Friday, July 21, 2023

Optimizing the children

As I get closer to the end of this pregnancy, I've been thinking more and more about what this little person inside me will actually be like. There are the usual idle thoughts about hair color and sleep patterns, then the more insidious worries about various illnesses that are more common for babies born to older parents. Intellectually I know it's unlikely he will be just like Jonah, either in looks or in temperament, but Jonah is the only little boy I have, so I find myself assuming they will be similar. 

It's easy to forget just how much I do know about this baby. I know an amazing amount about this baby, more than anyone ever knew about their unborn children until just a few years ago. I remain amazed that a simple blood test revealed not only his sex but also whether he carried a number of genetic diseases, and all before I was out of my first trimester. 

Even when I was doing these tests, though, I wasn't entirely sure they were a good idea. Josh and I had decided a long time ago that we wouldn't terminate a pregnancy because of something like Down syndrome. With some other diseases it was harder to imagine what we would decide. But I wasn't sure I really wanted to know in advance. 

When the doctors became concerned about markers for spina bifida, they suggested we get genetic counseling. I still don't understand why, because spina bifida is not a genetic condition. But I met with the woman, mostly because I was curious. She went through all the heritable diseases on our family trees — an exercise that revealed we actually have pretty good genetics. I tried to be polite, but mostly rushed through it so I could get to my actual question: why did we need this counseling when the baby's genetics were already determined and most of the diseases she was asking about had no cure?

Even as I the words left my mouth, I realized that the answer was obvious! The point was to help us determine whether we should be intermingling our genetic material in the first place. Just like the point of genetic testing in your first trimester is to see if you should remain pregnant at all. The point, in other words, is eugenics. Right? A softer, more modern version — a version that happens before you're even born — but eugenics nonetheless. 

In the midst of all this I had a conversation with someone who told me that she would definitely abort an autistic fetus. But there was no prenatal test for that, I said. Not yet, she replied. She didn't know I was pregnant at this point, but I imagine she will feel pretty bad if my baby ends up being autistic. I guess I should just try and forget this conversation ever happened. 

Catholicism has a very good answer to all this, which is that eugenics is wrong in all cases. But if you want to accept that argument, you need to accept everything that comes with it, including the prohibition against all abortion and birth control. I commend the Catholics for being philosophically consistent on these points! But I do not favor the absolute prohibition of abortion or birth control, so I guess I cannot say I am against eugenics in all cases. 

I don't know what other philosophies there are about modern eugenics — everyone else seems either mildly or extremely muddled. The modern position appears to be two-fold: first, abortion for any genetic abnormality is totally fine. Second, for those abnormalities that are not yet identifiable through genetics (autism, obesity, schizophrenia) we should conclude these are not actual illnesses but special gifts to be celebrated. 

I guess most people don't think much about this weird muddled argument because we never end up having to make these decisions. But it's not hard to see that as these tests become easier and cheaper and more advanced, more and more pregnant women will need to figure out if they favor eugenics, and on what grounds. It's a big responsibility. If there is a genetic screening for autism some day, will it no longer be a neurodivergence to be celebrated, but instead, like Down syndrome, something we can eliminate from the gene pool? 

When I was dealing with the genetic testing and genetic counseling, I went back and found an essay by Michael Sandel that I remembered reading many years ago. It's still good:
To appreciate children as gifts is to accept them as they come, not as objects of our design or products of our will or instruments of our ambition. Parental love is not contingent on the talents and attributes a child happens to have. We choose our friends and spouses at least partly on the basis of qualities we find attractive. But we do not choose our children. Their qualities are unpredictable, and even the most conscientious parents cannot be held wholly responsible for the kind of children they have. That is why parenthood, more than other human relationships, teaches what the theologian William F. May calls an "openness to the unbidden."

7 comments:

Miss Self-Important said...

Eugenics, but hilarious: https://news.yahoo.com/meet-elite-couples-breeding-save-100000548.html. If you look up these people, you will find MANY more articles about them and their "strategies." Also videos. Highly recommend.

I don't know how you'd be able eliminate autism through eugenics just at the moment when we are expanding the meaning of autism to include every kind of weirdo. Also, why eliminate the obesity fetus when you can just feed it ozempic? Why eliminate the exotic genetic disease fetus when we've just created the gene therapy for it? Why eliminate the spina bifida fetus when you can do that new surgery on it while it's still in your womb to fix its spine? I think our technological developments are moving at cross purposes in this realm.

Btw, Sandel optimized his own kid.

Julia said...

Is it coincidental that couple looks so much alike, too? Definitely creepy, not sure about hilarious.

I think the impulse to call everyone autistic now is part of this, actually. Since we can't eliminate it (yet) we will make it inclusive, instead. And when we can eliminate it, we probably will, because no one wants a kid who is autistic, regardless of the severity of their autism.

None of these technological advances actually solve the diseases you mention. Surgery in the womb doesn't cure spina bifida, ozempic doesn't cure obesity. The majority of babies found to have spina bifida before birth are aborted in the US and Europe, even though quality of care is highest there. So technological advances in treatment are not outweighed by technological advances in prenatal detection.

Julia said...

Oh, and yes, I'm sure Sandel optimized his own kid. He actually talks in the essay about the difference between acceptance parenting and transformative parenting. So he gives himself an out for "improving" his children, even though he doesn't approve of selecting for their genetics.

Also: I find it useless to judge these types of essays in light of the private lives of their authors. No one ever lives up to their own philosophies.

Miss Self-Important said...

That's true, I hadn't really thought about it as an either/or - elimination or exaggerated social acceptance - but you're right that we do seem to do this with disabilities now. Are these exaggerated responses connected? That is, before any plausible possibility of eliminating autism, we also treated it as a condition that only existed in severe form (other people were just weirdos, not neurologically disordered, or maybe they had Asperger's) and was thus to be pitied but not celebrated. Now we can't pity anyone, so we either have to awkwardly "celebrate" them or eliminate them? We notably do not do this with diseases like cancer. We just want to cure that, not celebrate it or eliminate the people who have it. Where is the line and what is its logic?

I guess that's right that the medical "fixes" for these genetic problems are incomplete, but I wonder if it also matters how you're conceiving. Bc to use any of these genetic selection technologies (other than abortion), you have to do IVF. And IVF, whether you do it for genetic selection purposes or just as infertility treatment, almost always results in options - you have 2 or 3 or 10 embryos, which one do you want to transfer? This whole way of getting pregnant involves calculating and eugenic selection at some basic level, so adding this more overtly eugenic element is only a change of degree, isn't it?

When you conceive naturally, you have zero control. By the time you find out there is a problem, it's already too late to make an alternative choice (other than abortion), as your genetic counseling experience demonstrates. And if you find out that your baby has a heightened risk or even a certainty of some disorder, I think you'd be more incline to prefer even an imperfect treatment if there is one to an abortion, at least for milder impairments like spina bifida or obesity. (Personally, I am one of the confused women in your post who isn't sure where to draw the line about acceptable eugenic abortion. I think aborting for something like Tay-Sachs is acceptable.) You're already pregnant, the baby is already real, and even if you're a total efficiency maximizer with no concerns about serially aborting imperfect babies, you know that aborting and trying again may not work or lead to a better future outcome. You don't have infinite time to keep trying for a perfect fetus, and most women are not hyper-fertile.

So I could maybe foresee a future where most affluent/educated couples will simply try to conceive exclusively through IVF so as to have pre-emptive control over genetic selection (like this weirdo eugenicist robot couple), in which case, yes, people will choose to eliminate all these conditions. But this is very expensive and inconvenient and women have to inject tons of hormones into their asses for months to do it. Natural conceptions is way easier! So it's hard to imagine that we will simply abandon the natural mode out of eugenic panic. (At the very least, there will still be accidents!) But who knows!

There is also the problem of relative difference. You can narrow the range of possible human phenotypes by eliminating major disorders, but won't this only make smaller differences between people more noticeable and significant? Like if we optimize human intelligence somehow so that everyone with an IQ under 100 or something is simply eliminated, the people with the 110 IQs will be the new "cognitively disabled," won't they?

Sandel very acutely fails to live up to his public principles though. There is a running joke in his dept that he wrote his diatribe against meritocracy after he failed to get his son nepotistically hired at his own institution. (His wife already works there.) Of course, lots of people are like this, I am just venting my specific ire at him.

Julia said...

I don't really know where the line is or what the logic is: I too am one of the confused people! (I would also seriously consider abortion with a diagnosis like Tay-Sachs, despite all my qualms.)

I think cancer totally fits the mold here, actually. First, we are all being told constantly that we could get cancer AT ANY TIME. We cannot smoke, or drink alcohol or diet coke, or have gas stoves or indoor fireplaces, or use plastic plates, or do pretty much anything at all because of CANCER. It is now totally accepted that everyone is going to get cancer at some point if they live long enough, just like we are all a little bit autistic now.

But it is also pretty clear that cancer has a genetic component. If it were easy to test for predisposition to cancer in the womb with a high degree of certainty, then I bet people would abort for it. Same with obesity and autism and bipolar disorder, etc, etc, etc.

You are right that selecting for these traits either requires a definitive prenatal test and abortion OR a definitive embryonic test and IVF. For most of these traits, we don't have definitive tests, so it's a hypothetical question at this stage. Though your creepy natalists apparently selected their daughter based on predisposition for obesity, migraines, and anxiety, so we're already seeing it at the margins.

I'm not saying we are all going to be doing this anytime soon, just that it seems like it might be possible in the near-ish future. We've already done it with Downs and Tay-Sachs and spina bifida, and yet people don't seem to really think about it as eugenics. They just think about it as, well, optimizing their children. Who wants a fat daughter with bipolar disorder? A lot of people would think it's better to try again if you can, right? They would probably think they were doing the kid a favor, right?

Also, yes, the result here is that if we did eliminate all of these diseases or deficiencies then we would just be narrowing the scope for comparison. This is a classic insight from Tocqueville, I think: as we become more and more similar in the age of equality, we become less and less tolerant of any inequalities, real or perceived. The result is that we strive to become more and more similar to one another. This type of eugenics is just one example of that impulse.

Miss Self-Important said...

I guess yeah, people are always freaking out over causes of cancer and pressing for their elimination, but we don't speak of trying to eliminate people with cancer. Those we just want to cure. And we certainly don't celebrate having cancer as a beautiful human difference in the way we do with various disabilities. I don't think that's just bc cancer is fatal and most disabilities aren't, b/c some disabilities are fatal, and we are still encouraged to celebrate people with them. True that for those cancers whose genetic basis we can identify, we would discard those embryos or maybe even abort, but we are not even close to identifying the genetic basis of the majority of cancers, so cancer still looms as a scientifically unsolvable threat for our lifetimes (this could change, but I think that is how it lives in our imaginations now) and I think we regard it with the traditional mix of dread and pity that we used to regard these other conditions with in the past, before we turned towards the "celebrate or eliminate the people" binary.

I don't know, I think the "abort and try again" logic makes sense for a very utilitarian sort of person, but only up to a point. If you start trying to have a family at 23, ok, you have time and many chances to keep trying. But most of the women who take this child optimizing approach to family are already delaying childbearing until their mid to late 30s, and there actually aren't that many cycles left for them to keep trying. Your chances of an "unproblematic" fetus are going down fast anyway, each abortion is a lost 3-5 months (assuming you abort around 6-10 wks, when they do the genetic testing, you then lose another month at least on birth control and then however long it takes to recover your normal ovulation cycle, which varies), and there's no guarantee that the next pregnancy will even happen, no less be more perfect than this one. Serial abortions are just not a very reliable option at this juncture. Even two such abortions will take almost a year to deal with, and that's assuming you get pregnant with the second one immediately after recovering from the first one.

Of course, if you just do IVF, it's way faster and more efficient (assuming no underlying fertility issues), which is why I'd assume that couples really committed to optimization would go that route, like these creeps I linked. But then, regardless of your ideas about eugenics, the chasm b/w natural conception and IVF is so big now that I think even a lot of people who might otherwise favor optimization won't go for it b/c they will try to conceive naturally first, and then they'll be hesitant to pursue serial abortion in the face of relatively manageable impairments detected in genetic testing.

But maybe that's just me! I would not abort a kid with spina bifida, I don't think, largely b/c getting pregnant at this point for me is harder and I don't know if I would be able to afford, time-wise, to try again. (Also such an abortion would be illegal in TX, but I guess I could go elsewhere if I was determined.) So better that than nothing if I want a third kid. But on the other hand, I guess I could, as a eugenicist, also reason that since I already have two, better the two I have than two plus a non-optimal third. On the THIRD hand, the two I have are almost certainly non-optimal in ways that I don't even know about yet b/c they have yet to disclose themselves, so maybe the devil you know is no worse at least than the devil you don't know... Also, what if *I* am also non-optimal...? Really hard to weigh all these considerations rationally even when you're trying to rationally optimize.

Julia said...

Yeah, true, and no one is suggesting we eliminate people with Downs syndrome, either! That would be Nazi-style eugenics, which everyone agrees is murder. I'm not saying we are doing that, or that anyone wants to do that. But people in wealthy countries are, nevertheless, aborting fetuses with Downs (and some other non-fatal disabilities, like spina bifida) at a substantial rate. In some places, Downs has nearly disappeared! I see no reason to think that this same impulse to avoid genetic deficiencies would not apply to cancer or autism, if we had clear prenatal tests for those diseases.

I would agree that it's utilitarian. I'm not saying I would do it, or that you would do it, or even that most people would do it. (Though most people do seem to do it, at least for the diseases that we can currently screen for.) All I'm saying is that I'm taken aback by how widely practiced this kind of soft eugenics is now, given how advanced prenatal testing has become. And I'm surprised that no one wants to admit that it actually is eugenics.

While we're not murdering people with disabilities, we ARE using prenatal testing and abortion as a way to make sure people with disabilities are not born at all. I am troubled by this. That is all.