Practical problems in medical ethics: II. Deaf by design

This week we are considering three case studies in medical ethics, proposed recently by my colleague at City College, Jeff Blustein. A couple of days ago we have encountered the first one, a case that stemmed from an unexpected finding of non-paternity, involving a kidney transplant. This time we’ll cut our ethical chops on a situation Jeff refers to as “deaf by design.”

Before we proceed, let me remind you of the six criteria that my colleague suggested in order to arrive at a good philosophical evaluation of the case studies:

1. Formulate the problem. This is not always as easy as it sounds, as there may be more than one way to formulate the problem itself, before we even begin to consider possible answers.

2. Consider the relevant information. If there are critical pieces of information that are missing, articulate why they are relevant to the ethical analysis, and what follows from the fact that they are currently missing.

3. Refer to the ethical principles involved. An ethical dilemma arises when some values dictate incompatible courses of action, and it is not immediately obvious which should take priority.

4. Review alternative courses of action. Consider the possible alternatives, compare the range of outcomes against relevant principles and values. Keep in mind that it may be necessary to accept trade-offs.

5. Suggest an ethical solution. Consider the solution that appears to be best, all things considered, that is, taking into account all the various ethical principles at stake in the case.

6. Suggest how to best implement the proposed solution. Who, how, where, and when?

And now onward to the second case study! John and Karen are both deaf, and desperately wanted to have a deaf baby. When genetic testing showed that this was extremely unlikely, they were devastated. It took them two years before they got over their disappointment and started trying to conceive their first child.

The couple’s attitude may shock many people. If you can hear, it’s hard to understand why anyone would want a deaf child. But John and Karen’s views are not that unusual among those who identify themselves as Deaf with a capital D. The Deaf view their condition not as a disability, but rather as the underpinning of a rich culture that should be celebrated and preserved.

With the identification of the most common genetic mutations linked to deafness, it is now possible, in theory, to make an active choice to have a deaf child. Suppose then that there is a reliable prenatal genetic test that can determine whether the fetus has one of these mutations. John and Karen decide to have in vitro fertilization and then to test the resulting embryos using pre-implantation genetic diagnosis. This allows specialists to examine the genetic makeup of the very early embryo before it is implanted. Two of the embryos turn out to have one of these mutations; two don’t, although in all other respects they are perfectly healthy. John and Karen decide to discard the latter two and implant the first two, hoping for a deaf child. They don’t believe that discarding the embryos is the same as abortion.

So now some pertinent questions to mull over:

On what grounds might a geneticist turn down the request of someone for help in having a child with a particular “defect,” such as deafness?

How does one determine what constitutes a “defect”?

Is there something wrong with John and Karen deliberately trying to have only a deaf child?

Would your answers change if John and Karen were dwarves and wanted to only have a dwarf child?

If you’ve read the first installment of this series, you know that I had a strong intuitive reaction about the most defensible answer in that case. Reaction that, of course, then had to be subjected to critical analysis, on my part and on the part of my colleagues present at Jeff’s talk, or it wouldn’t count as philosophy, but simply as a “gut feeling.” I also had a very strong intuition about this case, though not, as we shall see in a couple of days, regarding the third one.

So, is it ethical for deaf parents to want a deaf child? Hell no. There is no reasonable doubt, in my mind, that deafness is indeed a disability. How do we know this? Because biologically speaking a normally (as in: positioned in the middle of a Bell curve describing the pertinent biological trait) functional human being can hear, and that sense is important for navigating our environment. Yes, of course people can adapt to the disability, and live perfectly fulfilling lives despite it, but it seems downright perverse to me that a parent would cause that to happen on purpose to a child.

That child will be deprived of a normal, and very useful, human sense of perception, which could make the difference not just in day-to-day interactions with others, but even in dangerous situations (like hearing a fire alarm, someone’s warning about a car approaching, and so forth). Moreover, the child will be deprived of a number of pleasurable experiences, such as listening to music, or enjoying a movie without having to read the subtitles.

I understand that these days talk of “disability” is rather politically incorrect, but I’m unwilling to bend reason to adapt to people’s sensibilities. I have a close friend who has spent most of his life on a wheelchair, and he gets positively pissed when people tell him that he is “differently abled.” He immediately, and very earnestly, asks whether they’d like to exchange places with him.

There is another problem, minor by comparison, with the parents’ position. It is simply not true that the child wouldn’t be able to be a member of the Deaf community on account of his ability to hear. He could easily learn sign language and be an engaged member of both communities. The two are not mutually exclusive. Of course he wouldn’t experience the world the way his parents do, but why should that undermine his social intercourse within the Deaf community? Unless the Deaf are bent on discriminating against “normals,” which would definitely not be the ethical thing to do.

Jeff’s question about dwarves is also to the point: would we even be having this discussion if we were considering other, more crippling, kinds of disabilities? Refer again to my friend on the wheelchair and the point should be obvious.

There is yet another angle available here, somewhat inspired by John Stuart Mill’s famous distinction between high and low pleasures. He was concerned with an obvious problem intrinsic in the early version of utilitarianism, as proposed by his mentor, Jeremy Bentham. If all the utilitarian is saying is that what is moral is whatever maximizes most people’s pleasure and minimizes most people’s pains, then he risks unleashing a race for the minimum common denominator. Most people will find, say, watching soap operas far more pleasurable than going to a real opera, or listening to a symphony, which would lead to the extinction of those art forms. To preclude that, Mill came up with the notion that there are different qualitative levels of pleasure, and that moreover, the ones in a position to make appropriate judgments are those that are capable of enjoying both.

How is this relevant here? Because a common argument from the Deaf community is that many deaf people actually refuse cochlear implants, because they don’t want to lose their connection to their community, and don’t think that gaining the ability to hear is worth the trade-off.

But, with a nod to Mill, that’s simply not an informative case. Far better would be to ask people who could hear and then lost their ability whether they’d like to gain it back. I’m going on a limb and bet that the answer would be overwhelmingly positive.

When we discussed this case study in my Department, a colleague brought up the broader issue of the ethical value of human genetic engineering in general. Would it be okay, for instance, to allow the selection of babies with morally neutral characteristics, such as blue eyes?

I don’t want to go too far down that road, because it’s a complex discussion suited for a separate post. But I would note that very few, if any, human traits are truly ethically neutral. Take blue eyes, for instance. Research shows that people with blue eyes (as well as tall people, as well as attractive people) actually have a significantly easier life, other things being equal. It seems that we still commit the Platonic fallacy of equating beauty with truth, and think that beautiful people must also be good people. That said, we are getting far away from the case of deafness by design, so I’ll stop here.

What do you think?