Is it ever morally permissible to select for deafness in one’s child?

One objection to selecting for deafness claims that, in choosing deafness for one’s child, one harms the child in an important way. Selecting a deaf embryo is a harm because the future child will lack one of the central human sense modalities. This harm constitutes sufficient reason to deem selecting for deafness morally impermissible, as parents should not intentionally harm their children if they have reasonable alternatives (e.g., the other nondeaf embryos). Setting aside the fact that the argument from direct harm also begs the question, it has at least one simple dismissal: “[a]s many authors have acknowledged,” summarizes Melissa Seymour Fahmy (2011, p. 129), “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.” This sort of reply, which we will see again in “Restricting future life plans”, is usually attributed to Derek Parfit and is known as the non-identity problem.¹⁰

Julian Savulescu and Guy Kahane (2009, p. 276) argue that, in considering direct harm to the child, it would be morally impermissible to select a child only if its life “would be so bad it is not worth living.” And clearly, they state, “[t]he lives of the vast majority of disabled people are not merely worth living but good.”¹¹ In the case of deafness, the testimony of the Deaf community,¹² the existence of the Deaf Pride movement,¹³ much scholarship,¹⁴ and one might argue common sense, all support that the life of a deaf person is indeed worth living. So, it cannot be the case that, in selecting for deafness, one harms the child in this substantial sense. But, Savulescu and Kahane seem to have set what Joseph Stramondo (2017, p. 482) calls “an incredibly low bar” here, as “the non-identity problem would find any choice acceptable so long as the resulting life is not so burdened by suffering that it is not worth living.”

Another way to respond to the harming-the-child objection is to show that it might be possible that it is actually a good thing to be deaf. Parents who select for deafness are not doing serious harm to their child because being deaf actually accrues benefits and goods, not harm. Rachel Cooper (2007) explores this in “Can it be a good thing to be deaf?”. Cooper gives reasons why being deaf might be a good thing, categorized under language, qualia, and culture; I will briefly mention these and a few others.

First, signed languages are now recognized as full natural languages (Sacks 1991, p. 90). Any language can have advantages and disadvantages with respect to other languages, Cooper asserts, which suggests signed languages have some advantages over spoken languages. One example could be the “unique, additional powers [of Sign] of a spatial and cinematic sort—at once a most complex and yet transparent expression and transformation of thought” (Sacks 1991, p. 90). There are likely some unique advantages of signed languages which only accrue to those for whom Sign is their first and primary language.

In terms of sense perception, deaf people can have enhanced visual and vibrational qualia experiences. A deaf child can be referred to (quite descriptively, note Grodin and Lane) as a “visual child” (Grodin and Lane 1997). Deaf people are “visual people” with specially developed visual abilities.¹⁵ Further, “if the primary language is Sign,” writes Sacks (1991, p. 111), summarizing findings in neurology, “there will be, additionally, an enhancement of many sorts of visual-cognitive ability, all going along with a shift from right hemisphere to left hemisphere dominance.” Considering enhanced vibrational qualia, Sacks (1991, p. 8n) writes: “those with the profoundest deafness […] may be highly sensitive to vibrations of all kinds. This sensitivity to vibration can become a sort of accessory sense: thus Lucy K., although profoundly deaf, can immediately judge a chord as a ‘fifth’ by placing a hand on the piano and can interpret voices on highly amplified telephones; in both cases what she seems to perceive are vibrations, not sounds.”

Cooper notes that having more qualia is not always better than having fewer; overload and confusion are possible. I came across a great illustration of this in a recent New York Times obituary for Kitty O’Neill, “Stuntwoman and Speed Racer” (Sandomir 2018). The columnist writes, “[b]eing deaf, [O’Neill] often said, helped deepen her concentration, whether she was racing a dragster or leaping off buildings.” O’Neill still holds the land-speed record for women; in December 1976 she rode a “three-wheeled rocket-powered vehicle” across the desert in Oregon, peaking at 618 m.p.h. and attaining “an average speed of 512.7 m.p.h., shattering the land-speed record for women by about 200 m.p.h.” O’Neill’s testimony suggests that lacking sound qualia enhanced her ability to perform stunts and pursue her daring career.

In terms of culture, giving a single evaluation of the importance (and limitations) of Deaf culture would be impossible. Certainly, many Deaf people report valuing Deaf culture very highly (Grodin and Lane 1997). In Seeing Voices Oliver Sacks (1991, p. 114n) reports another cultural-linguistic advantage of deafness: “[t]here is no one universal signed language. And yet there may be universals in signed languages, which help to make it possible for their users to understand one another far more quickly than users of unrelated spoken languages could understand each other.” Signers thus have an advantage over speakers of spoken languages when it comes to traveling and encountering people who use languages different from their own.

Cooper (2007, pp. 579, 580) comes to a nuanced conclusion “that whether it is a good or bad thing to be deaf is hard to determine. Plausibly, being deaf may be a bad thing for some deaf people but not for others.” Cooper acknowledges that Deaf scholars will likely be capable of proposing a more comprehensive list of “deaf goods” that could be used to evaluate the question further within a philosophical framework. One such example exploring deaf goods is Bauman and Murray (2014). If it is indeed the case that being deaf is not always a bad thing (all things considered), then we might be more justified in believing that selecting for deafness does not necessarily guarantee the kind of substantial, overall life harm that would make such a selection morally impermissible. This is not to say that the decision to select an embryo with genetic deafness is equally risky as selecting genetically nondeaf embryos.¹⁶

A second kind of objection to the moral permissibility of selecting for deafness is that parents unjustly restrict their child’s potential life plans. Fahmy (2011) attributes the origin of this argument to Dena Davis and Joel Feinberg. In choosing deafness for one’s child, the objection goes, the child’s right to an open future is unnecessarily violated. Silvia Camporesi (2010) makes an argument of this sort in “Choosing Deafness with Preimplantation Genetic Diagnosis: An Ethical Way to Carry On a Cultural Bloodline?”. Indeed, Camporesi writes, “I framed the issue in terms of justice toward the future children, as I argued that choosing deafness with PGD is unjust toward them because it is a broad limitation to a ‘reasonable array of different life plans’” (ibid, p. 93). Sara Goering, in her Stanford Encyclopedia of Philosophy article “Eugenics” (2014, pp. 14, 15), summarizes a similar argument from Dena Davis: “deliberately trying to conceive a child who will have relatively limited options—limited, in [Davis’s] view, not just due to enduring discrimination and social constraints, but also to bodily deficits—is morally impermissible.” Some of the life plan restrictions a deaf child might face include limited communication with peers who cannot Sign, reduced ability to pursue some careers (e.g., music), dependence on accommodations for some aspects of education, cultural events, navigation, safety, etc.

Those who make this argument can concede that a deaf life is worth living, and that deaf people can have good, fulfilling lives. However, the argument turns on the notion that being deaf will unfairly confine that child to a narrower choice of familial interactions, educational opportunities, career paths, social lives, etc. Deaf advocates can reply that being deaf opens future life plans that being hearing cannot, and that families who seek to choose deafness for their child do not view this as a limitation (Camporesi 2010). Reasonably, one might also argue that the kind of constraint that being deaf might impose on one’s life choices cannot be weighed against the other kinds of constraints that parents knowingly and unknowingly impose on any children they choose to have.

Interestingly, Nicholas Agar (2004), who maintains a life-plan-limitation view, also holds, as cited by Goering (2014, p. 14), that “in some circumstances, lacking a capacity like hearing will only lead to a small difference in relative freedom, and if so, then we might not have a ‘general requirement to replace genetic arrangements linked with deafness’ (105).” I thus suggest that the life plan restrictions of being deaf, at least for some children, may not be substantial enough to necessarily entail impermissible moral harm. Indeed, “[m]ost people with disabilities find that their conditions do not limit their ability to enjoy life, though most people without disabilities do not believe them” (Bagenstos and Schlanger 2007, p. 797).

More abstractly, results in cognitive science do not indicate that increased opportunities correlate linearly with increased well-being.¹⁷ Excessive multiplicity of choice can cause anxiety or be overwhelming. Robert Sparrow (2002, p. 11) raises a related point in “Better off Deaf” when he observes, “[i]n a society which fetishises individual choice and opportunity, it may seem obvious that these are goods.”¹⁸ Perhaps more options only increase our happiness to a point, and after that point, increasing options are neutral with regards to happiness. Without solid evidence, however, we ought not insist that the reduced magnitude of future openness for a deaf child could be grounds to make selection for deafness necessarily impermissible. Moreover, we might develop a system whereby breadth and worth of opportunities are distinguished and weighed separately. I expect that sufficient and worthwhile potential life plans exist for a deaf person who is the child of Deaf adults in a Deaf family, learns Sign as their first language, is raised in the Deaf community, and lives in a larger society which is accepting and accommodating to deaf people and Deaf culture.¹⁹

But what about Deaf parents raising a hearing child in the same way? This objection is considered by Camporesi:

I can concede […] the point that the deaf culture may have its compensations that hearing people cannot fully experience, but the fundamental point here is that deaf parents do not need to choose to exclude their children from the hearing world in order to include them in theirs (however, imperfectly include them, as parents may counterargue), because both worlds and languages are open to their children: both the hearing and the not hearing worlds, both the verbal and the nonverbal languages. (2010, p. 90)

The point Camporesi raises here, that Deaf parents could include a hearing child in Deaf culture (by teaching them Sign, acquainting them with Deaf people, getting them involved in Deaf community events etc.) is frequently asserted. There is good counterevidence, however, from children of Deaf adults (CODAs) that this is indeed challenging and “imperfect” (Mand et al. 2009). Plausibly, Deaf parents already are simultaneously aware of this “bicultural” option, to raise a hearing child with aspects Deaf culture, and also of the diverse experiences of CODAs in their own communities. The fact that some parents still prefer a deaf child is telling. Perhaps there is an asymmetry introduced when a hearing child is included in Deaf culture; namely, the parents cannot fully engage their child with respect to the child’s hearing culture. For example, when the child makes hearing friends who cannot Sign, the Deaf parents face communication barriers with those friends and probably their parents, too. The hearing child will have many experiences which the Deaf parents might have difficulty sharing or helping them with.

Regardless of problems with the restricting-future-life-plans objection, Fahmy points out that the argument can be set aside in the same manner as harming-the-child:

The decision that purportedly curtails the child’s right to an open future is simultaneously the decision which allows the child to exist and to have any future whatsoever […] The decision to select for deafness thus […] cannot be said to deprive the resulting child of opportunities he or she would have otherwise been able to pursue. (Fahmy 2011, p. 130)

This is the Parfit non-identity problem again.

Even once we can dismiss the notions that selecting deafness harms a child or restricts their options, a third objection remains. This objection does not focus on the child per se, but on the general circumstances, or state of affairs, brought about by the parental choice to select for deafness. By selecting deafness, the argument goes, the family introduces into the world a harmful state of affairs, and this harm is importantly avoidable (should a nondeaf embryo be alternatively selectable). There will be suffering and/or limited opportunity in the deaf child’s future world which could have been avoided in the selection of a different child. This formulation avoids the Parfit non-identity problem, which we could use to dismiss the first two kinds of objections. However, the harmful-state-of-affairs objection faces its own issues.

Firstly, David Wasserman and Adrienne Asch (2012, p. 30) hold that even if parents select a better overall state of affairs (by not selecting deafness, for example), “we do not think they should be seeking to improve the world at large in deciding whether to gestate and raise a child.” Reproductive decisions, in their view, should not require parents to bring about a particular state of affairs. So, one way to address the worry of introducing a potentially harmful state of affairs is to deny that parents should be primarily concerned with influencing “the world at large”. In other words, it cannot be the case that selecting for deafness is always impermissible, at least on the grounds that some harmful state of affairs obtains as a result, because choosing a particular embryo is not the kind of decision which requires parents to improve the broader state of their society or world.

Secondly, one might argue that allowing families to select for deafness places an undue burden on society, since society will be responsible for providing many of the accommodations, such as specialized education and interpreting services, that the child will grow to need. I think this concern is largely unwarranted. It is not at all clear that any prospective parents could make the balancing calculations required to evaluate the future impacts of their children. Characterizing this worry in another way Fahmy (2011, p. 132) asks, “[h]ow 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?” This becomes a threshold problem. Determining what is morally permissible depends on setting a threshold at some particular level. A state of affairs approach is therefore troubling if one is unwilling to choose a threshold for what sorts of potential harms constitute a state of affairs that it is morally impermissible not to avoid.²⁰

Lastly, it is also useful to note that some use the state of affairs approach to condemn selecting against disabilities at all. For example, Barnes (2016, p. 153) argues that, while selecting against disability might not be morally impermissible, it is at least morally blameworthy insofar as it can promote societal stigmas about disability and “communicate ableism”. In a similar vein, “[d]ifference and diversity,” write Grodin and Lane (1997, p. 248), “not only have evolutionary significance but, we would argue, are a major part of what gives life its richness and meaning.” Indeed, they conclude that “how we treat this problem will say a great deal about what kind of society we are and the kind of society in which we wish to live” (ibid). The idea here is that disability actually improves the overall state of affairs in the world.

The use of state-of-affairs reasoning to criticize selection against disability highlights how the introducing a harmful state-of-affairs objection to selecting for deafness errs by assuming that selecting a deaf child will necessarily introduce a “harmful state of affairs”. This is precisely the intuition that we have been starting to challenge throughout “The source(s) of moral harm”. Even if it were true, however, that selecting deafness introduced harm in the world, it is somewhat trivial; every reproductive decision will plausibly introduce some harm into the world. Every child’s life will include some limited opportunities and suffering, determined by climate, politics, socioeconomic status, biology, etc. Granted, these limitations are differentially modulated by parental decisions, but they interact in complex ways regardless of disability status. All the preceding considerations suggest that evaluating impact on the overall state of affairs will not establish definitively that selecting deafness is morally impermissible.

To conclude “The source(s) of moral harm”, I emphasize that all the supposed moral harms of selecting for deafness in some way rely on assumptions about the inherent “badness” of being deaf (or its consequences). What happens if we question the bad-difference view? I return to this explicit question in “The value-neutral model of disability”. Meanwhile, in “Initial arguments in favor”, I present some initial arguments in favor of selecting for deafness, which run contrary to the objections presented here in “The source(s) of moral harm”.

Erik Parens (2017) examines the concept of disability in “Choosing Flourishing: Toward a More ‘Binocular’ Way of Thinking about Disability”. He notes that Disability Studies scholars and some philosophers have proposed analyses similar to his (ibid, p. 143). While Parens cites Elizabeth Barnes, he does not mention her value-neutral model of disability, perhaps to the detriment of his own argument.

Parens proposes what he calls a more “binocular” view of disability. His choice of term is slightly unfortunate in the way that it centers a metaphor of vision, but the invitation to expand our conception of disability is a promising one. Parens’ argument turns on the notion that when parents choose features of their potential child, they are not choosing in an “all else being equal” environment (ibid, p. 141). This “all else being equal” often plays a role in arguments against choosing disability, because the premises assume that making the choice between particular features can be made independently of all other considerations. In Parens’ view, the choice takes place within a framework that renders a condition typically considered to be a disability into something else. “When people speak of choosing deafness or short stature,” writes Parens, “they are not choosing those traits because they take them to be disabilities. They are choosing those traits because they take them to be enhancements, where by ‘enhancement’ I mean an intervention that will facilitate a child’s or a family’s flourishing, as they understand it” (ibid, p. 44, emphasis mine). So, according to Parens, a couple that selects for deafness in their child is, in a sense, selecting not for disability, but instead for flourishing. Here again we see the assumption that disability, as a kind of bad-difference, must be opposed to well-being; this is because (for Parens) selecting for disability and selecting for flourishing are mutually exclusive. Parens’ evaluation, though, does seem consistent with some Deaf people’s desires during genetic counseling. I. King Jordan (1991), scholar and first Deaf president of Gallaudet University, reports that Deaf couples, even if neutral about whether or not their child is deaf, often want a child without other traits, such as motor impairment, which are perceived as undesirable disabilities in the Deaf community.

Unfortunately, the way Parens’ account erases disability in the case of selection is not ideal. His conception of selecting disability does not actually challenge the bad-difference view; it seems instead to assume that some disabilities (such as deafness or dwarfism) can be flourishing-promoting “enhancements”. A different theory of disability may provide more traction on the question of selecting for genetic deafness. The situation identified by Parens, however, that parents who choose an attribute such as deafness are in a sense choosing something positive (flourishing) for their child, is something we should keep in mind. Perhaps the contribution here is simply a reminder to acknowledge that, when it comes to their potential future children, disabled parents can be thoughtful, dedicated, and invested choosers. Our task is now to describe an account of disability which neither assumes the bad-difference view nor fails to adequately capture what a disability like deafness is (and thus, how it impacts on well-being and selection decisions).

In “Disability, Minority, and Difference” Elizabeth Barnes (2009) outlines the value-neutral model of disability that she extensively develops in her book The Minority Body: A Theory of Disability (2016). In both cases, she gives reasons why she addresses the model to physical disabilities only.²² In the remainder of this section I will give a brief account of Barnes’ model.²³

The central move Barnes (2016, p. 55) makes is to characterize disability as difference, or more relevantly, as mere difference: “having a disability makes you physically non-standard, but it doesn’t (by itself or automatically) make you worse off.” Barnes’ proposal counters the bad-difference view. Disability is the kind of feature, so the bad-difference view usually goes, that makes an overall negative difference in one’s life; that is, to have a disability is to have a suboptimal body, to have a harmful overall deficit in one’s biology. Further, “[a]ccording to bad-difference views of disability, not only is having a disability bad for you, having a disability would still be bad for you even if society was fully accommodating of disabled people” (Barnes 2014, p. 89).

Barnes cites the testimony of disabled people themselves and extensive literature on this topic—more widely acknowledged since the rise of Disability Studies—to show that disabled people do not typically have an overall negative understanding of their health or well-being.²⁴ Contrary to what the bad-difference view suggests about their disabilities, most people with disabilities do not describe themselves as suboptimal, deficient, dysfunctional, etc. but rather as healthy, whole, functional, etc. Although this does not establish that disabled people are or are not any of these things (there are multiple, interacting issues when it comes to self-assessments of well-being), Barnes reminds readers that “[t]he intuitions of the (privileged) majority don’t have a particularly good track record as reliable guides to how we should think about the minority, especially when the minority is a victim of stigma and prejudice” (Barnes 2016, p. 156).

Barnes (2016) suggests that we can better understand this apparent “discrepancy” by distinguishing between what she calls “local bads” and “global bads”. Precisely: “Φ is locally bad for x iff Φ has a negative effect on x’s well-being with respect to some feature F or some time t. Φ is globally bad for x iff Φ has a negative effect on x’s overall well-being” (Barnes 2016, pp. 80, 81). No one will deny that disabilities can cause local harms; there are many ways, both due to biology and to the social world, in which everyday living as a disabled person can be difficult. For example, a deaf person may experience a local bad when an important town hall meeting fails to provide sign language interpreters. However, the presence of local bads does not necessitate that disability will cause global harm.

The distinction between local and global harms expands into one between narrow and overall well-being (and was hinted at by Parens, treated above).²⁵ There are many goods that can arise from disability, and disabled people can have meaningful and happy lives, like everyone else.²⁶ “[J]ust because disability takes away a freedom (creates a limitation),” writes Barnes (2009, p. 347), “doesn’t allow us to conclude that it makes a person worse off. The same feature that takes away a freedom (creates a limitation) could create other freedoms (prevent other limitations) elsewhere.” Furthermore, Barnes argues that “[w]hether Φ is good/bad for x is not merely a function of whether Φ is itself good or bad simpliciter with respect to well-being. Whether Φ is good/bad for x is also—and in large part—a matter of what else (both intrinsic and extrinsic) it is combined with” (Barnes 2016, p. 86). So, it cannot be the case that disability is necessarily a bad-difference on the whole. Instead, disability should be characterized as a mere-difference, or value-neutral with respect to overall well-being. On this view deafness would not be characterized as a deficit or a suboptimal condition, but rather as a particular sort of “minority body” (Barnes 2016, p. 6).

The biggest (immediate) challenges for the value-neutral model concern causing and removing disability.²⁷ Barnes uses principles from reproductive ethics to argue that causing disability, even if considered a mere-difference for the potential bearer, would not be permissible if the harms caused were serious enough. Thus “it’s impermissible to cause disability for the very same reasons,” Barnes (2009, p. 349) writes, “that it’s impermissible to allow disability. It’s impermissible because it’s impermissible to cause a person (particularly one’s own child) serious harm—even if that harm stands a good chance of being outweighed by other benefits.”

Deafness, however, is a condition that does not cause serious overall harm and suffering; therefore, I argue, in an open, accepting, and accommodating society, parents might not be obligated to choose a hearing embryo over a deaf one.²⁸ In the case of deafness the potential local harms to the child do not seem serious enough (deafness does not cause constant pain, for example) to warrant an injunction against selecting for it. In terms of global harms, the testimony and scholarship about Deafness suggests that deafness itself is not such a harm. As Parens suggests, reasonable parents can desire a deaf child over a hearing one from a positive mindset about their child’s potential to flourish in their family and community.

Barnes admits that she desires a successful value-neutral account to condemn negative selection against disability but concedes that her account cannot maintain this. The most her account can do is hold it morally blameworthy to select against disability. Motivations to select against disability seem grounded in the bad-difference view, a view Barnes (2009, p. 350) calls “a profound misunderstanding.” In her view selecting against disability is thus “to import disparaging views about disability (that it is something sub-optimal, rather than just something different)—and that is blameworthy” (Barnes 2009, p. 351).

One of the strongest objections to a mere-difference view comes from Jeff McMahan (2005). Setting aside how one considers a single disability, McMahan says, it is clear that multiple disabilities aggregate into an overall bad-difference. It is not the case that adding several “neutral” disabilities results in a merely different kind of life for the bearer of those disabilities. Barnes (2009, p. 352) responds in part by saying that “[i]f individual disabilities involve local harms, then those harms will naturally add up—having lots of disabilities will likely lead to lots of harm. But the crucial point here is just that this doesn’t license the conclusion, for any particular disability, that it will make a person worse off on the whole.” This also goes back to Barnes’ argument that whether a disability is good/bad for someone depends on what it is combined with. Deafness, as a single disability, seems different from the deafness experienced by a deaf-blind person, for example. Because deafness, when combined with another disability (such as motor impairment), might seem especially harmful, does not mean that deafness, when considered individually, is defined by that level of harm.

Another response to McMahan’s objection is that the harm accruing to multiple disabilities is an emergent phenomenon, i.e., a new effect accruing to a set of causes and not merely a sum of the individual effects of those causes. Singly, a disability can be neutral with respect to overall well-being, but perhaps, summed together, multiple disabilities can interact to produce substantial, emergent harm. One of the mechanisms by which this could occur is the compounding reduction of capabilities that a person might use to address local harms. Emergent properties are more than the sum of their parts, so in this way we can account for the seriousness of multiple disabilities without designating individual disabilities as bad-differences. I do not think that McMahan’s objection from multiple disabilities should require us to reject Barnes’ analysis of particular disabilities, especially in the narrow case being considered in this paper.

Barnes (2009, p. 352) concludes with the following words: “[m]any things make life harder; but they can also enhance and enrich it. Disability is just one of many such features—the sorts of things that create difficulty and hardship, but which make the world a more interesting and vibrant place in the process.” With her value-neutral model of disability as mere-difference, understanding disabled people as people with minority bodies, we have good reasons for both mainstream philosophy and applied ethics to make a shift in their understanding of disability. Now, equipped with this model, we can further develop the case of selecting for deafness and see how the value-neutral account helps to support the moral permissibility of this reproductive choice.