I think the reason that people use the same term for both is that historically, the lines between enabling, encouraging, recommending, de facto enforcing, legally enforcing and plain violently enforcing genetic changes have been rather fluid. It never started with enforcing it, but it tended to end up there.
For sterilisation campaigns in India, they didn’t force the people, per se, at first. They offered sterilisations. When people weren’t interested, they offered implanting reversible reproductive devices and getting a free radio as a gift as an incentive. And then when people got confused about whether they had elected something reversible or not, they left them confused, and went for sterilisation. And years later, the people wanted their reproductive device removed so they could now start a family, and found they were infertile, when they had never given informed consent.
When people found a way to detect down syndrome in the womb, and encouraged women to test for it, with the explicit goal of reducing down syndrome, and enabled them to abort if they found it, people started doing so. 90 % of them abort when they learn that the child has down syndrome. (Notably, of the parents who have children with down syndrome, nowhere near 90 % wish they had aborted the child, and the children lead very happy lives.) This has led to the condition being de facto eradicated in many areas. And for the parents of children with this condition nowadays, the situation has changed. They are increasingly asked why they didn’t get rid of it, when they could have, and saved everyone the trouble. Well, people said, down syndrome is really serious, and really quite bad (not that the people with down syndrome agree), so this is okay. - But now, these tests are also turning up for dwarfism. Then for cleft lips. Are those parents going to soon be asked why they needlessly confronted us with a kid who does not match beauty standards, and needed an unnecessary minor surgery?
In the early Hitler propaganda movies, the subject of the movie is a woman who has a horrible, painful, incurable disease. Her loving husband tries everything to heal it, but cannot. She says she is confident he will save her from this horrible fate, all the same. He poisons her. She says yes, this is what she secretly wanted and he read her mind, and she dies, grateful. The resulting court case in the movie has people say of course, if sick people want to live, this must be permitted, but a right to die is important, is it not? - The movie is moving, and I found myself agreeing with a lot of it. Yet that story ended in real life with kids with disabilities being gassed to death.
In your own writing, you had somebody comment, saying it should actually be a moral obligation to perform embryo selection for all who had the financial means. Your response was not “that would be a different evil thing, no”. It was “I’m not quite sure I would agree with this yet, though I can see the case being made for it.”
If you want a different word for this, please also state how you intent to ensure, in the long run, that the freedom not to use this tech is maintained. Not just as a theoretical legal right, but in practice. That this won’t end with us standing in a classroom, and the teacher saying, in disgust, I cannot believe this child was not deselected, so I wouldn’t have to deal with this neurodivergent mess.
I think the reason that people use the same term for both is that historically, the lines between enabling, encouraging, recommending, de facto enforcing, legally enforcing and plain violently enforcing genetic changes have been rather fluid. It never started with enforcing it, but it tended to end up there.
Was there even a way to do voluntary eugenics before embryo selection? I guess maybe paying people to have more kids or fewer kids might count. But the options were pretty limited.
In your own writing, you had somebody comment, saying it should actually be a moral obligation to perform embryo selection for all who had the financial means. Your response was not “that would be a different evil thing, no”. It was “I’m not quite sure I would agree with this yet, though I can see the case being made for it.”
There is a difference between a moral obligation and a legal one. I think people have a moral obligation to donate money to cost-effective charities, but I also support their right not to do that.
The difference is understanding there ought to be a limit on how the state can be used to enforce other people to comply with your moral standards.
Also, as I already said I don’t think this technology is yet cost-effective enough to warrant such a moral obligation.
Yet that story ended in real life with kids with disabilities being gassed to death.
You seem to be implying that there is somehow a direct causal link between films arguing for a right to die and the holocaust. I don’t think that slope is as slippery as you portray it. There are plenty of people nowadays advocating for the right to die who don’t believe in killing disabled people.
And again, that’s not even what I’m arguing for. I’m merely arguing that parents should have the right to give their children better genetics so long as those changes have at least some benefit to the well-being of the child.
There are of course always going to be some traits that are on the borderline of what we might consider ethically permissible. For example, should deaf parents be allowed to purposefully have a deaf child? I lean towards yes, particularly if the child can choose to reverse the condition with some kind of implant or medical procedure later in life.
If you want a different word for this, please also state how you intent to ensure, in the long run, that the freedom not to use this tech is maintained. Not just as a theoretical legal right, but in practice. That this won’t end with us standing in a classroom, and the teacher saying, in disgust, I cannot believe this child was not deselected, so I wouldn’t have to deal with this neurodivergent mess.
To be frank, I have thought less about these kinds of issues because I am so worried about AI. In my mind, the greatest benefit of this technology is it might provide the human species with individuals capable of guiding us through the incredible technologically-induced upheavals we are likely to see over the next century. My greatest fear is that we simply are not going to have enough time for these children to grow up. Next to that, worries about discrimination in the classroom or workplace have seemed relatively minor.
Still, it deserves to be addressed. I don’t think you’re going to see the effect you’ve described without something stronger than simple embryo selection. By itself, embryo selection maxes out at about 1 standard deviation of gain on IQ. That will have a very noticeable impact, but given you’ll be selecting on other traits besides just IQ, children born with its benefits will just appear to be unusually talented. The difference won’t be big enough to mark them as like fundamentally different.
Even if you get in-vitro gametogenesis working, you’d max out at maybe 22 IQ points.
Of course the goal is to eventually get iterated CRISPR or chromosome selection or some other advanced techniques to work that would be truly transformative. But it will take quite some time for this tech to be scaled out to the point where selected children become the majority of new births. I would guess at least 40 years and possibly longer.
The only way I can see that happening is if we manage to put a global moratorium put in place on AI research and the improvement of computer hardware. But if we did manage to coordinate on such a wise proposal, I suspect it would be lifted when we figure out how to make an aligned ASI that acts in the bests interests of humans in general. It seems likely that we will solve that with a bunch of genetically enhanced geniuses around to work on the problem.
For the short window during which this might be a problem though, there are a couple of ways to deal with it:
Have different schools for kids of roughly similar abilities. This is already standard practice in many countries such as Vietnam.
Introduce universal basic income to ensure that no one ends up truly destitute due to genetic predispositions that are no fault of their own
Once embryo selection or whatever technique we’re talking about is cost-effective enough, subsidize access with government funds so that parents will never be denied access due to financial constraints. The same logic that compels us to fund public schools would also compel us to subsidize access to this tech if it is cost-effective enough; society as a whole has a strong interest in ensuring the next generation is healthy and productive.
90 % of them abort when they learn that the child has down syndrome. (Notably, of the parents who have children with down syndrome, nowhere near 90 % wish they had aborted the child, and the children lead very happy lives.)
Can you link to the sources for both claims? The percentage seems too exact.
Current data and especially data for the US in particular (which I assume is your interest) is harder to assess—it isn’t tracked everywhere. Found an article linking all this and trying to deduce them, and they ended up with significantly lower figures, more in the 65 % aborted ballpark (ballpark being the stressed term here) : https://lozierinstitute.org/new-study-abortion-after-prenatal-diagnosis-of-down-syndrome-reduces-down-syndrome-community-by-thirty-percent/#_edn but it is also a lot of guesswork, and outdated. It is complicated by the fact that your can lose a down pregnancy for other reasons, as well—and also by the fact that if you ask people if they hypothetically would abort for a positive they consider very unlikely, they answer much more in denial (23%-33%) than if you actually give them a positive test, at which point choosing to abort skyrockets to 89%-97%. https://onlinelibrary.wiley.com/doi/10.1111/j.1542-2011.2011.00109.x
Most recently, the case of Iceland made headlines, because it became apparent that the condition has essentially vanished there as a consequence of prenatal screening, which is strongly encouraged there. There is no explicit pressure to abort if your fetus has down syndrome, and you are given all the opportunities for an informed decision, and there are still some women who either refuse the screening, or keep the child anyway, so Iceland felt very misrepresented by most of the headlines, though their rebuttal didn’t conclude final numbers—read like ballpark 85 % people screening, and for positive screens, ballpark 80-85 % of positives leading to abortions, though they left it deliberately ambiguous. As they felt misrepresented, here is their own presentation of the situation: https://icelandmag.is/article/fact-check-no-iceland-not-systematically-eradicating-down-syndrome Even that seemed to amount to only 1-3 kids still having it per year, so frankly, I get the “disappearing” accusation. Similar picture in Denmark.
On the other end of this, if you talk to parents who actually had kids with down syndrome (which often come as surprises, still—the tests are not perfectly accurate, and not everyone does them), you get a startlingly different picture: “Of the 2,044 respondents, 99% reported that they love their son or daughter; 97% were proud of them; 79% felt their outlook on life was more positive because of them; 5% felt embarrassed by them; and 4% regretted having them. The parents report that 95% of their sons or daughters without Down syndrome have good relationships with their siblings with Down syndrome. The overwhelming majority of parents surveyed report that they are happy with their decision to have their child with Down syndrome and indicate that their sons and daughters are great sources of love and pride.” https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3353148/#:~:text=The%20overwhelming%20majority%20of%20parents,sources%20of%20love%20and%20pride.
I do think though, that we can agree that the amount of people who abort when they are warned of it is much higher than the percentage of people who are unhappy they got their surprise down syndrome kid?
And that makes me wonder how many other conditions that would be true for. How many people would still select the embryo that is gay? I fear only very few. And would choosing against them make the world a better place? I doubt it.
“Eugenics” means “good genes”. It was always intended as a good thing. The people who came up with it, and people independently have, many times, I do think they wanted a better world. Less poverty. Better health. Practically none began their efforts with force. And yet, there are so many historic examples that tried to implement it, which people think ended up in a very scary place.
If this article wants to rename eugenics because they think what they have now is totally different and safe and won’t cause the same horrors in the long run, they need to explain why. Otherwise it is just a rebranding.
...and also by the fact that if you ask people if they hypothetically would abort for a positive they consider very unlikely, they answer much more in denial (23%-33%) than if you actually give them a positive test, at which point choosing to abort skyrockets to 89%-97.
“Of the 2,044 respondents, 99% reported that they love their son or daughter; 97% were proud of them; 79% felt their outlook on life was more positive because of them; 5% felt embarrassed by them; and 4% regretted having them. The parents report that 95% of their sons or daughters without Down syndrome have good relationships with their siblings with Down syndrome. The overwhelming majority of parents surveyed report that they are happy with their decision to have their child with Down syndrome and indicate that their sons and daughters are great sources of love and pride.”
If the first part is true, doesn’t that also apply to the second par? Where the reported rate would be much different from the true sentiments as revealed by actual decisions?
I do not see how that follows? The hypothetical, feared thing has actually happened, and they find it to be a lot less awful than they thought—they actually find that once they get the support and information they need and process the information, they are very happy. There always seems to be an initial shock, fear and overwhelm, but it appears that that tends to pass relatively quickly.
We could imagine a pressure to pretend to love your kid, as that is common, leading to an underreporting of regret.
But in that case, we could compare reports from parents of kids with Down syndrome being regretful with parents of kids without the syndrome being regretful.
In this context, the study “Regretting motherhood” comes to mind.
Can’t find a version without a paywall, and it is qualitative research (I assume because lies are so expected), so we have no straightforward numbers to compare (unless she details the recruitment process?), but the summary of her interviews suggests that regret was not correlated with the health and personality of the children, but with whether the woman herself wanted children in general. If the woman did not want to become a mother, the child being healthy and lovely did not change that. But if she did want to become a mother, a child with Down syndrome still brought happiness.
Another thing one could look into is kids given up for adoption. This is certainly more common with Down syndrome in countries where the parents are poor, and receive no support with medical problems, and experience a lot of discrimination. Which is how these kids end up adopted out to families in countries with a decent security net and less discrimination.
There are also adoptions within the US; people whose kids have Down syndrome wanting to adopt them out, others wanting to adopt them, and parents who considered adopting them out, but kept them. Reading the reports, a recurring theme is that the parents are initially extremely fearful and aversive, but upon spending time with kids who have the condition and their parents, their opinion often changes.
Here is one of a woman who adopted out—the text makes it clear she grew very fond of the child after birth, but didn’t think her life situation would make it possible for her to support a special needs child (she had only just met the father, they didn’t want a long term relationship, etc.) Again, decent social support seems to make a difference; the concern isn’t that they won’t love the child, but that they won’t manage to give it the support it needs https://www.ndsan.org/adoption-stories/i-made-an-adoption-plan/story-2/
No matter how you turn it—there seems to be a significant discrepancy between the number of parents who would chose against a child with down syndrome immediately and without any first hand experience, and those who have them and tend to actually be glad.
if your confused about the meaning of my comment, the accuracy of the numbers given in the quoted text:
Of the 2,044 respondents, 99% reported that they love their son or daughter; 97% were proud of them; 79% felt their outlook on life was more positive because of them; 5% felt embarrassed by them; and 4% regretted having them. The parents report that 95% of their sons or daughters without Down syndrome have good relationships with their siblings with Down syndrome
… sound like wishful thinking as much as the wishful thinking revealed in your point:
...and also by the fact that if you ask people if they hypothetically would abort for a positive they consider very unlikely, they answer much more in denial (23%-33%) than if you actually give them a positive test, at which point choosing to abort skyrockets to 89%-97.
i.e. If the reader accepts that the “23%-33%” is bogus then the “99%, 97%, etc.” would also be bogus for the same reasons.
For the change in mind when the question on abortion goes from hypothetical and abstract to imagined acutely now, one can easily imagine an explanation—that people, for the first time, think through the implications of actually having a disabled kid right now, with their current finances and jobs and obligations, and feel utterly overwhelmed at not thinking about handling this one day maybe, but handling it right now, when it is not what they were expecting at all.
But later, they have had the child, their position has fundamentally changed, they know a lot more, they actually know what it is like after the initial shock, how much of their fear was rooted in ignorance and stereotypes. Yes, their position has also changed in that getting rid of the child is now more difficult, so there may well be a phenomenon where they accept a position that is hard to change and talk themselves into liking it. But this is true of all parents. And yet, among down syndrome children, the result does not seem that different.
If they said that yes, keeping the child with the condition was in fact awful, I find it plausible that they would be judged less than parents of children without the syndrome, who tend to get hell for saying they regret their children’s birth, so the pressure to lie would be less. After all, the numbers above suggests that the people who ask you would likely abort such a child themselves, so who are they to judge a person for not being happy with such a surprise child? And yet, the parents of kids with the syndrome generally do not express persistent regret—and they are so convincing in their statements that after talking to them, and seeing them with their kids, many prospective parents decide to keep the baby, or adopt a child with this condition. And the parents who make these statements sometimes end up adopting an additional child with down syndrome. I can’t imagine why they would do that if they didn’t mean it, noone is expecting them to. This is also consistent with the general finding that aversion to having a disabled child is higher if you have spent less time with disabled children—when you actually interact with them, and get more data and experience, you find they are not what you expected.
Like, seriously, listen to such parents and their kids and judge yourself if it looks like they are all lying. It is common to assume that they must be lying or delusional before engaging with them, because people who have no exposure to disabled folks often cannot imagine being genuinely happy with them. But it really looks like this changes when you actually meet them. They do, very honestly, state that their initial reaction was shock, grief, devastation, but trace how that changed over time.
Thanks for such a high quality comment. I’ve heard that the termination rate for Down Syndrome pregnancies varies by country. For example, I’ve heard it’s higher in most European countries than in America.
And that makes me wonder how many other conditions that would be true for. How many people would still select the embryo that is gay? I fear only very few. And would choosing against them make the world a better place? I doubt it.
I don’t think everyone is going to make the same choice here. I suspect some parents would select for greater chance of same-sex attraction and some will select against it. Though I suspect that in most cases parents are just going to care much more about other traits so it won’t be selected very strongly either way.
I am reasonably certain that most conservatives and religious people would select against queer kids. Look at the effort they go to to make sure kids do not know that being trans or gay is even an option, stopping teachers from mentioning their gay partners. The attempts to pray, or electrocute, the gay away. The search for a cause of gayness so it can be prevented.
Yet very few gay people want to know the gay gene(s) (if there are any) so they can have more gay kids. There are a lot of hetero cis people trying to make their kids hetero and cis, but I have yet to encounter a queer person who is actively trying to make their kid queer. Give them options, yes. Raise them open-minded and informed, yes. But make them queer? Discourage them from being cis and hetero when they actually are? Have never seen it. Many queer people, despite being happy and proud, remember the pain discrimination caused them, the times they were beaten up, the fight for medical care, the flats where they were denied, the things thrown against their door. They don’t want to force queer kids into the closet, they want them to be out and proud. But they are often relieved when the kids are straight. If they could make their kids gay, I still highly doubt they would. If they could make them not be, I think a few would take that offer.
Amongst the liberals, I’d expect it to not to go either way that much—I think that would mostly play out like you imagine, with them caring primarily about other things, though I suspect there would still be a slight bias against. My mom is very liberal, and very accepting of me now, and adores my partner, speaks of us proudly, is perfectly happy with it now. But her initial reaction when I told her I was queer was very negative. She was very upset. She tried to talk me out of it, bizarrely. She said she was upset because she thought this meant my life would be harder. Despite living in one of the most liberal countries in the world, in a city with a huge queer scene, with queer people in politics and art everywhere. Similarly, when as a young person assigned female, I would not stop growing, my mum put me on hormones to stop that. She said I was getting too big for a girl, that I would not find a husband that way. She wanted to help, I am sure. I resent it massively. I’m borderline inter, I identify as non-binary, my partner specifically loves me being tall, being tall has been advantageous for me in my hobbies, and the hormonal intervention messed up my hormones, and may well have contributed to life-long problems. We also have a long history in my country of blatantly intersex children being born, and then assigned a binary gender at birth, and being surgically modified to look like it, undergoing unnecessary and non-consensual surgery that goes so freaking far beyond what I experienced, and not being told later. Because the parents wanted to save their kids the pain of not being normal. For the inter people involved, this is awful, because they have healthy tissue that would have given them pleasure cut away to fit a norm, while failing to give them any reproductive function; they are just made to fit a mould.
So I do not think queer people would disappear in the first generation.
But I do think they would be fewer, not equal or more.
And that raises an interesting question for future generations.
After a while, some trans clinics will increasingly close for lack of need, leaving the remaining trans kids having to travel far and deal with loopholes and lost forms and unclear rules and secondary jobs for doctors. There will be increasingly less need to cover queer topics in school if none of the kids are queer, it will seem pointless for so few people. Fewer people will want to organise or attend a pride parade. The gay bars will go broke. The gay dating pool will shrink. People who are bi will have less chance to discover it. More people will stay in the closet. Fewer people will be potential queer partners, period.
I mentioned the case of Down syndrome going extinct in Iceland above—mostly because I have been very touched by stories of parents with disabled children saying that it feels like the world is increasingly hostile to them, with support facilities closing, people not being educated, them being stared at more, people questioning why these kids are there.
I am haunted by a text I read by a mother of a disabled child. She said people kept seeing her kid and saying “oh how tragic, didn’t you know before?” And she would say, before the birth? Yes, she had known. The people would then go “Oh, but it couldn’t be fixed?” She would answer in confusion, well, no, it could not be operated on in the womb yet, only post-birth, and by then, parts of the results of the oxygen deprivation were irreversible; that the child was getting lots of therapy now and getting better and was happy, but would likely never entirely catch up. Then there would be an awkward silence. She eventually realised they weren’t asking why the kid had not been fixed. They were asking why the kid had not been aborted. Why she had allowed her daughter into the world. Her daughter, happily smiling, beloved, just existing and bringing joy, oblivious to the debate as to why her existence had been permitted at all.
There is nothing inherently bad about being queer, and queer people in accepting, supportive societies in which they are seen as normal and not alone and they have a thriving subculture are very happy.
But would a queer person be as happy if they are a rarity noone understands, with no structures for them, no subculture community, no partners? I doubt it.
Similarly, would a deaf person be happy in a society that has no sign language, no mandatory subtitles, no deaf community and culture, in which they are the only one? I doubt it, and yet think of Beethoven still composing while deaf, stranded alone; Stephen Colbert filling our homes with laughter while deaf on one ear.
Would a wheelchair bound person be happy in a world without ramps and accessible toilets? If the disability would have been known before birth, and yet the mother kept it, are they going to bill the mother and child for building a ramp into the school, which noone else needs? And yet I think of the beautiful physics Stephen Hawking has written while wheelchair bound.
I suspect the process of reducing unusual people with unusual needs would be self-accelerating. Queer people will have an increasingly bad time, and wanting to save their kids from an issue so big and systematic that they do not know how to fix it, would want to spare them from it.
Like I said—I do not think the individuals making choices in such systems mean to do a bad thing at all. Yet the changes to society that results are very scary, and I do not want them.
I do think though, that we can agree that the amount of people who abort when they are warned of it is much higher than the percentage of people who are unhappy they got their surprise down syndrome kid?
Is this because people predict accurately whether they’d like a Down kid, or because everyone thinks it’s bad but it’s actually pleasant?
Or some middle ground. Taking all percentages at face value, my first guess is that there is some social pressure to avoid birthing Downs, so people over-abort, and those who do not are defiant because they are quite sure, in the right, that they are totally fine with a Down kid, so they end up with a high rate of happiness. This is compatible with aborting being the right choice for most people.
Rephrase:
Most people are better off aborting the Down.
A few people are not.
The majority sets the social pressure.
People in the grey area default to aborting due to such social pressure.
The non-aborters are thus only those who are sure enough of what they to not follow social pressure.
Thus the non-aborters are a very well selected group of people actually better off with their Down kid.
I think the reason that people use the same term for both is that historically, the lines between enabling, encouraging, recommending, de facto enforcing, legally enforcing and plain violently enforcing genetic changes have been rather fluid. It never started with enforcing it, but it tended to end up there.
For sterilisation campaigns in India, they didn’t force the people, per se, at first. They offered sterilisations. When people weren’t interested, they offered implanting reversible reproductive devices and getting a free radio as a gift as an incentive. And then when people got confused about whether they had elected something reversible or not, they left them confused, and went for sterilisation. And years later, the people wanted their reproductive device removed so they could now start a family, and found they were infertile, when they had never given informed consent.
When people found a way to detect down syndrome in the womb, and encouraged women to test for it, with the explicit goal of reducing down syndrome, and enabled them to abort if they found it, people started doing so. 90 % of them abort when they learn that the child has down syndrome. (Notably, of the parents who have children with down syndrome, nowhere near 90 % wish they had aborted the child, and the children lead very happy lives.) This has led to the condition being de facto eradicated in many areas. And for the parents of children with this condition nowadays, the situation has changed. They are increasingly asked why they didn’t get rid of it, when they could have, and saved everyone the trouble. Well, people said, down syndrome is really serious, and really quite bad (not that the people with down syndrome agree), so this is okay. - But now, these tests are also turning up for dwarfism. Then for cleft lips. Are those parents going to soon be asked why they needlessly confronted us with a kid who does not match beauty standards, and needed an unnecessary minor surgery?
In the early Hitler propaganda movies, the subject of the movie is a woman who has a horrible, painful, incurable disease. Her loving husband tries everything to heal it, but cannot. She says she is confident he will save her from this horrible fate, all the same. He poisons her. She says yes, this is what she secretly wanted and he read her mind, and she dies, grateful. The resulting court case in the movie has people say of course, if sick people want to live, this must be permitted, but a right to die is important, is it not? - The movie is moving, and I found myself agreeing with a lot of it. Yet that story ended in real life with kids with disabilities being gassed to death.
In your own writing, you had somebody comment, saying it should actually be a moral obligation to perform embryo selection for all who had the financial means. Your response was not “that would be a different evil thing, no”. It was “I’m not quite sure I would agree with this yet, though I can see the case being made for it.”
If you want a different word for this, please also state how you intent to ensure, in the long run, that the freedom not to use this tech is maintained. Not just as a theoretical legal right, but in practice. That this won’t end with us standing in a classroom, and the teacher saying, in disgust, I cannot believe this child was not deselected, so I wouldn’t have to deal with this neurodivergent mess.
Was there even a way to do voluntary eugenics before embryo selection? I guess maybe paying people to have more kids or fewer kids might count. But the options were pretty limited.
There is a difference between a moral obligation and a legal one. I think people have a moral obligation to donate money to cost-effective charities, but I also support their right not to do that.
The difference is understanding there ought to be a limit on how the state can be used to enforce other people to comply with your moral standards.
Also, as I already said I don’t think this technology is yet cost-effective enough to warrant such a moral obligation.
You seem to be implying that there is somehow a direct causal link between films arguing for a right to die and the holocaust. I don’t think that slope is as slippery as you portray it. There are plenty of people nowadays advocating for the right to die who don’t believe in killing disabled people.
And again, that’s not even what I’m arguing for. I’m merely arguing that parents should have the right to give their children better genetics so long as those changes have at least some benefit to the well-being of the child.
There are of course always going to be some traits that are on the borderline of what we might consider ethically permissible. For example, should deaf parents be allowed to purposefully have a deaf child? I lean towards yes, particularly if the child can choose to reverse the condition with some kind of implant or medical procedure later in life.
To be frank, I have thought less about these kinds of issues because I am so worried about AI. In my mind, the greatest benefit of this technology is it might provide the human species with individuals capable of guiding us through the incredible technologically-induced upheavals we are likely to see over the next century. My greatest fear is that we simply are not going to have enough time for these children to grow up. Next to that, worries about discrimination in the classroom or workplace have seemed relatively minor.
Still, it deserves to be addressed. I don’t think you’re going to see the effect you’ve described without something stronger than simple embryo selection. By itself, embryo selection maxes out at about 1 standard deviation of gain on IQ. That will have a very noticeable impact, but given you’ll be selecting on other traits besides just IQ, children born with its benefits will just appear to be unusually talented. The difference won’t be big enough to mark them as like fundamentally different.
Even if you get in-vitro gametogenesis working, you’d max out at maybe 22 IQ points.
Of course the goal is to eventually get iterated CRISPR or chromosome selection or some other advanced techniques to work that would be truly transformative. But it will take quite some time for this tech to be scaled out to the point where selected children become the majority of new births. I would guess at least 40 years and possibly longer.
The only way I can see that happening is if we manage to put a global moratorium put in place on AI research and the improvement of computer hardware. But if we did manage to coordinate on such a wise proposal, I suspect it would be lifted when we figure out how to make an aligned ASI that acts in the bests interests of humans in general. It seems likely that we will solve that with a bunch of genetically enhanced geniuses around to work on the problem.
For the short window during which this might be a problem though, there are a couple of ways to deal with it:
Have different schools for kids of roughly similar abilities. This is already standard practice in many countries such as Vietnam.
Introduce universal basic income to ensure that no one ends up truly destitute due to genetic predispositions that are no fault of their own
Once embryo selection or whatever technique we’re talking about is cost-effective enough, subsidize access with government funds so that parents will never be denied access due to financial constraints. The same logic that compels us to fund public schools would also compel us to subsidize access to this tech if it is cost-effective enough; society as a whole has a strong interest in ensuring the next generation is healthy and productive.
Can you link to the sources for both claims? The percentage seems too exact.
I encountered the 90 % of diagnosed down fetuses being aborted claim all over the internet many times, and digging it up, it seems to go back to an older European literature review (where it was specifically 92 %). https://obgyn.onlinelibrary.wiley.com/doi/10.1002/(SICI)1097-0223(199909)19:9%3C808::AID-PD637%3E3.0.CO;2-B
Current data and especially data for the US in particular (which I assume is your interest) is harder to assess—it isn’t tracked everywhere. Found an article linking all this and trying to deduce them, and they ended up with significantly lower figures, more in the 65 % aborted ballpark (ballpark being the stressed term here) : https://lozierinstitute.org/new-study-abortion-after-prenatal-diagnosis-of-down-syndrome-reduces-down-syndrome-community-by-thirty-percent/#_edn but it is also a lot of guesswork, and outdated. It is complicated by the fact that your can lose a down pregnancy for other reasons, as well—and also by the fact that if you ask people if they hypothetically would abort for a positive they consider very unlikely, they answer much more in denial (23%-33%) than if you actually give them a positive test, at which point choosing to abort skyrockets to 89%-97%. https://onlinelibrary.wiley.com/doi/10.1111/j.1542-2011.2011.00109.x
Most recently, the case of Iceland made headlines, because it became apparent that the condition has essentially vanished there as a consequence of prenatal screening, which is strongly encouraged there. There is no explicit pressure to abort if your fetus has down syndrome, and you are given all the opportunities for an informed decision, and there are still some women who either refuse the screening, or keep the child anyway, so Iceland felt very misrepresented by most of the headlines, though their rebuttal didn’t conclude final numbers—read like ballpark 85 % people screening, and for positive screens, ballpark 80-85 % of positives leading to abortions, though they left it deliberately ambiguous. As they felt misrepresented, here is their own presentation of the situation: https://icelandmag.is/article/fact-check-no-iceland-not-systematically-eradicating-down-syndrome Even that seemed to amount to only 1-3 kids still having it per year, so frankly, I get the “disappearing” accusation. Similar picture in Denmark.
On the other end of this, if you talk to parents who actually had kids with down syndrome (which often come as surprises, still—the tests are not perfectly accurate, and not everyone does them), you get a startlingly different picture: “Of the 2,044 respondents, 99% reported that they love their son or daughter; 97% were proud of them; 79% felt their outlook on life was more positive because of them; 5% felt embarrassed by them; and 4% regretted having them. The parents report that 95% of their sons or daughters without Down syndrome have good relationships with their siblings with Down syndrome. The overwhelming majority of parents surveyed report that they are happy with their decision to have their child with Down syndrome and indicate that their sons and daughters are great sources of love and pride.” https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3353148/#:~:text=The%20overwhelming%20majority%20of%20parents,sources%20of%20love%20and%20pride.
I do think though, that we can agree that the amount of people who abort when they are warned of it is much higher than the percentage of people who are unhappy they got their surprise down syndrome kid?
And that makes me wonder how many other conditions that would be true for. How many people would still select the embryo that is gay? I fear only very few. And would choosing against them make the world a better place? I doubt it.
“Eugenics” means “good genes”. It was always intended as a good thing. The people who came up with it, and people independently have, many times, I do think they wanted a better world. Less poverty. Better health. Practically none began their efforts with force. And yet, there are so many historic examples that tried to implement it, which people think ended up in a very scary place.
If this article wants to rename eugenics because they think what they have now is totally different and safe and won’t cause the same horrors in the long run, they need to explain why. Otherwise it is just a rebranding.
If the first part is true, doesn’t that also apply to the second par? Where the reported rate would be much different from the true sentiments as revealed by actual decisions?
I do not see how that follows? The hypothetical, feared thing has actually happened, and they find it to be a lot less awful than they thought—they actually find that once they get the support and information they need and process the information, they are very happy. There always seems to be an initial shock, fear and overwhelm, but it appears that that tends to pass relatively quickly.
We could imagine a pressure to pretend to love your kid, as that is common, leading to an underreporting of regret.
But in that case, we could compare reports from parents of kids with Down syndrome being regretful with parents of kids without the syndrome being regretful.
In this context, the study “Regretting motherhood” comes to mind.
Can’t find a version without a paywall, and it is qualitative research (I assume because lies are so expected), so we have no straightforward numbers to compare (unless she details the recruitment process?), but the summary of her interviews suggests that regret was not correlated with the health and personality of the children, but with whether the woman herself wanted children in general. If the woman did not want to become a mother, the child being healthy and lovely did not change that. But if she did want to become a mother, a child with Down syndrome still brought happiness.
Another thing one could look into is kids given up for adoption. This is certainly more common with Down syndrome in countries where the parents are poor, and receive no support with medical problems, and experience a lot of discrimination. Which is how these kids end up adopted out to families in countries with a decent security net and less discrimination.
There are also adoptions within the US; people whose kids have Down syndrome wanting to adopt them out, others wanting to adopt them, and parents who considered adopting them out, but kept them. Reading the reports, a recurring theme is that the parents are initially extremely fearful and aversive, but upon spending time with kids who have the condition and their parents, their opinion often changes.
Here is a report of a mother who got the diagnosis and freaked out, wanting to adopt out, but changed her mind after interacting with kids with the syndrome, and is glad she did: https://www.ndsan.org/adoption-stories/i-decided-to-parent/story-1/
Here is one of a woman who adopted out—the text makes it clear she grew very fond of the child after birth, but didn’t think her life situation would make it possible for her to support a special needs child (she had only just met the father, they didn’t want a long term relationship, etc.) Again, decent social support seems to make a difference; the concern isn’t that they won’t love the child, but that they won’t manage to give it the support it needs https://www.ndsan.org/adoption-stories/i-made-an-adoption-plan/story-2/
And as for those who adopted—the process is a lengthy, complicated nightmare, they clearly really, really, really want those kids and are over the moon when they get them https://www.lovewhatmatters.com/we-found-our-phones-with-several-missed-calls-texts-congratulations-youve-been-matched-with-a-baby-boy-adoption-special-needs-family/ Again, a core theme is that they actually know people with the syndrome; the adoptive mother here had a cool uncle with down syndrome who was influential in her choice to want one.
No matter how you turn it—there seems to be a significant discrepancy between the number of parents who would chose against a child with down syndrome immediately and without any first hand experience, and those who have them and tend to actually be glad.
if your confused about the meaning of my comment, the accuracy of the numbers given in the quoted text:
… sound like wishful thinking as much as the wishful thinking revealed in your point:
i.e. If the reader accepts that the “23%-33%” is bogus then the “99%, 97%, etc.” would also be bogus for the same reasons.
I do not see how that is trivially obvious?
For the change in mind when the question on abortion goes from hypothetical and abstract to imagined acutely now, one can easily imagine an explanation—that people, for the first time, think through the implications of actually having a disabled kid right now, with their current finances and jobs and obligations, and feel utterly overwhelmed at not thinking about handling this one day maybe, but handling it right now, when it is not what they were expecting at all.
But later, they have had the child, their position has fundamentally changed, they know a lot more, they actually know what it is like after the initial shock, how much of their fear was rooted in ignorance and stereotypes. Yes, their position has also changed in that getting rid of the child is now more difficult, so there may well be a phenomenon where they accept a position that is hard to change and talk themselves into liking it. But this is true of all parents. And yet, among down syndrome children, the result does not seem that different.
If they said that yes, keeping the child with the condition was in fact awful, I find it plausible that they would be judged less than parents of children without the syndrome, who tend to get hell for saying they regret their children’s birth, so the pressure to lie would be less. After all, the numbers above suggests that the people who ask you would likely abort such a child themselves, so who are they to judge a person for not being happy with such a surprise child? And yet, the parents of kids with the syndrome generally do not express persistent regret—and they are so convincing in their statements that after talking to them, and seeing them with their kids, many prospective parents decide to keep the baby, or adopt a child with this condition. And the parents who make these statements sometimes end up adopting an additional child with down syndrome. I can’t imagine why they would do that if they didn’t mean it, noone is expecting them to. This is also consistent with the general finding that aversion to having a disabled child is higher if you have spent less time with disabled children—when you actually interact with them, and get more data and experience, you find they are not what you expected.
Like, seriously, listen to such parents and their kids and judge yourself if it looks like they are all lying. It is common to assume that they must be lying or delusional before engaging with them, because people who have no exposure to disabled folks often cannot imagine being genuinely happy with them. But it really looks like this changes when you actually meet them. They do, very honestly, state that their initial reaction was shock, grief, devastation, but trace how that changed over time.
Thanks for such a high quality comment. I’ve heard that the termination rate for Down Syndrome pregnancies varies by country. For example, I’ve heard it’s higher in most European countries than in America.
I don’t think everyone is going to make the same choice here. I suspect some parents would select for greater chance of same-sex attraction and some will select against it. Though I suspect that in most cases parents are just going to care much more about other traits so it won’t be selected very strongly either way.
I am reasonably certain that most conservatives and religious people would select against queer kids. Look at the effort they go to to make sure kids do not know that being trans or gay is even an option, stopping teachers from mentioning their gay partners. The attempts to pray, or electrocute, the gay away. The search for a cause of gayness so it can be prevented.
Yet very few gay people want to know the gay gene(s) (if there are any) so they can have more gay kids. There are a lot of hetero cis people trying to make their kids hetero and cis, but I have yet to encounter a queer person who is actively trying to make their kid queer. Give them options, yes. Raise them open-minded and informed, yes. But make them queer? Discourage them from being cis and hetero when they actually are? Have never seen it. Many queer people, despite being happy and proud, remember the pain discrimination caused them, the times they were beaten up, the fight for medical care, the flats where they were denied, the things thrown against their door. They don’t want to force queer kids into the closet, they want them to be out and proud. But they are often relieved when the kids are straight. If they could make their kids gay, I still highly doubt they would. If they could make them not be, I think a few would take that offer.
Amongst the liberals, I’d expect it to not to go either way that much—I think that would mostly play out like you imagine, with them caring primarily about other things, though I suspect there would still be a slight bias against. My mom is very liberal, and very accepting of me now, and adores my partner, speaks of us proudly, is perfectly happy with it now. But her initial reaction when I told her I was queer was very negative. She was very upset. She tried to talk me out of it, bizarrely. She said she was upset because she thought this meant my life would be harder. Despite living in one of the most liberal countries in the world, in a city with a huge queer scene, with queer people in politics and art everywhere. Similarly, when as a young person assigned female, I would not stop growing, my mum put me on hormones to stop that. She said I was getting too big for a girl, that I would not find a husband that way. She wanted to help, I am sure. I resent it massively. I’m borderline inter, I identify as non-binary, my partner specifically loves me being tall, being tall has been advantageous for me in my hobbies, and the hormonal intervention messed up my hormones, and may well have contributed to life-long problems. We also have a long history in my country of blatantly intersex children being born, and then assigned a binary gender at birth, and being surgically modified to look like it, undergoing unnecessary and non-consensual surgery that goes so freaking far beyond what I experienced, and not being told later. Because the parents wanted to save their kids the pain of not being normal. For the inter people involved, this is awful, because they have healthy tissue that would have given them pleasure cut away to fit a norm, while failing to give them any reproductive function; they are just made to fit a mould.
So I do not think queer people would disappear in the first generation.
But I do think they would be fewer, not equal or more.
And that raises an interesting question for future generations.
After a while, some trans clinics will increasingly close for lack of need, leaving the remaining trans kids having to travel far and deal with loopholes and lost forms and unclear rules and secondary jobs for doctors. There will be increasingly less need to cover queer topics in school if none of the kids are queer, it will seem pointless for so few people. Fewer people will want to organise or attend a pride parade. The gay bars will go broke. The gay dating pool will shrink. People who are bi will have less chance to discover it. More people will stay in the closet. Fewer people will be potential queer partners, period.
I mentioned the case of Down syndrome going extinct in Iceland above—mostly because I have been very touched by stories of parents with disabled children saying that it feels like the world is increasingly hostile to them, with support facilities closing, people not being educated, them being stared at more, people questioning why these kids are there.
I am haunted by a text I read by a mother of a disabled child. She said people kept seeing her kid and saying “oh how tragic, didn’t you know before?” And she would say, before the birth? Yes, she had known. The people would then go “Oh, but it couldn’t be fixed?” She would answer in confusion, well, no, it could not be operated on in the womb yet, only post-birth, and by then, parts of the results of the oxygen deprivation were irreversible; that the child was getting lots of therapy now and getting better and was happy, but would likely never entirely catch up. Then there would be an awkward silence. She eventually realised they weren’t asking why the kid had not been fixed. They were asking why the kid had not been aborted. Why she had allowed her daughter into the world. Her daughter, happily smiling, beloved, just existing and bringing joy, oblivious to the debate as to why her existence had been permitted at all.
There is nothing inherently bad about being queer, and queer people in accepting, supportive societies in which they are seen as normal and not alone and they have a thriving subculture are very happy.
But would a queer person be as happy if they are a rarity noone understands, with no structures for them, no subculture community, no partners? I doubt it.
Similarly, would a deaf person be happy in a society that has no sign language, no mandatory subtitles, no deaf community and culture, in which they are the only one? I doubt it, and yet think of Beethoven still composing while deaf, stranded alone; Stephen Colbert filling our homes with laughter while deaf on one ear.
Would a wheelchair bound person be happy in a world without ramps and accessible toilets? If the disability would have been known before birth, and yet the mother kept it, are they going to bill the mother and child for building a ramp into the school, which noone else needs? And yet I think of the beautiful physics Stephen Hawking has written while wheelchair bound.
I suspect the process of reducing unusual people with unusual needs would be self-accelerating. Queer people will have an increasingly bad time, and wanting to save their kids from an issue so big and systematic that they do not know how to fix it, would want to spare them from it.
Like I said—I do not think the individuals making choices in such systems mean to do a bad thing at all. Yet the changes to society that results are very scary, and I do not want them.
Is this because people predict accurately whether they’d like a Down kid, or because everyone thinks it’s bad but it’s actually pleasant?
Or some middle ground. Taking all percentages at face value, my first guess is that there is some social pressure to avoid birthing Downs, so people over-abort, and those who do not are defiant because they are quite sure, in the right, that they are totally fine with a Down kid, so they end up with a high rate of happiness. This is compatible with aborting being the right choice for most people.
Rephrase:
Most people are better off aborting the Down.
A few people are not.
The majority sets the social pressure.
People in the grey area default to aborting due to such social pressure.
The non-aborters are thus only those who are sure enough of what they to not follow social pressure.
Thus the non-aborters are a very well selected group of people actually better off with their Down kid.