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A Healthy Debate About Health

Another round with Jonathan Coppage on eugenics and "health-obsession."
wheelchair racer

I want to applaud Jonathan Coppage for penning an extremely well-written and well-considered rejoinder to my piece from last week about eugenics. With his permission, I’d like to take the argument one more round.

The heart of his objection is here:

Millman in fact claims that “eugenic motivations aren’t suspect as such, but perfectly normal,” so long as they are properly tempered with humility and a recognition of the inner life of others not like us. For “everybody wants their kids to be healthier, including being born healthier. There’s nothing wrong with trying to ensure that—unless there’s something wrong with what you are doing to ensure it, or unless you take your standards of what constitutes ‘health’ to unreasonable extremes.”

The problem is, taking “health” to unreasonable extremes is just what is at issue in this discussion. Dougherty doesn’t object to Tay-Sachs carrier couples adopting or even parting ways, after all. He voices concern over social policy and social stigma turning against those who fall short of an increasingly healthy society’s increasingly stringent expected standards. A moral abhorrence at abortion is certainly at work in his defense of Down children, as is no secret to anyone familiar with his work. But resisting the prenatal extirpation of the Down community is about more than the abortion wars. It is precisely about how poorly our society is equipped to understand health reasonably, and what consequences flow from that shortcoming.

If I take that literally, Coppage would seem to be saying that it is unreasonable to treat Down Syndrome as a negative health condition to be avoided. And I just don’t see how that can be sustained. If Down Syndrome were caused by a pathogen rather than a genetic abnormality, and could be prevented or cured, I can’t imagine that Coppage would be arguing that doing so would be wrong – even though it would deprive the world of the unique inner life of Down children.

Or perhaps he would. I am familiar with that kind of argument from the disability rights movement. There are certainly members of the deaf community who will argue that cochlear implants are wrong, because the deaf experience is genuinely different, and fecund in its own way, not merely inferior. And they aren’t wrong about the latter! But they are about the ethical implications. Two apparently conflicting claims – that deafness is a genuine disability, something that a parent might rationally wish for her child to be spared; and that deafness is the fount of unique and distinctive perspectives on the world, with their own beauty, which the world would in some sense be poorer without – can both be true. They are both true. Precisely because they are both true, in the abstract there’s something wrong with society mandating cochlear implants for deaf children, and something wrong with society prohibiting cochlear implants for children. We should leave it up to parents to decide.

I would say the same is true for children with Down Syndrome – again, if we take the specific questions that abortion uniquely raises off the table for the moment.

To my mind, that really is enough to settle the ethical question at issue – whether there is something distinctively wrong about eugenic motivations, that is to say, thinking about the genetic health of our offspring and acting licitly to promote that health. But the ethical question isn’t the only one in play; much of the debate is really about sociology rather than ethics, the fear that social pressure will be brought to bear to make the “right” choices, where “right” is understood to mean “the one that makes society the most economically productive in aggregate.”

Well, if you want to debate sociology, you need data, and most of what I’ve seen in the debate is anecdote. Personally, when I look out, I see a culture much more interested in helping people with disabilities live as full and active a life as possible than was the case in previous generations. Those kids with autism who once would have been institutionalized? They’re part of the family now. Far from being “missing faces,” the faces of children with Down Syndrome are if anything more present in our lives today than I remember them being when I was a kid. Back in “America’s dark 20th century” a President of the United States had to hide his disability for fear of being thought unfit for leadership; now we make culture heroes of legless marathoners and mountain-climbers. Maybe that’s just the view from Brooklyn, a weird place that embraces slow food and natural childbirth but can also be cut-throat about getting into the “right” middle school. But if the fear is that the ability to prevent disabilities (whether by morally licit or illicit means) will make us intolerant of disability, anecdotally I see a lot of evidence running the other way.

The other way of parsing the question of sociology isn’t by talking about subtle coercion, but simply by talking about how power, individual and collective, shapes our individual, and collective, preferences. This is the direction that Coppage goes when he cites Yuval Levin on the stem cell research debate:

[A]s biomedical advances have taken the tools provided by the previous centuries’ advances in physics and chemistry and applied them to the human form, we have gained the power to manipulate that necessarily accompanies the power to heal. And now we have to discern how to use the tools science provides us.

Levin describes how the embryonic stem cell research debate gave a very pessimistic peek into what could be our biotechnological policy future. Media, politicians, and physicians united in urgent hyperbole as John Edwards toured the country promising that lifting a partial ban on federal funding of human embryonic stem cell research would cause Christopher Reeve to stand up and walk again, and Arlen Specter claimed it held “the potential to conquer … all the maladies we know.” Those raising ethical questions were berated and blamed for the suffering of the sick. So far, we have found that “when the pursuit of health through science and medicine conflicts with even our deepest commitments—to equality, to the protection of the weak, or to responsible self-government—science and medicine typically carry the day.”

I think that last sentence from Levin assumes a very substantial percentage of its conclusions. Specifically: Levin is simply asserting the force of the moral objections of those opposed to such research. He implies that there’s something obvious (if disputable) about the moral status of an embryo that the pressure of the desire to heal overwhelmed. Allow me to tell a somewhat different story, a story according to which most people never seriously thought an embryo was comparable in moral stature to a human being, but for whom the question was generally not a pressing one. The prospect of research that depended on the destruction of human embryos suddenly made the question pressing – and put weight on the contrary side of the ledger. The proposition, “as soon as it’s a zygote, it’s a baby” is, perhaps, easier to assent to casually than once there are costs attached. That doesn’t mean the proposition is wrong – but it does mean that it’s wrong to describe it as one of “our deepest commitments.”

Because here’s the thing: you can’t wish power away. You don’t have to use it – but not using it is a choice in a way that not having it is not. That’s something the advocates of stem-cell research understood that opponents have had a harder time grappling with – which is completely normal and unsurprising. But the stem-cell research debate did not prove that we care “too much” about health. What the stem-cell research debate did was expose the shallowness of our commitment to something abortion opponents thought was fundamental.

Finally, I want to talk about Coppage’s concluding section, about receiving a disabled child as a gift, and how an obsession with the “fitness” of our offspring makes it harder to receive that gift. I think there’s some real truth here – but it’s a broader truth that stretches well beyond the bounds of this particular debate. Power, affluence, security – familiarity with these goods necessarily makes it harder to adjust to their disruption. But that is not a reason to reject power, affluence, or security as goods.

In my last post on this thread, I talked about being tested for Tay-Sachs disease before marriage. Well, it turned out I’m not a carrier, but it didn’t turn out to matter: my wife and I were unsuccessful in our attempts to conceive. After a few years, we decided to adopt. Now, the thing about adoption is that you necessarily have less control than you do when you conceive a child – over the kid’s genes, intra-uterine environment, potentially (depending on whether or not you adopt a newborn) the early childhood environment. But you also have some very direct forms of control. If you suspect this birth mother used narcotics while pregnant – you can politely refuse to pursue that situation. If you hear orphanages in that country have a bad track record in terms of providing an environment that promotes attachment in infants – you can look at other countries. Race, sex, disability – you name it, you have the option to say yes or no, because until you say yes these are not your children and you are not personally responsible for them.

Now: does that mean that exercising this power is wrong? That you should, morally, be indifferent to all of these various factors that will affect your life as a parent, because considering them makes you feel like a shopper? Makes you less-able to accept the child you ultimately wind up with as a gift?

My answer is: no. That is to say: yes, you do feel like a shopper. Yes, that’s kind of an icky feeling. But you just have to deal with it. You have to accept that you do have a choice, and then you have to make a rational choice. Which implies knowing exactly what is really important to you, and what is not as important. If you really are happy with the idea of raising a disabled child, by God, please offer to adopt one – there are plenty waiting for homes. If you really aren’t happy with that prospect, please, don’t adopt one – know yourself well enough to know what you want to take on before you take it on. And then, of course, you may still wind up with the unexpected – and you will need to accept it with grace and love because now the child is yours.

That’s a complicated psychological balancing act – though not as complicated as you might think; the natural process of attachment to an infant really does work wonders at completely erasing all that earlier fretting from your mind. And yes, you could avoid the whole business by foreswearing the power that choice affords. You could not consider adoption at all. Or you could go into adoption as a blind lottery. But I would bet that if society mandated the latter, that more people would opt for the former – to not consider adoption at all. That doesn’t seem to me like an optimal outcome, either for society as a whole or for the children most in need.

I think all of the above applies equally well to the impact of emerging technologies on childbearing. I am much more confident than many New Atlantis readers in the power of natural attachment – notwithstanding the inevitable horrible outliers who will always make headlines, I think the overwhelming majority of parents will always be fiercely attached to their children, however they turn out, and that therefore we just don’t need to fret that much about being unwilling to accept them as gifts once they are here. Having more power, and hence more choices, beforehand can indeed mess with your head – which is why my maxim from my previous piece, “moderation in all things,” still sounds good to me as a starting point.

And moderation is, necessarily, measured against a background of the choices available.



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