If genetic diagnosis and preimplantation selection could be employed to produce deaf children, would it be acceptable for deaf parents to do so? Some say no, because there is no moral difference between selecting a deaf embryo and deafening a hearing child, and because it would be wrong to deafen infants. It is argued in this paper, however, that this view is untenable. There are differences between the two activities, and it is perfectly possible to condone genetic selection for deafness while condemning attempts to deafen infants at birth.
Statistics from Altmetric.com
If you wish to reuse any or all of this article please use the link below which will take you to the Copyright Clearance Center’s RightsLink service. You will be able to get a quick price and instant permission to reuse the content in many different ways.
Some deaf parents have argued that they are entitled to have deaf children.1 According to them, deafness is not a disability but a culture which they should be permitted to pass on to their offspring.2 One way of doing this would be to use in vitro fertilisation and preimplantation genetic diagnosis, and to select a “deaf embryo” for an attempt to start a pregnancy.3
One popular argument against this is to say that selecting a deaf embryo would not in any important sense be different from deafening a hearing child, which, in its turn, would be clearly immoral.4 My aim in this paper is to show that this argument is not sound. I believe that the analogy is misleading, and clouds the issues surrounding disability and prenatal selection.
The analogy is based on the assumption that only the objective, or impersonal, outcomes of our actions are morally relevant. The most important of these in our two cases are the following:
|If a deaf embryo has been selected||If a hearing child has been deafened|
|A deaf individual exists||A deaf individual exists|
|A family has a deaf child||A family has a deaf child|
|These outcomes were foreseen when the choice was made||These outcomes were foreseen when the choice was made|
As these outcomes do not differ from one choice to the other, the argument then goes on to say that if we accept one, we must also accept the other. Therefore, because the idea of deafening a hearing child would be outrageous, we cannot permit either.5
The analogy breaks down when a more personal, or individualistic, angle is added to the considerations. The choice between embryos and the choice between deafening or not deafening a hearing child can be clearly distinguished by asking, counterfactually, who would have existed and what would have happened had the original choice not been made. The main differences are the following:
Put simply, parents who select a deaf embryo (or any embryo for that matter), give that specific potential person a chance to live, with the qualities that that individual happens to have. By contrast, parents who deafen a hearing child (or perform any other irreversible operation on their progeny) change the qualities of an already existing individual.
|If the deaf embryo had not been selected||If the hearing child had not been deafened|
|This individual would not have existed||This individual would have existed|
|This individual would not have been hearing||This individual would have been hearing|
Seen from the viewpoint of the individuals produced, the situations look rather different. When the person chosen as an embryo matures enough to evaluate her situation, she can only conclude that the options for her were life as deaf or no life at all.6 When, in turn, the person deafened as an infant assesses his life, he sees the options once open to him as life as deaf and life as hearing.
Those who condone selecting a deaf embryo assert that it is morally acceptable to bring an individual into existence even if, or because, this individual will probably be deaf. It does not follow from this that it would be fine to change the qualities of already existing people, when it is at least arguable that the change would be for the worse. Selecting a deaf embryo is, in an important moral sense, different from deafening a hearing child, and we can, logically speaking, accept one without condoning the other.
THE REAL CHOICES
In most Western societies, the child’s best interest is seen as paramount when it comes to decisions which may concern them.7 Contrary to what people may believe,8 however, this is not normally a factor in preimplantation genetic selection.9 This becomes visible in an analysis of who can be affected by the decision to select a deaf embryo and how.
There are four major parties involved in the choice, namely the selected future child, the family, society as a whole, and the possible children whom the parents did not choose to implant. The effects of selecting a deaf embryo and of deafening a child on these individuals and groups are as follows:
|When a deaf embryo is selected||When a hearing child is deafened|
|The child||Gets to live the best life possible for her||Loses a sense? Gains a culture?|
|The family||Get the kind of child they want||Get the kind of child they want|
|Society||Has to provide for some special needs||Has to provide for some special needs|
|Other children||Do not get the best lives possible for them||Not applicable|
In the case of preimplantation diagnosis and selection, any individual who comes to existence will, other things being equal, have the best life possible for her. This means that arguments from the child’s best interest cannot be used against the choice the potential parents make—whatever it is.10 The real clash occurs between the family’s interest to have the kind of child they prefer, and society’s claim that the production of yet another individual with special needs will place a burden on scarce resources. The real policy choice must be made between reproductive autonomy and socioeconomic considerations.11
In the case of deafening an infant, however, the child’s best interest is of paramount importance. There are two competing views concerning what is best for the individual: one saying that deafness is a disabling condition which ought to be avoided, and the other stating that it is a rich culture to which parents should be entitled to introduce their children. Policy decisions must be based on a choice, or a compromise, between these clashing interpretations.
As the analogy between selecting deaf embryos and deafening existing children is untenable, the policy solutions can be different in each case. This leaves open four possible combinations, but let me proceed by sketching a model in which the preimplantation choice is left to the parents, with no moral strings attached, while the hearing of existing children is protected even against their wishes.12
Freedom in embryo selection can be defended by an appeal to reproductive autonomy, which has recently been recognised in several international agreements.13 According to the ethos of these agreements, people should be left free to make any decisions concerning their offspring, as long as they do not harm their children, or other innocent third parties, in the process. Because life—hearing or deaf—is not normally seen as a harm, parents cannot be said to damage any (otherwise relatively healthy) children they produce.14 And because other people—hearing or deaf—are not in any real sense injured by the parents’ choice (whatever it is) people should be entitled, morally as well as legally, to bring into existence the kind of children they want.15
Decisions to interfere with the bodily integrity of an already existing child, on the other hand, do not fall within the scope of reproductive autonomy. The question here is what is in the best interest of the child. The deaf parents’ argument must be that the child will be better off as a member of the deaf culture. There are, however, considerations which may go against this claim. If the parents die before the child reaches maturity, and if the deaf community is not sufficiently well established, the deafened individual may face all sorts of problems in her life later on. She may then come to think, not unreasonably, that in their well meant attempt to offer her one specific culture, her parents have actually deprived her of the means to flourish in another culture, the culture in which she eventually has to live.
Similar considerations cannot readily be extended to the reverse case, where society has stepped in and prevented the parents from deafening the child. The child will be brought up to cope with both cultures—the deaf and the hearing—and whatever happens to his parents, he will be able to live his life without excessive difficulties. If hearing is a burden to him he can, when he has reached maturity and if he genuinely wants it, deafen himself and join the deaf culture. The early experiences in that culture as a child will be lost, but he will still have the chance to decide for himself, which is more than can be said for the alternative scenario.
To recapitulate, I have argued that selecting a deaf embryo and deafening a hearing child can be conceptually and morally distinguished. The cases are similar, if only impersonal outcomes are taken into account, but they are different as regards who would have lived and what would have happened, had the choice not been made. In the first case, a deaf future individual is given the chance to live the best life possible for him or her. In the second case, the qualities of a hearing individual are changed to accommodate the wishes of his parents.
I have also given some reasons for thinking that although it is morally acceptable to select a deaf embryo, it is not morally acceptable to deafen a hearing infant. The freedom to select can be supported by appeals to reproductive autonomy, but the child’s best interest will probably not be served by deafening him.
Those who believe that we should always produce “the best children we can” are likely to argue, against my conclusions, that deafness is a disability, and that we should never deliberately bring disabled individuals into existence. My question to them is, why not? All human beings live the best life they can, and if life is a good thing, then why deprive some potential individuals of that opportunity because of their personal qualities?
Others who think that deaf embryos should not be selected can make an appeal to the adverse socioeconomic implications of the choice. They can argue that prospective parents have no right to burden society with the extra cost of providing for the special needs of their “unnecessarily” deaf offspring. These critics of selection face two challenges. Trading freedom for economic gain is a sensitive issue, especially when it comes to reproductive freedom. And it is difficult to judge whose existence, qualities and, consequently, needs, can be deemed as unnecessary.
Those who believe that parents should be entitled to change the qualities of their existing children, in their turn, can argue that my solution favours unreasonably the only culture I am familiar with, namely, the hearing culture. My response to them is that I have not made any value judgements between the deaf and the hearing cultures. I have only argued that the freedom of choice of the child can be better preserved by choosing the option which is, to a fair degree although not completely, reversible when the individual is mature enough to make his own decisions.