Maybe It's Just Me, But...

Musings of a mildly mad multi-disciplinarian

Selecting for Deafness in Children

Should parents be able to select for deaf children?

New technology often leads to new ethical dilemmas, and this is especially true when the technology affects sensitive, personal matters like procreation. In a new article in the journal Bioethics, philosopher Melissa Seymour Fahmy considers the question of deaf parents using preimplantation genetic diagnosis (PGD) to select for genetically deaf children. While most hearing people (and some deaf people) regard this practice as disturbing if not abhorrent, some deaf parents consider deafness to be an integral part of their lives, a culture rather than a burden, and they want their children to share in this. Without taking sides in this debate, Professor Fahmy looks into why negative judgments of selecting for deaf children are so common, and asks if they are defensible in terms of moral philosophy.

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First, she considers the attribution of harm to the child herself. Surely, the critic may say, the child is harmed by being robbed, by design, of the capacity to hear the sounds of the world around her, including music, other people, and so forth. Of course, judging that loss to be a harm is begging the question (assuming our conclusions), but even if we grant it, the argument nonetheless fails. Why? Since the embryo is being selected for deafness, if the parents were not allowed to select that embryo, it would not be brought to term—the child who would suffer from the harm will never have existed. In other words, it is not a choice between that child being deaf or hearing; rather, it is a choice between that child being born deaf or not being born at all. (Another child may be brought to term, but then we are talking about someone else, not the potentially deaf child.)

Next, Fahmy considers the argument from a child's "right to an open future," a term that comes from moral and legal philosopher Joel Feinberg. Basically, the idea here is that intentionally selecting for a deaf child involves the parents limiting that child's options in her future. But this argument suffers from the same problem as the last one: if that child were not born deaf, she would not be born at all. Since there is no way to bring that child to term without being deaf, she is not being deprived of any capacity or options that she could have otherwise had. (Fahmy then contrasts this with the decision not to fit a deaf child with cochlear implants, which would increase her opportunites, since she could then choose to embrace the hearing culture, the deaf culture, or both.)

The problem with both of these arguments—harm to the child and denying her the right to an open future—is that they both focus on that particular child, who would not be born at all if she were not deaf and therefore has no alternatives to which we can compare deafness. The third argument Fahmy considers avoids this difficulty by claiming that chosen genetic deafness is a undesirable state of affairs, regardless of who is particularly harmed or wronged by it. (Many claim that the destruction of nature and the desecration of art should be treated the same way, as an undesirable state of affairs regardless of any harm to wrong to any particular persons.) According to this argument, simply bringing an intentionally deaf child into the world, instead of a hearing one—even though they are two different persons—would be considered wrong. The idea is to prevent harm or wrongdoing in general, not to any particular person, and in this sense, either argument considered above can be restated in these terms.

This argument has more plausibility, but as Fahmy argues, it also has some potentially disturbing implications—namely that, if acting to create a child with lesser capacities for an open future is wrong, then failing to prevent such a child from being born is also wrong, though perhaps to a lesser extent (based on the idea that causing harm is worse than merely allowing it). This is a much more common occurence, since a significant number of parents have (or share) some genetic condition that involves some decrease in life options and which, with some probability, they will pass onto their children. If we are going to limit options to select for a condition (such as deafness) that limits future capabilities, then wouldn't we have to limit options for couples who might, though natural procreation, bring such a child into the world? And who is going to decide what capabilities are important enough to trigger this action? As Fahmy puts it:

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?

(This reminds me of a very emotional scene in the movie The Family Stone in which a young woman asks her boyfriend's mother, who also has a gay son, if she would have been happier if he had been born straight. Homosexuality certainly doesn't foreclose options for an "open future" as deafness does, but it is not difficult—in fact, it is all too easy—to see this becoming a tinderbox of controversy very quickly.)

Next, Fahmy considers two arguments that focus more on the character of the selecting parents rather than on the effects on the child (or the world in general). The first argument, based on parental responsibility, argues that good parents take the responsibility to ensure their children have the opportunity for a full life. Parents who select for deafness, of course, are proud of their deaf culture and consider that that is a good life for their child, and telling them otherwise involves making arguments like those discussed above; so parental responsibility goes nowhere. The other argument is from civic responsibility, claiming that intentionally bringing a child into the world who will draw a disproportionate share of public resources—such as education and accommodation—is unfair. But this ignores contributions made by differently-abled people to society, as well as invoking the problem of preventing such children from being born by coercive means.

Finally, Fahmy cites two parental virtues that are endangered by genetic selection: "openness to the unbidden" and unconditional parental love. It is argued that both of these virtues are threatened when parents exert too much control over the characteristics of a child, which either expresses a fear of the unknown or the implication of rejection if the child does not turn out "as planned." Certainly either of these can happen, but not necessarily in every case, and certainly not only in parents that screen for genetic characteristics. Even if these problems are more likely in the case of these parents, it still seems too weak an argument to support restrictions on procreational autonomy.

The overall argument that Fahmy makes in her article is that, despite many people's immediate revulsion to the idea of selecting for what they see as a tragic disability, making an ethical case for regulating or prohibiting genetic screening for deafness (or similar conditions) is not easy. In her conclusion, she reiterates that if we are going to impose conditions on genetic screening, we may also have to do the same for natural procreation, which will be even more controversial. Also, for all the attention given to preimplantation screening, the arguments surveyed indicate that postimplantation and postbirth decisions are even more important due to their potential to affect an existing child's capabilities, unlike genetic screening.

The argument that appeals to me, and which several of the arguments presented by Fahmy glance at, is that selecting for deafness imposes the parents' choice on the child in an extreme and irreversible way. Similar to Feinberg's argument, choosing to have a deaf child forecloses the future choices of that person; she can never know what it is to hear (naturally, without a cochlear implant) because of choices her parents made for her before she was born. But rather than focusing on the loss of "open future" of the child, I focus more on the imposition of choices on her by her parents. I can fully appreciate the desire of deaf parents to have their child to grow up in that same culture, and I have no doubt that those parents derive tremendous pleasure and solidarity from that culture and sincerely want to share that with their child, in the same way that many parents share their religious faith, family traditions, or love of the arts or sports with their children. But personally, I can't see imposing such an irreversible choice, which forecloses so many other choices and opportunities, on a child who will never have the chance to make that decision for herself.

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Reference:

Melissa Seymour Fahmy, "On the Supposed Moral Harm of Selecting for Deafness." Bioethics 25(3), March 2011, pp. 128-136.

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You can follow me on Twitter and also at the Economics and Ethics blog and The Comics Professor blog.

Mark D. White is the chair of the Department of Philosophy at the College of Staten Island/CUNY.

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