is a nontrivial chance of passing on a genetic condition which is incompatible with a minimally satisfying life.16 The conditions Purdy has in mind include Tay-Sachs disease and Huntington’s disease. In focusing on the notion of a ‘minimally satis- fying life’ Purdy sets the threshold rather low. Her argu- ment would not ground on obligation to prevent the existence of deaf persons, insofar as we agree that deaf- ness does not preclude living a minimally satisfying life. It’s worth noting that the deaf case would set the thresh- old quite high. If deafness entails sufficient limited oppor- tunity to engender an obligation to prevent it, then we may have to acknowledge comparable obligations to prevent the existence of persons with Down syndrome, cystic fibrosis, cerebral palsy, etc. This list would only expand as our knowledge of human genetics increases. Of course, the harm to be avoided must be weighed against the costs and burdens such avoidance would require. In the case that Brock considers, the woman could have avoided the harm of mild retardation by simply postponing pregnancy for a month. Preventing the existence of persons with genetic diseases and impair- ments, however, is rarely so simple. The options open to potential parents – IVF and PGD, prenatal screening and selective abortion, gamete donors, and adoption – all entail potentially significant physical, financial, and emo- tional burdens. Notably, the burden of being denied the opportunity to select one’s child on the basis of genetic features is rather trivial when compared with the more significant burdens entailed in actively endeavoring to prevent the existence of any impaired child. This reinforces the notion that the obligation to refrain from deliberately pursuing the birth of an impaired child (if there is such an obligation) is more stringent than the obligation to prevent the birth of any such child. The point I wish to make here is that a state of affairs analysis of the supposed moral wrongness of selecting for deafness cannot ground an obligation of the first kind without also committing us to some obliga- tion of the second kind. Making sense of these obliga- tions will require answering the difficult threshold question I noted earlier, as well as determining the kinds of burdens that can be reasonably imposed on prospec- tive parents. An alternative approach to accounting for the sup- posed moral harm of selecting for deafness is open to those who find the state of affairs analysis troubling for one reason or another. This alternative locates the wrong- making feature in some aspect of the character of the decision-maker, rather than in some harm that results from the selection. I will consider several different ver- sions of this approach in the remaining sections of the paper. 4. PARENTAL & CIVIC RESPONSIBILITY Bonnie Steinbock and Ron McClamrock have pro- posed a principle of parental responsibility to account for cases where, even though the child’s life is not so bad that nonexistence would be preferable, the decision to 15 Forgoing procreation need only entail forgoing children biologically related to oneself, not forgoing parenthood or childrearing. 16 L. Purdy. 1996. Reproducing Persons: Issues in Feminist Bioethics. Ithaca: Cornell University Press: 39–49. 132 Melissa Seymour Fahmy © 2009 Blackwell Publishing Ltd. Todd Highlight procreate nonetheless appears to be unfair to the child. For instance, most teenagers lack the necessary resources, skills, and maturity to provide their children with mini- mally decent parenting. A teenager, who elects nonethe- less to have a baby, elects to create a child under conditions that are adverse to its well-being. Convinced that the wrong-making feature in such cases cannot be given in terms of harm done to the resulting child, and unsatisfied by the state of affairs analysis, Steinbock and McClamrock suggest that a principle of parental respon- sibility provides us with a more appropriate moral critique. The principle of parental responsibility claims ‘that prospective parents are morally obligated to consider the kinds of lives their offspring are likely to have, and to refrain from having children if their lives will be suffi- ciently awful.’17 The standard set by the principle is minimal. Individuals are obliged to avoid procreation only in cases where the potential child is not likely to have ‘a decent chance at a happy life.’ The principle insists ‘only that it is wrong to bring children into the world when there is good reason to think that their lives will be terrible. It does not suggest that people should not have children unless conditions are ideal, still less that only conventional childrearing circumstances are morally permissible.’18 Steinbock and McClamrock’s principle of parental responsibility, while defensible in its own right, does not appear to be of much help to us in resolving the question of selecting for deafness. Deafness is not so bad that it renders a life awful, terrible, or unhappy. Furthermore, it is significant that the parents we are considering in the deaf case are selecting for a child who shares a condition with them. Deaf parents, especially those born deaf, are in a position to judge well the life prospects for their potential children. The term irresponsible does not seem an accurate description of the decision to select for deafness. Given that genetic selection of this kind will likely require sig- nificant assistance from others and that selection of this kind is likely to be met with at least some resistance, it follows that selecting for deafness cannot be pursued casually or impulsively. This kind of procreation stands in sharp contrast to the not uncommon case of unplanned and accidental pregnancies, as well as the case Brock describes where a woman gives birth to a mildly retarded child because she refuses to postpone pregnancy for the duration of her medical treatment. But perhaps there is a better way to describe what is problematic about the decision to select in favor of deaf- ness. It might be said that such a decision is objectionable in virtue of what it expresses, namely too little regard for the good that may be described as (for lack of a better description) the normal functioning of human capacities, which include hearing. I think this is a promising alterna- tive, though at present I am unconvinced that it is substan- tive enough to ground moral condemnation. It should be noted, however, that the same critique might also be applied to those who are aware of their risk of transmitting a debilitating condition to the next generation and yet fail to take precautions to prevent transmission. Before moving on to examine more demanding paren- tal ideals, I’d like to consider a different sense in which the decision to select for deafness might be thought to be irresponsible. One could argue that it is irresponsible to deliberately create a child who will require significantly greater public assistance in order to pursue normal devel- opment and a happy and meaningful life. The kind of responsibility I have in mind here might be called civic responsibility. According to some reports, educating a deaf child currently costs the public close to three times what it costs to educate a hearing child.19 Those who deliberately select in favor of deafness and then make use of publicly funded special facilities and services could be accused of exploiting public resources that were not designed for the purpose of accommodating unique pro- creative preferences. One response to this charge insists that the cost of educating a deaf child must be weighed against the child’s unique social contribution. According to deaf mother Sharon Duchesneau, deaf children make society more diverse, and this diversity in turn renders a society more humane.20 Even if we grant the premise that diversity does render a society more humane, it is unclear how this benefit compares to the additional burden placed on public resources. Furthermore, those who are inclined to sympathize with the impaired may take an entirely differ- ent view toward impairment that is deliberately pursued rather than accidental. The civic responsibility analysis of the supposed moral harm of selecting for deafness has implications similar to those that follow from the introduction of avoidable harm analysis. If deliberately selecting for a deaf child constitutes a failure of civic responsibility, then this sug- gests that civic responsibility may also require us to avoid 17 Steinbock & McClamrock. When is Birth Unfair to the Child? Hast- ings Cent Rep 1994; 24: 19. 18 Ibid: 20. 19 B.P. Tucker. Deaf Culture, Cochlear Implants, and Elective Disabil- ity. Hastings Cent Rep 1998; 28: 10. 20 L. Mundy. 2002. A World of Their Own. The Washington Post 31 March. On the Supposed Moral Harm of Selecting for Deafness 133 © 2009 Blackwell Publishing Ltd. Todd Highlight Todd Highlight the birth of persons with impairments that require sub- stantial public assistance. As we noted earlier, there is reason to think that the obligation not to deliberately pursue an end may be more stringent than an obligation to avoid the same end, especially when the costs of pre- vention are taken into consideration. If the costs of pre- vention were minimal, however, and right now they are not, then I believe that the civic responsibility account of the moral harm of selecting for deafness would strongly suggest an obligation to avoid the birth of impaired children. 5. PARENTAL VIRTUES: OPENNESS TO THE UNBIDDEN AND UNCONDITIONAL PARENTAL LOVE Another way of accounting for the supposed moral wrongness of selecting for deafness is to argue that the selecting agents exhibit attitudes and dispositions that are hostile to certain parental ideals or virtues. In this section, I will consider two parental virtues that might be said to be lacking in an agent who selects in favor of deafness: openness to the unbidden and unconditional love. Openness to the unbidden Michael Sandel has recently raised objections to an emerging new eugenics which, he contends, threatens to replace an ethic of giftedness with an ethic of mastery. According to Sandel, . . . parenthood, more than other human relationships, teaches what the theologian William F. May calls an ‘openness to the unbidden.’ May’s resonant phrase helps us see that the deepest moral objection to enhancement lies less in the perfection it seeks than in the human disposition it expresses and promotes . . . Even if this disposition did not make parents tyrants to their children, it would disfigure the relation between parent and child, and deprive the parent of the humility and enlarged human sympathies that an openness to the unbidden can cultivate.21 William F. May maintains that parenthood teaches open- ness to the unbidden. This seems right. The virtues of parenthood, whatever they may be, are likely to be acquired through practice. Just as the warrior not only demonstrates but learns courage on the battlefield, the parent cultivates openness through her experiences with the unbidden qualities of her child. The virtue of open- ness thus should not be thought of as a qualification for parenthood but, rather, as a moral good that one, ideally, gains by the experience. To make the case against genetic selection, what needs to be shown is that the practice of selection does, as Sandel suggests, pose a special threat to the parent-child relationship or to the cultivation of the parental virtue of openness to the unbidden. This is not easily demonstrated. Parental hubris does not depend on biotechnology. Inap- propriate parental expectations, expectations hostile to the virtue of openness, are not new. One can presume to know more about one’s child than is appropriate without actively selecting genetic traits. Biological parents, for instance, know that their children share their genes and this alone may be sufficient to encourage inappropriate assumptions and expectations. Parental hubris might lead one to think that because he is MY son, he is going to be a great athlete or attend Yale. Even if we did select our children’s genetic traits, there would still be every reason to think that parent- hood teaches openness to the unbidden. This is because children are so much more than their genetic features. Only the most naïve parents would presume to know what they are getting simply because they had a hand in selecting some of their child’s genetic features; and a naïve parent would receive a lesson in humility soon enough. Parenthood might still be a school for humility, perhaps even more so. Thus we can agree with Sandel that openness to the unbidden is a disposition worth affirming, without concluding that the practice of genetic selection deprives the parent of an opportunity to cultivate this virtue. One might argue that while the selecting agent may well develop the virtue we’re calling openness to the unbidden, she is, in fact, less open to the kind of child she creates than the agent who does not select. This is certainly true. The challenge, however, is to articulate what is morally problematic about being less than com- pletely open in this way. Here we risk confusing open- ness as a parental virtue with openness as a procreative virtue. As a parental virtue, it is fairly easy to see how openness to the unbidden will be of value both for the child’s sake and for the sake of the parent-child rela- tionship. It is unclear whether openness to the unbidden in procreation is itself a virtue or whether there is reason to think that a parent who is less open about the kind of child she creates will be less open in relation to the child she does create. 21 M. Sandel. The Case against Perfection: What’s Wrong with Designer Children, Bionic Athletes, and Genetic Engineering. Atlantic Monthly 2004: 56 [emphasis mine]. See also M. Sandel. 2007. The Case Against Perfection. Cambridge: Belknap Press: 45–46. 134 Melissa Seymour Fahmy © 2009 Blackwell Publishing Ltd. Unconditional parental love A related concern is that genetic selection is inconsistent with the ideal of unconditional parental love. This ideal maintains that parents should love their children, and act lovingly toward them, simply because the child is their child. This is to say, parental love should not be contin- gent on the child’s particular genetic features, abilities, physical appearance, performance, etc. The parental love objection maintains that ‘setting conditions on which child to create amounts to setting conditions on our love for whatever child we get, for it sets conditions on which child will receive that love.’22 This objection takes issue with most cases of selection both in favor of and against particular genetic features. Like Sandel’s critique, the parental love objection has a much broader target than the case of selecting for deafness. The ideal of unconditional parental love depends on there being some existing child or potential child to receive that love. Unconditional love is not an attitude or feeling one could have toward the entire class of one’s potential progeny. This suggests that unconditional love, unlike openness to the unbidden, is not a virtue that can be expressed in the decision to select or not to select.23 So the objection cannot be that potential parents fail to embody this ideal when they make the decision to select for or against a particular genetic trait. In order to make its case against selection, what the parental love objection must establish is that the practice of selection somehow makes it less likely that the resulting child will be an object of unconditional love. I believe that the strongest case for this position can be made by arguing that the process of selection encourages parental expectations which could lead to disappoint- ment in the future. Genetic selection, at least at present, requires potential procreators to undergo procedures that are costly, time-consuming, and invasive. Because of their investment, selecting parents may feel cheated or disap- pointed if the child they create is not the child they intended to create. These negative feelings may then con- stitute an impediment to unconditional parental love. The randomness of unselective procreation insulates parents from these particular affective impediments, whereas selecting parents put themselves at risk. Parents may also feel disappointed if their child does not fulfill expectations indirectly associated with genetic selection. For instance, a deaf parent who engages in genetic selec- tion may strongly desire that her child live as a member of the Deaf community. Expectations of this nature might also constitute an impediment to unconditional parental love. Two things should be noted here. First, the connection sketched above is only a speculative one, not a necessary one. Selecting parents may very well love their children unconditionally even if they bear little or no resemblance to the children they intended to create. Second, that selec- tion potentially endangers the ideal of unconditional love does not by itself establish that selection is morally rep- rehensible. This is due to the fact that the connection is an uncertain one, and because what we risk by selecting must be balanced against what we gain, as well as what is risked by not selecting. For these reasons, I believe that the parental love objection is too weak to provide an adequate account of supposed moral harm of selecting for deafness. CONCLUSION I have endeavored to demonstrate that accounting for the moral harm of selecting for deafness is not as simple as the widespread negative response from the hearing com- munity would suggest. My interest in exploring this topic is not to vindicate the decision to select for deafness, but rather to uncover some general conclusions about how we ought to think about the ethics of procreation. The first lesson to be learned from the deaf case is that, in an age of unprecedented reproductive opportunity, we need norms that govern not just the use of reproductive tech- nology but procreation and procreative decision-making in all of its various forms. Identifying such norms will be challenging; and the biggest challenge may well be over- coming our bias toward unassisted coital reproduction. If selecting for deafness is morally reprehensible because it introduces some preventable harm or places undue finan- cial burdens on the public, then we must evaluate unse- lective coital reproduction by the same standard. If selecting for deafness is morally reprehensible because it violates a principle of parental openness, then selecting against disease states that are compatible with a life worth living must be condemned on the same grounds. While there may be many good reasons for not impos- ing external restrictions on coital reproduction, good reasons for privileging this method of procreation in ethical analysis are much harder to come by, and will be harder still to come by as different forms of intervention become less costly and more accessible. We should also bear in mind that the norms of parenthood may be poor candidates for the norms which govern procreation. As we have seen, sometimes the norms of parenthood fit 22 J. Davis. Selecting Potential Children and Unconditional Parental Love. Bioethics 2008; 22: 260–261. 23 I am assuming here that a fertilized egg is not yet a child, but once implanted, will become a child some time prior to birth. On the Supposed Moral Harm of Selecting for Deafness 135 © 2009 Blackwell Publishing Ltd. rather awkwardly when applied to procreative decisions (e.g. openness to the unbidden), and sometimes they do not fit at all (e.g. unconditional parental love, respecting the child’s right to an open future). The second lesson to be learned from the deaf case is that parental decisions made post-implantation and post- birth are far more important and potentially problematic than selection decisions. This is true in the deaf case, as well as in cases of selecting for a particular sex, or so-called beneficent selection.24 Post-implantation deci- sions can directly harm or benefit the child, as well as expand or confine her future, in ways that selection cannot. Decisions made post-birth also have a far greater potential for developing and expressing parental virtues or vices. The challenge here will be to prevent the ethics of procreation, striking in its novelty, from overshadowing the ethics of parenthood. Acknowledgements The author is grateful to the Poynter Center for the Study of Ethics and American Institutions at Indiana University for the opportunity to participate in an interdisciplinary seminar on the ethics and politics of childhood in 2004–5, to the seminar participants for inspiring this paper, and to Daniel Farnham, René Jagnow, Piers Stephens, and Sarah Wright for their comments on an earlier draft of the paper. Melissa Seymour Fahmy is assistant professor of philosophy at the University of Georgia. Her research interests include Kantian ethics, moral psychology, and various topics in bioethics. 24 See J. Savulescu. Procreative Beneficence: Why We Should Select the Best Children. Bioethics 2001; 15: 413–426; and J. Davis. Selecting Potential Children and Unconditional Parental Love. Bioethics 2008; 22: 258–268. 136 Melissa Seymour Fahmy © 2009 Blackwell Publishing Ltd.