There are a lot of really problematic things in this opinion. A lot of the arguements he brings up why schizophrenia is mostly genetic he just handwaves away or contains rather spurious logic or...
Exemplary
There are a lot of really problematic things in this opinion. A lot of the arguements he brings up why schizophrenia is mostly genetic he just handwaves away or contains rather spurious logic or very flawed comparisons, so his premise isn't very strong to start with. He even links to a webMD article that states that 85% of people with a family history of schizophrenia don't get it.
I've mentioned before, I rather dislike how often society pushes the false narritive of genes as destiny. Medical science has disproved this ages ago, and now there's a whole field of study called epigenetics because we found out that outcomes can be influenced by outside forces.
What I do like about this is that it acknowledges that the known external causes of schizophrenia are systemic in nature. One thing that doesn't get talked about enough is that most chronic health problems are largely systemic. We have problems with our food systems and culture and so we've got obesity, diabetes, and heart/circulatory problems. Schizophrenia is caused by a number of social issues, many of which are also causes of issues like depression, anxiety, borderline personality disorder, etc. I took a moment to skim through his article on attempting to change society, and while he's right that it's hard to change society, it doesn't change the fact that these are necessary changes that must happen if we really value people's lives and wellbeing.
But the thing I absolutely hate about this is that it basically saying to anyone who has a family history of schizophrenia that they're fucked, doomed to a mental illness, and there's nothing they can do to prevent it. My father had it and my grandfather probably did too, so it seems extremely likely that I will too, so I really don't need some asshole on the internet to tell me to resign myself to my fate.
I don't think that's what to get out it, though. If schizophrenia is genetic, then it's nonetheless useful for people in that genetic line to know that. They can know to more regularly see a...
But the thing I absolutely hate about this is that it basically saying to anyone who has a family history of schizophrenia that they're fucked, doomed to a mental illness, and there's nothing they can do to prevent it.
I don't think that's what to get out it, though. If schizophrenia is genetic, then it's nonetheless useful for people in that genetic line to know that. They can know to more regularly see a psychiatrist to see for early symptoms, or for loved ones to train themselves to recognize when psychosis might be happening and get the correct type of help earlier.
It's not destiny, nor is it inevitable, but just as it's useful for people in a family tree with chronic blood pressure issues, it'd be useful for schizophrenia.
It's not the message, true; it's the attitude. These things you are saying are all things he very crucially did not mention. The only thing he did mention - indirectly at that - was to not take...
It's not the message, true; it's the attitude. These things you are saying are all things he very crucially did not mention. The only thing he did mention - indirectly at that - was to not take cannabis. To be fair, though, that seems like good advice.
TBH, this is why I kinda hate Scott Alexander, and only read Slate/Astral Star Codex and LessWrong when I'm forced to so I can understand what everyone is arguing about whenever his writing gets...
Exemplary
TBH, this is why I kinda hate Scott Alexander, and only read Slate/Astral Star Codex and LessWrong when I'm forced to so I can understand what everyone is arguing about whenever his writing gets posted somewhere. He wades into these incredibly complex, ethically difficult, contentious topics, of which he is usually not a subject matter expert but still behaves as if he is an expert, seemingly without any consideration for the consequences of what he says or how he says it... as is typical of so many "rationalist" bloggers.
I don't disagree with your take on Scott Alexander or any self-described "rationalist" blogger, but that does feel like how discourse on the web works in general including here on Tildes. I myself...
He wades into these incredibly complex, ethically difficult, contentious topics, of which he is usually not a subject matter expert but still behaves as if he is an expert, seemingly without any consideration for the consequences of what he says or how he says it... as is typical of so many "rationalist" bloggers.
I don't disagree with your take on Scott Alexander or any self-described "rationalist" blogger, but that does feel like how discourse on the web works in general including here on Tildes. I myself often comment on topics like ethics, religion, and philosophy yet the only area I am a subject matter expert on is computer science (ironically a topic I'm not terribly interested in talking about in my free time.)
Though I suppose most of us don't have a blog. Is your thought that having reach or a platform increases one's responsibility with regards to accuracy?
Yes, exactly that. I also often comment on a wide variety of subjects here and elsewhere on the net, when the only things I have any real-world expertise in is IT, data recovery, and computer...
Is your thought that having reach or a platform increases one's responsibility with regards to accuracy?
Yes, exactly that. I also often comment on a wide variety of subjects here and elsewhere on the net, when the only things I have any real-world expertise in is IT, data recovery, and computer forensics related topics... although I do have a wide range of other long-time personal interests (e.g. military history) which I like to think I'm reasonably well-read and informed on as well.
But when all your posts are regularly read by tens-hundreds of thousands of people (or more) due to you/your platform being popular, and your posts also regularly get shared around the net (like Scott Alexander's are), IMO that person has far more of a responsibility to write properly well researched posts. And also be absolutely clear when they're not an expert on the particular subject they're commenting on, so are just speculating/theorizing, and/or sharing a personal opinion that could be based on faulty information or assumptions. And when the subject is also incredibly complex, ethically difficult, and their stance is potentially contentious/controversial, or goes against the general consensus of actual subject matter experts, that person should also consider how sharing their non-expert opinions on that subject might influence others in a potentially negative way.
p.s. I think we do all have some of that same responsibility, BTW, just to a much lesser extent since we're not broadcasting to tens/hundreds of thousands of people. So it's a lot less vital we caveat absolutely every opinion we might share here. But even our comments here can have a negative effect on others who read them, so we should still be try to be careful what we say and how we say it. Remember the human; Don't be an asshole; And all that still applies.
I think there is an absolute moral imperative to increase quality/verifiability with reach. I have 2 quick thoughts on this: It occurred to me there might be a kind of blogger-to-journalist...
I think there is an absolute moral imperative to increase quality/verifiability with reach.
I have 2 quick thoughts on this:
It occurred to me there might be a kind of blogger-to-journalist spectrum here, where words and intent and knowledge base and precision and expertise all become increasingly important as reach/audience expands. (Also worth examining how this becomes more difficult)
Money runs pretty much exactly opposite to quality/expertise/precision. Not only is it more expensive, but after (admittedly) only reading 1/2 of this article I figured out this guy’s trick is just throwing out semi-intelligent sounding straw-man arguments. To me it reads like pseudo-intellectual clickbait, not an actual honest discussion. It’s veiled hot button topic writing designed to spur exactly this engagement. I can’t tell if this piece can be declared to have been written in bad faith, or if I’m just angry after taking a hard look at it.
Yep. I feel like that's pretty much Scott Alexander's schtick. Just look at his post on slurs from last year, which should tell you absolutely everything you need to know about him. IMO he's a...
To me it reads like pseudo-intellectual clickbait, not an actual honest discussion. It’s veiled hot button topic writing designed to spur exactly this engagement.
Yep. I feel like that's pretty much Scott Alexander's schtick. Just look at his post on slurs from last year, which should tell you absolutely everything you need to know about him. IMO he's a pedant, contrarian, and polemicist of the highest (and most obnoxious) order, and I haven't read much by him that hasn't made me either roll my eyes, facepalm, or sigh heavily while shaking my head. The look of disapproval, ಠ_ಠ, is what I feel like 90% of his writing deserves in response.
Sometimes he writes about things he's not in expert in, but in this case that's not true. He actually is a psychologist and he's treated people for schizophrenia. It seems like he's talking about...
Sometimes he writes about things he's not in expert in, but in this case that's not true. He actually is a psychologist and he's treated people for schizophrenia. It seems like he's talking about things he knows pretty well?
But it's definitely true that he is being repeatedly misread by Tildes users, and that results in unfounded accusations. I'm not sure how much of that is his writing style and how much is that people here already have in for him. Somehow other people come up with wild misreadings that I don't. I had hoped for better.
As a psychologist he may know about diagnosing and treating schizophrenia, but I think the biggest problem here is the tangents he goes on into areas outside his wheelhouse (bioethics, genetics,...
As a psychologist he may know about diagnosing and treating schizophrenia, but I think the biggest problem here is the tangents he goes on into areas outside his wheelhouse (bioethics, genetics, epidemiology)... and especially near the end when he wanders into eugenics debate territory. So is it really any wonder why him doing something like that would upset people here, and undermine the rest of the points he's made in his post since that's where it felt like it was all leading to?
And in nearly every piece of writing of his I've read he has gone off on similar kinds of wild tangents, and advocated for all sorts of other questionable things as well, which has repeatedly left a bad taste in my mouth about him. So yeah, I and many other here are likely biased against him, and are perhaps not giving him the full benefit of the doubt when reading his writing, but it's not entirely without reason.
p.s. I've ignored this topic now, and added author.scott alexander to my tag filters. Ironically, reading his posts and online discussions on them is not good for my own mental health, and so I'd prefer to simply avoid him from now on.
I think if a bunch of fairly reasonable people interpret his message in a particular way it's sort of incumbent on the author to address that. I had no idea who he was, and still don't, so it...
I think if a bunch of fairly reasonable people interpret his message in a particular way it's sort of incumbent on the author to address that. I had no idea who he was, and still don't, so it wasn't "having it in for him".
I don't think it's reasonable to insist that everyone disagreeing with you on this is engaging in bad faith, misreading, or making unfounded accusations.
They aren't being reasonable in this case. I'm telling you, it's not there. Read it again if you don't believe me. Or, since it's a long article, search on "eliminate" and "population." There's a...
They aren't being reasonable in this case. I'm telling you, it's not there. Read it again if you don't believe me. Or, since it's a long article, search on "eliminate" and "population." There's a reference to "eliminate the risk entirely" but nothing about doing that in an entire population.
Misreading what someone else wrote is a thing that happens sometimes. I've done it myself in this very conversation.
I don't think he said anything about eliminating the population. I think his suggestions and offhanded dismissal of others' concerns were incorrect. His conversation and advocacy for screening out...
I don't think he said anything about eliminating the population. I think his suggestions and offhanded dismissal of others' concerns were incorrect.
His conversation and advocacy for screening out and thus disposal of embryos with the genes in question is what leads to the larger questions of "eliminating" groups of people with different disorders. Never mind that it isn't what he said, it's the ethical underpinnings of where his thoughts lead and it's an ethical question he dismisses poorly IMO.
I don't think he's being misinterpreted, I think most people don't have a stake in whether schizophrenia is called genetic or not*, it's what we do with that label that matters. And he dipped his toe into that without a lot of forethought. I replied to those because I think they were particularly poorly considered.
If I'm wrong and you think I've misread him, I'm happy to discuss, but I feel like you're more unhappy that the conversation fixated on that part of the article? Imo it's because that portion was so egregiously privileged/dismissive that it was worth addressing.
*I think it's not on the mark for a number of the other thoughts brought up but eh, it's a label.
Well, it's true that he could have been nicer about it. It seems like it should be possible to write the case for more awareness and education about the availability of prenatal testing for...
Well, it's true that he could have been nicer about it. It seems like it should be possible to write the case for more awareness and education about the availability of prenatal testing for schizophrenia in a way that doesn't push people's buttons. And maybe he would have, if this weren't an aside in another article about something else?
It's not about being nice. He chose to include several paragraphs on the testing, spoke in authoritative tone, overstated the case for testing as well as the availability and ease of access for...
It's not about being nice. He chose to include several paragraphs on the testing, spoke in authoritative tone, overstated the case for testing as well as the availability and ease of access for it, and then dismiss the concerns of disability rights advocates. It was also part of the quoted material in the comment here.
I think it's more than a simple aside and shouldn't have been included at all if he couldn't handle the topic with the respect that one would think it would deserve. I've never read anything else by him to my knowledge, but others have noted that this tends to be in his style, I think that this is a problem with his communication and not a failure of the Tildes community.
But that's just my opinion. I do think you're being unfair however, in your presentation of everyone else's interpretation of his work.
To pick one of those things: "dismiss the concerns of disability rights advocates" sounds pretty rude, but the substantive side of that is: what are those concerns, how valid are they, and what...
To pick one of those things: "dismiss the concerns of disability rights advocates" sounds pretty rude, but the substantive side of that is: what are those concerns, how valid are they, and what more do we need to consider?
But I think this conversation has gone on long enough, so I'm not going to go deeper. Some other time, maybe.
It’s definitely bad news in most ways. But as I often emphasize, we don’t know the future. Just because it’s partially genetic doesn’t mean it’s destiny. Many people with a genetic disposition...
It’s definitely bad news in most ways. But as I often emphasize, we don’t know the future. Just because it’s partially genetic doesn’t mean it’s destiny. Many people with a genetic disposition don’t get it. Possibly, research into about why that is will help prevent it?
Facing up to bad news is important in certain circumstances. How much is it worth to you to reduce the chance of your future children (if you have any) from getting it?
Mu. I'm not in a position to spread my genes for a number of reasons. My only sibling is much the same. Childhood was not a good time for us and we are not willing to subject anyone else to the...
Mu. I'm not in a position to spread my genes for a number of reasons. My only sibling is much the same. Childhood was not a good time for us and we are not willing to subject anyone else to the things we went through.
Schizophrenia is hardly the worst thing that can happen to you. If I were to have kids, I don't know if I'd want to do polygenic screening. Reading through that webMD article, it seems that it's good enough to simply teach them to live a good and healthy life, which will benefit them in many more ways than attempting to select their genes. Sure, it's harder and more expensive, but I'd argue that it's the minimum that you owe them.
Well, I don't know about that. Some people seem to cope quite well with it. Others, like my brother, are paralyzed by anxiety and paranoia, unable to work, poorly supported financially and...
Schizophrenia is hardly the worst thing that can happen to you.
Well, I don't know about that. Some people seem to cope quite well with it. Others, like my brother, are paralyzed by anxiety and paranoia, unable to work, poorly supported financially and ostracized by much of society. This is with medication, psychiatrists, social workers etc. My brother has always been compliant with whatever treatment they gave him and still, his life has just sucked for decades.
That's very fair. It would be a farce to say that my father's schizophrenia didn't affect him, but it's not like it prevented him from ever being happy. I wrote my comment that way because people...
That's very fair. It would be a farce to say that my father's schizophrenia didn't affect him, but it's not like it prevented him from ever being happy. I wrote my comment that way because people tend to catastrophize these kinds of things, so I wanted to bring a sense of perspective.
I'm reading through this but suicidal ideation and attempt is more complex than internal factors alone. I'm not dismissing the experience of schizophrenic people in the slightest but it's worth...
I'm reading through this but suicidal ideation and attempt is more complex than internal factors alone. I'm not dismissing the experience of schizophrenic people in the slightest but it's worth noting that this logic would also argue for the elimination of transgender people and is often used as proof of trans people's inherent "brokenness" or that transgender identities are inherently harmful.
We don't do well at managing schizophrenia, this study even shows that hospitalizations can increase suicidality, but that says we need better treatments and to treat people with mental illnesses better in general. I know you're coming from a very personal place and I'm not saying your experiences aren't yours or aren't valid. I'm just not convinced that eradication is possible nor where doctors should spend their efforts even if it were to be the ideal.
It might be valuable to clarify that it is fairly known and accepted by both the public and the medical community that outcomes are generally determined by a combination of genetics and...
It might be valuable to clarify that it is fairly known and accepted by both the public and the medical community that outcomes are generally determined by a combination of genetics and environment. I am unaware of the prevalence of this "genetics only" mindset that you seek to oppose. There are indeed many actions to take in order to improve health outcomes. At the same time, it is important to understand that the prevalence of genetic factors in determining these outcomes varies greatly between conditions. Some may be entirely determined by environmental factors while others may be predominantly determined by genetics. Which doesn't mean that we cannot take action to mitigate genetically determined conditions, or contemplate their sociological aspects and implications.
It's very hard to see this comment as anything other than deliberately obstinate. I agree with most of what you say but this thread is literally about an article that talks about schizophrenia...
It's very hard to see this comment as anything other than deliberately obstinate. I agree with most of what you say but this thread is literally about an article that talks about schizophrenia being "mostly genetic". And unfortunately this conversation does not just exist in a scientific context but is deeply philosophical, political, social etc. There are a variety of podcasts you can find talking and supporting some form of eugenics, some hidden behind facades of science or economics.
In my experience, I had an argument with a friend because he was talking about poor people being genetically predisposed to being poor, an opinion he got from a very popular podcast that I can't remember the name of now.
Right. So you don't like the insinuation that this is related to eugenics? My intention is obviously not to start a conversation about podcasts. This is an incredibly interesting and controversial...
Right. So you don't like the insinuation that this is related to eugenics? My intention is obviously not to start a conversation about podcasts.
This is an incredibly interesting and controversial topic for a lot of reasons. The author may be an expert, he does cite sources but this is still just an article. Similar to lots of people talking on podcasts. People are great at making up elaborate scientific or religious or whatever justification for unethical positions they hold. I've worked in social services and been given lots of reasons why we shouldn't care for disabled, homeless, indigenous or impoverished people. Genetics of bla bla bla is a very common excuse.
It's true that this is just one article, but it's the one I posted and I was hoping to have a better discussion about it. Or maybe not much discussion at all? I just thought it was interesting to...
It's true that this is just one article, but it's the one I posted and I was hoping to have a better discussion about it. Or maybe not much discussion at all? I just thought it was interesting to share and didn't think too hard about what sort of conversation there would be. Maybe if I did I wouldn't have posted it, or would have done more to get the conversation started on the right foot.
It's also true that people sometimes have terrible eugenics-related discussions, as you've given examples of.
Eugenics is extremely controversial, though. It's a rather big distraction to bring it up. Is prenatal screening for schizophrenia too boring?
Topic drift is normal in conversation, but this particular kind of topic drift towards more controversial ideas that are sorta-related is rather frustrating. It sounds like you don't like that kind of talk either.
I can't but notice that it's Tildes posters causing it to happen, though. Bringing up odious ideas in order to condemn them is still bringing it up. I don't think there are any actual eugenicists here or anyone on Tildes arguing in favor, but they're present in spirit, in people's imaginations, because we've seen them elsewhere.
Ya, point taken. In my mind this issue has 2 categories: nature vs nurture and the pragmatic ethical issues of prenatal screening. This is already a practise with a fetus with down syndrome...
Ya, point taken. In my mind this issue has 2 categories: nature vs nurture and the pragmatic ethical issues of prenatal screening.
This is already a practise with a fetus with down syndrome genetic mutation. I have worked with people with disabilities and I would never judge someone for making that decision in either direction. Same for schizophrenia. It can be a terrible disease. One implication then becomes if the option to know increases societal or familial pressure to abort. Or if someone has schizophrenia, should they just not be allowed to pass their genes at all?
He seems to have a strong opinion on prenatal screening being the best intervention but this is simply not the reality of the world. If it's an option for some families, fine. I don't know what the percentage of IVF births are but I'm going to assume it's low. For a family trying to have a baby for 2 or 5 years are they really going to prenatal screen and terminate a pregnancy for the risk, even assuming it's as high as he says it is?
Again I wouldn't judge anyone who took the opportunity to screen. I do think it's dangerous for medical professionals to start recommending it.
Who is telling women whether they can give birth or not? If it's the state, this is crossing the line between family planning and coercion, and all I can say is that we should strongly support...
Or if someone has schizophrenia, should they just not be allowed to pass their genes at all?
Who is telling women whether they can give birth or not? If it's the state, this is crossing the line between family planning and coercion, and all I can say is that we should strongly support women's rights. Family pressure is a serious issue, though.
Also, there's no single gene for schizophrenia. It's a combination of slight tendencies from hundreds of genes, and each fertilization is another roll of the dice. The idea is that if the results don't look promising, you can roll again. Easier to do with IVF, admittedly. Yes, some will choose to stick with what they got and take their chances.
"I am unaware of the prevalence of this "genetics only" mindset that you seek to oppose." This is an extremely patronizing and dismissive sentence especially, and at risk of repeating myself,...
"I am unaware of the prevalence of this "genetics only" mindset that you seek to oppose."
This is an extremely patronizing and dismissive sentence especially, and at risk of repeating myself, since this is what the article is about. Then using Reddit as an insult (I guess?) is not helping your case. Be the change you want to see as they say. You also never responded to me beyond the "insult".
Do I need to respond to "broad generalizations" by pointing out that it was not broad, it was only your reply? I did not intend on getting into a personal argument but you, in particular, not in general, seem to be very obstinate.
I'm very surprised that you haven't heard of people who think about genetics this way. It's certainly less popular than it used to be, but it still exists. It's a bit of a personal pet peeve of...
I'm very surprised that you haven't heard of people who think about genetics this way. It's certainly less popular than it used to be, but it still exists. It's a bit of a personal pet peeve of mine because it tends to be something of a roundabout fatalism.
I don't know where I land on the opinion over all yet but I had a few thoughts on this part. That IF you're already doing IVF is doing some heavy lifting. Just under 2% of births are from IVF....
I don't know where I land on the opinion over all yet but I had a few thoughts on this part.
By comparison, you can very clearly halve your children’s risk of schizophrenia through polygenic selection, which costs only a few hundred dollars if you’re already doing IVF. You don’t need to worry about whether your teenager will ignore your recommendation not to use marijuana, you don’t have to fiddle around with shaving a few points off the variance, and you don’t have to worry that you’re chasing correlational phantoms. Just pay a few hundred bucks and you’re done. And polygenic screening gets better every year. In a decade or two you can probably eliminate the risk entirely.
That IF you're already doing IVF is doing some heavy lifting. Just under 2% of births are from IVF. Especially considering the other risk factors, it seems quite likely that the people who can afford IVF and choose to go through with the process are an incredibly small subset of our parents of potentially schizophrenic children. A "few hundred dollars" is not reflective of the total cost. (And isn't zero, so it doesn't help poor folks at the highest risk anyway)
Also, if the risk only halves then you still do have to worry about all of those other triggering risk factors. Cutting the risk in half isn't nothing obviously, but it isn't being eliminated, despite the assumption that soon we can eliminate it entirely. Which I think is another assertion going unquestioned by the author. It's optimistic IMO.
Given the absolutely low percentage of IVF births, it makes absolute sense to me why doctors aren't recommending "preventing" schizophrenia instead of treating it. The reality of their patients, even their patients planning to have children is not one where preconception screening is an option.
I do also think the disability advocates have reasonable concerns about eugenics when it comes to IVF screening. But I'm also sympathetic to the fact that our society does not provide enough support for parents of people with serious medical or mental health conditions nor those people when they become adults. It's an ethical morass.
But of course this is always what these "it's not eugenics I swear" arguments for "preventing" diseases and disorders boil down to -- they don't want to treat it or make life better for people who...
Given the absolutely low percentage of IVF births, it makes absolute sense to me why doctors aren't recommending "preventing" schizophrenia instead of treating it.
But of course this is always what these "it's not eugenics I swear" arguments for "preventing" diseases and disorders boil down to -- they don't want to treat it or make life better for people who have it. Especially with schizophrenia, they don't see them as people. To them, schizophrenia is like lycanthropy -- for a while you're a human and then suddenly you're a terrifying non-human monster. They don't want to treat schizophrenia -- they want to use eugenics as a silver bullet so they never have to deal with the "problem" of people with ugly mental illnesses that scare them.
I fully agree. And I always have to wonder what else you lose if you lose schizophrenia. Do we lose creative genes? Do we lose artists? Prevalence of those genes are higher in creative...
I fully agree. And I always have to wonder what else you lose if you lose schizophrenia. Do we lose creative genes? Do we lose artists? Prevalence of those genes are higher in creative professions.
It'd be nice I suppose to remove all human suffering. But who is to decide whose existence is suffering?
The author (and several others in the comments here) also seems convinced that this method will just casually lead to elimination of schizophrenia solely through elective selection prior to birth....
The author (and several others in the comments here) also seems convinced that this method will just casually lead to elimination of schizophrenia solely through elective selection prior to birth. Even in the best case scenario where IVF and genetic screening are free and the genetic screening 100% eliminates the possibility of developing schizophrenia -- either of which is a pipe dream currently -- this policy doesn't come close to eliminating schizophrenia solely through willing IVF participants with genetic screening.
Do they think people with schizophrenia (not even to mention those with underlying genetic risk but no schizophrenia) are going to just never become pregnant naturally? That they're always going to want to abort when that happens? Surely even in the most rosy scenario for this policy it's going to require this to happen almost universally if we actually want to eliminate schizophrenia. The world in which we eliminate schizophrenia solely through willing choices by to-be parents is a fantasy.
Especially after reading the comments on the post about whether schizophrenics should be allowed to refuse medication, I cannot believe anyone (especially not someone like the author of this article) believes that "preventing schizophrenia" in this way doesn't come alongside denial of bodily autonomy for schizophrenic people. You think those who approve of forcing someone with schizophrenia to take antipsychotics without their consent is going to flinch at also forcing them to take contraceptives without their consent? Or get a vasectomy without their consent? These people are already dehumanized and denied personal autonomy constantly. You think a push to prevent schizophrenia in this way isn't going to lead to more denial of bodily autonomy in the same way that treating schizophrenia already does?
Other than being a distraction, I see nothing particularly wrong with expressing the vague hope that someday there won't be children born with a genetic predisposition for schizophrenia. This...
Other than being a distraction, I see nothing particularly wrong with expressing the vague hope that someday there won't be children born with a genetic predisposition for schizophrenia. This seems pro-parent and pro-child; who would wish that on their children?
But that's quite different from thinking it's going to happen any time soon. It isn't the same as advocating for it as a practical goal. As you say, it's rather unlikely. (But we don't know the future.)
It's practical, though, for some parents to do it now, if they're aware of it.
Also, whose consent are we talking about here? Prenatal screening isn't about infringing on the rights of anyone who has already been born. Bringing up things like "denial of bodily autonomy" in a discussion of prenatal screening seem rather confused. It's confusing the treatment of people already born (for whom genetic screening is irrelevant, except as parents) and parents' decisions about what children they will have.
(Meanwhile, a real-world danger for pregnant women is from governments who make abortion illegal, and might restrict prenatal screening too.)
I am not referring to the denial of bodily autonomy to anyone not already born. I am referring to the bodily autonomy of living people with schizophrenia. I thought referencing forcing them to...
I am not referring to the denial of bodily autonomy to anyone not already born. I am referring to the bodily autonomy of living people with schizophrenia. I thought referencing forcing them to take contraceptives or have vasectomies made that clear but sorry if that got lost in my previous comment.
The author of this article castigates his colleagues for caring more about treatment than prevention -- he calls it "odious". But encouraging people who are already getting IVF to get genetic screenings is not going to eliminate schizophrenia from the gene pool. Not even close. The effect would be miniscule. The actual methods you would need to employ to get even close to preventing schizophrenia like this are abhorrent things that would have to be forced on people with schizophrenia without their consent.
Okay, thanks for clarifying. I did miss that. I don’t believe it’s true that force is necessary for many women to want to avoid passing on genes that predispose their children to have...
Okay, thanks for clarifying. I did miss that.
I don’t believe it’s true that force is necessary for many women to want to avoid passing on genes that predispose their children to have schizophrenia. The idea of eliminating schizophrenia is utopian, but since we’re dreaming, perhaps someday IVF will be cheaper, easier, and more common? Alternatively, it’s true that more prenatal screening might result in more abortions, but if that happens it’s because women decide that it’s for the best.
And population genetics aside, for any given woman, this is a potentially life-changing intervention that could have a dramatic effect on their family’s future. That’s the real reason to make it more available, the individual benefits, not the large-scale “gene pool” stuff that probably won’t work anyway. It seems like reason enough to promote prenatal screening for schizophrenia? (Not that I’m going to do it myself; I’m no expert and I don’t know how well it works.)
Taking a discussion of better family planning and saying, “oh, you must want to take away women’s reproductive rights” is what I object to. I suspect people weren’t thinking about it in quite that way, but this is effectively what happens in some discussions of genetics, because people are reminded of eugenics whenever anyone discusses population-level genetics.
Although this discussion was rather annoying, I do think that it helped me clarify some issues. I hadn’t fully connected the dots on women’s rights and genetics before.
I'd be more amenable to viewing the author's position as just a discussion of better family planning and that the elimination of schizophrenia through just those means is intended to be a utopian...
I'd be more amenable to viewing the author's position as just a discussion of better family planning and that the elimination of schizophrenia through just those means is intended to be a utopian fantasy... if he didn't call doctors who focus on treating schizophrenia odious for not prioritizing prevention over treatment. You don't generally prioritize utopian pipe dreams over treating existing living patients, and I don't think most people would consider it odious ti do so.
I'm not against women having abortions for any reason, including likelihood of passing on certain diseases. I definitely understand the benefits it would have on an individual level -- I don't intend to present improving access to genetic screening like this as bad. But when the idea of eliminating schizophrenia through genetic screening is presented as so important that it is odious not to prioritize it above treatment, you inevitably have to deal with the inefficacy of this. Sure, many women would be perfectly willing to abort a fetus that had a high chance of developing schizophrenia as an adult. But that doesn't actually address how you deal with those that wouldn't under those circumstances, and I don't think it's fair to pretend that this population is so insignificant as to be written off. Especially given how willing many people already are to override the bodily autonomy of those with schizophrenia, as well as the not-so-distant history of using forced sterilization on undesirables, it is absolutely justified to have some big doubts about someone fervently arguing for prioritizing eliminating schizophrenia through genetic screening. It's not just a question of genetic screening itself in that context.
From my perspective, either he's arguing for something even he must know would be utterly ineffective and insulting his colleagues' moral character for not considering it more important than treating schizophrenic patients, or he believes that this ineffective method would be the first step in a more effective program and left the details of this more effective follow-up unspoken. Either way I think his perspective is hugely flawed.
I didn’t read it that way at all. When he’s talking about effectiveness, he’s pretty clearing seeing it from an individual perspective, rather than some master plan to rid the world of...
I didn’t read it that way at all. When he’s talking about effectiveness, he’s pretty clearing seeing it from an individual perspective, rather than some master plan to rid the world of schizophrenia:
By comparison, you can very clearly halve your children’s risk of schizophrenia through polygenic selection, which costs only a few hundred dollars if you’re already doing IVF. You don’t need to worry about whether your teenager will ignore your recommendation not to use marijuana, you don’t have to fiddle around with shaving a few points off the variance, and you don’t have to worry that you’re chasing correlational phantoms. Just pay a few hundred bucks and you’re done. And polygenic screening gets better every year. In a decade or two you can probably eliminate the risk entirely.
Some context that’s not in the article: his wife recently gave birth to twins. I’m guessing this is all from the perspective of someone who just went through that process (maybe they used IVF?) and wonders why this screening isn’t recommended more often.
I don’t see anywhere in the article where he even talks about the possibility of eliminating schizophrenia in a population? That “eliminate the risk entirely” is a bit vague but it seems to be meant for a hypothetical family who had some new, better screening done. That’s a lot different!
The idea that schizophrenia could be eliminated entirely seems to be a notion that was invented during our conversations on Tildes?
Ah I do think the context that he and his wife just had kids (and twins are more likely from IVF, though that's ofc speculating) makes the framing make more sense. Rereading the article, I still...
Ah I do think the context that he and his wife just had kids (and twins are more likely from IVF, though that's ofc speculating) makes the framing make more sense. Rereading the article, I still think the way he frames prioritizing treatment over prevention as bad is wrong, but I think it's clearer that this is in response to researchers not sharing their genetic data with screening companies. I do think that he too quickly brushes off the implications of what he argues for -- I don't think it's enough to day this just "reminds people of eugenics" and otherwise ignore the potential for abuse there. But rereading the article I can see more clearly that he is probably not thinking about it through that lens himself and that he himself is probably just thinking about doctors encouraging couples with high risk factors to get genetic screening.
Unlike most of the people in this god-forsaken thread I know many people with schizophrenia. I know people who cope with very small doses of meds and who live hearing voices, I know people who had...
Other than being a distraction, I see nothing particularly wrong with expressing the vague hope that someday there won't be children born with a genetic predisposition for schizophrenia.
Unlike most of the people in this god-forsaken thread I know many people with schizophrenia. I know people who cope with very small doses of meds and who live hearing voices, I know people who had good experiences with EIP services, I know people who've never been hospitalised. But I also know people who were hospitalised, who are on high doses of harmful meds, who've been medicated against their will by force, who've been subject to state-sanctioned violence in hospital, people who've had forensic involvement in their care and were sent to hospital by the courts. I know women who had their children removed by the courts because of their mental illness, I know people who were (and still are) street homeless because of their schizophrenia.
Over the past 15 years I've met hundreds of people with schizophrenia.
What you're saying here is you don't care at all about any of these people. You don't care that they love and are loved, you don't care that they're human, you don't care if they think their lives have value, you don't care if their loved ones think their lives have value, you don't care if society thinks their lives have value: you don't like them and so they should be eliminated.
This is literally Nazi ideology - read up on Aktion T4.
It's possible to express hope that unborn children won't have to deal with these things and also hope for better treatment, care, and respect for the people who do suffer from these things....
It's possible to express hope that unborn children won't have to deal with these things and also hope for better treatment, care, and respect for the people who do suffer from these things.
It is so easy for humanity and society to loop back around to our worst natures. To go a step further, to truly "eliminate" genetically caused disorders, granting the argument for a moment, you'd...
It is so easy for humanity and society to loop back around to our worst natures.
To go a step further, to truly "eliminate" genetically caused disorders, granting the argument for a moment, you'd have to control everyone's fertility completely. Not just those with a known predisposition. Because it wouldn't stop with schizophrenia. It probably won't start there, tbh but it wouldn't stop. Our history of sterilizing perceived undesirables is disturbingly recent.
I do think that level of dystopia is a long way off - but it looms behind the arguments that fat people should fix themselves with a pill, that mentally ill people should be forcibly medicated, that people on welfare should be sterilized.
This absolutely has something to do with the article (and even if it didn't, it's certainly got something to do with the comment I directly replied to). You're free to disagree with my perspective...
This absolutely has something to do with the article (and even if it didn't, it's certainly got something to do with the comment I directly replied to). You're free to disagree with my perspective but it's simply inaccurate to say this does not relate.
My partner recently froze her eggs and part of that was both of us getting genetically tested to see if there was overlap of potentially harmful genetic traits. For women you need to be undergoing...
That IF you're already doing IVF is doing some heavy lifting. Just under 2% of births are from IVF.
My partner recently froze her eggs and part of that was both of us getting genetically tested to see if there was overlap of potentially harmful genetic traits. For women you need to be undergoing IVF, but for men you can at least know what traits you present for ~$200. I learned I am a carrier for a few things like kidney disorder, albinoism, and a few other things I can't recall. I think that would reduce your risk by quite a bit, knowing the risk of presentation if not selecting in the individual embryo.
I'm not gonna argue about doing the genetic testing on yourself if you want it, for sure, but I think the point was eliminating embryos that contained the undesired genetic markers. Which is why,...
I'm not gonna argue about doing the genetic testing on yourself if you want it, for sure, but I think the point was eliminating embryos that contained the undesired genetic markers.
Which is why, for what it's worth, I think it's weird that he's so dismissive about eugenics concerns.
It's not that weird if you know that there are a lot of bad arguments about eugenics out there. I dislike articles that react to the worst advocates of the other side (rather than the best), but I...
It's not that weird if you know that there are a lot of bad arguments about eugenics out there.
I dislike articles that react to the worst advocates of the other side (rather than the best), but I can see how that happens.
It is weird to blow off legitimate concerns from disability advocates as "vaguely reminding them of eugenics". Or perhaps it's not weird, it's just a bad take. But I think being dismissive is weird.
It is weird to blow off legitimate concerns from disability advocates as "vaguely reminding them of eugenics".
Or perhaps it's not weird, it's just a bad take. But I think being dismissive is weird.
As I noted in another comment, I do not think that testing that impacts at best 2% of births is "best practices" for eliminating any disease and that focusing on treatment is absolutely key. His...
As I noted in another comment, I do not think that testing that impacts at best 2% of births is "best practices" for eliminating any disease and that focusing on treatment is absolutely key. His solution is not practical and isn't a solution. It's one tool but it's a tool that won't fit within many people's moral framework to begin with. It's not simple pre-natal testing it's pre-implantation testing, in vitro. (In-vivo testing would be a whole other can of ethical worms but it wasnt clear that's what he's recommending.)
I appreciate you woke up in a bad headspace but I'd love it if you'd show me where I'm being callous to the suffering of others or said the word "genocide" much less compared it the two.
I don't want people to suffer unnecessarily, but to completely eradicate a genetic disease would require full control over the fertility and bodily autonomy of every generic carrier. That would be violating innumerable human rights for essentially entire populations.
As I said, if someone wants to get tested or add testing on to their IVF sure, they should. But it is no solution.
I am genuinely very empathetic to living with mental illness, chronic pain, and the like. I do myself. But I don't think it's any individual's place to say that everyone with any diagnosis is better not being born. Even as improving treatment and prevention is critical.
The idea of eliminating schizophrenia at a population level via genetic testing seems to be something invented by Tildes members in conversation, not something in the original article. Prenatal...
The idea of eliminating schizophrenia at a population level via genetic testing seems to be something invented by Tildes members in conversation, not something in the original article.
Prenatal testing can be justified as being useful for family planning (your kids are less likely to get schizophrenia), regardless of what anyone else does. That's why it may sometimes make sense for doctors (who are supposed to considering what's best for their patients, individually) to recommend it.
I've noted that there's absolutely reasons to get prenatal genetic testing done. But what was suggested in the article was not that. As previously discussed.
I've noted that there's absolutely reasons to get prenatal genetic testing done. But what was suggested in the article was not that. As previously discussed.
Hey take care of you. I didn't take your comment personally, I just wanted it to be clear where I was coming from. I think the author of this article proposed bad solutions that are dismissive of...
Hey take care of you. I didn't take your comment personally, I just wanted it to be clear where I was coming from. I think the author of this article proposed bad solutions that are dismissive of the concerns raised in the comments. That doesn't erase the real life struggles you and others deal with.
You’re right, he’s being very optimistic there, though who knows, maybe there will be medical advances that bring costs down? I still think it’s wrong not to mention the possibility in documents...
You’re right, he’s being very optimistic there, though who knows, maybe there will be medical advances that bring costs down?
I still think it’s wrong not to mention the possibility in documents meant for high-risk families. It may not be practical in any given situation, but they should still be informed since prevention is generally far cheaper than treatment.
When it comes to IVF it may not be. I'm not saying it shouldn't be mentioned but for an author that dismissed all the other ways to address risk factors as meaningless/impossible etc. it's...
When it comes to IVF it may not be. I'm not saying it shouldn't be mentioned but for an author that dismissed all the other ways to address risk factors as meaningless/impossible etc. it's dishonest to pretend that this is the answer when it's not feasible for most Americans. Perhaps IVF is paid for more in other parts of the world, but even in states where it is covered here, I'm not sure it's covered for anything but infertility.
Doctors have to do best practices for their individual patients and also providing general advice on the population level. If their patients are going through IVF I'd hope they'd offer the option to do this sort of screening, not just for schizophrenia but for any genetic markers the couples want. Offer but not force. This doesn't get into how stressful IVF is for infertile coupes which
But if there are 24 million people with schizophrenia today, and (forgive the assumptions of a normative distribution) 2% of them were statistically born with IVF, and using this screening to discard embryos drops you down to half the rate of schizophrenia. This would reduce the number of people with the schizophrenia by 240,000. That's not nothing but also about 20% of folks with this diagnosis report favorable outcomes on the lowest end of those surveys I could find. So that's 192,000 people out of 24,000,000 with the diagnosis who escape possible unfavorable outcomes.
(Which gets messier in that it's not technically the same people born but again, approximating. AND knowing that triggers for schizophrenia in those with the genetic predisposition are more common among people with less money and less healthcare access, skewing these numbers more)
This is not something worth blaming doctors for not promoting to patients not already seeking fertility treatment. This is not a solution. And it is absolutely flavored like eugenics and his dismissal of it is a red flag to me.
I think reducing what I said down to "basically agree about genetic screening" is ignoring most of what I wrote as well as my criticisms of the original article. Had he said "people should offer...
I think reducing what I said down to "basically agree about genetic screening" is ignoring most of what I wrote as well as my criticisms of the original article. Had he said "people should offer genetic screening when applicable" instead of "it's super easy and just a few hundred bucks if you're already privileged to be spending thousands or tens of thousands and should be the focus of doctors rather than treatment and also why would anything think this is eugenics?" then I would have written way less and perhaps you could summarize my point so.
Sorry, I wanted to point out something we agree on and was sloppy about saying what it is. To rephrase that, I'm glad you're not against genetic screening under the right circumstances. I think...
Sorry, I wanted to point out something we agree on and was sloppy about saying what it is. To rephrase that, I'm glad you're not against genetic screening under the right circumstances.
I think you misread the article; I don't see anything in there that says treatment for schizophrenia is bad or shouldn't be funded. (A psychiatrist arguing against psychiatric care would be rather odd!) He is saying that it's expensive and often doesn't work.
I didn't say he said those things. He actually specifically argues that the idea of treatment over prevention is a bad idea, after advocating nearly solely for genetic screening and dismissing...
I didn't say he said those things.
He actually specifically argues that the idea of treatment over prevention is a bad idea, after advocating nearly solely for genetic screening and dismissing most alternative prevention mechanisms for what I think are reasonable criticisms taken too far. Called it "odious". It's actually not that weird to have random doctors arguing against evidence based practice. I don't know his credentials, and though I believe he comes from a place of concern for patients I think he's being obtuse on the topics I've mentioned.
If your only "reliable" prevention method will impact 1% of the schizophrenic population I would argue it shouldn't in fact be the priority.
Maybe I don't understand the point he's trying to make here, but voluntary or not, this is essentially eugenics. I think most people that are uncomfortable with the idea of screening for something...
Sometimes it’s because this completely voluntary process vaguely reminds of them of eugenics.
Maybe I don't understand the point he's trying to make here, but voluntary or not, this is essentially eugenics. I think most people that are uncomfortable with the idea of screening for something like this are uncomfortable because of a perceived slippery slope. If screening for Schizophrenia becomes okay, what about autism? ADHD? I don't have an answer to this, but I do think that listening to bio-ethicists when they are uncomfortable with a practice is probably a good start...
Yeah I'm aware of genetic screenings available during pregnancy, and I'm uncomfortable with the idea in a way that I have trouble articulating or really explaining. On the face of it, it seems...
Yeah I'm aware of genetic screenings available during pregnancy, and I'm uncomfortable with the idea in a way that I have trouble articulating or really explaining. On the face of it, it seems like giving parents the option of terminating a pregnancy in the event of an extremely debilitating condition is a good thing that reduces suffering, but it gives me a feeling of unease that I'm not sure that I can really defend. Because of that, I wouldn't try to tell someone else that they are wrong for taking those steps, but my wife and I did avoid those screenings because of that discomfort (both mine and hers).
Yeah I'm familiar with sex selective abortions. To be perfectly clear, I am not in favor of reducing access to abortion, even elective abortion, but it does seem like it can create some...
Yeah I'm familiar with sex selective abortions. To be perfectly clear, I am not in favor of reducing access to abortion, even elective abortion, but it does seem like it can create some problematic situations when certain traits are desirable over others. And in this example it's hard to be overly critical, because schizophrenia is a really difficult thing to deal with. I'm not proposing banning anything, I'm just trying to express some discomfort with this practice that feels very much like eugenics when you look at it on a large scale.
Where I come down in the balance is that society does not provide adequate supports to parents of disabled children and parents of disabled adults with high support needs. If those supports were...
Where I come down in the balance is that society does not provide adequate supports to parents of disabled children and parents of disabled adults with high support needs. If those supports were actually adequately provided I think I'd have a greater ethical issue with the practice of gene selection/selective termination than I already do. But I think even then bodily autonomy weighs out in the individual, even if I think certain genetic selection shouldn't be a matter of acceptable medical practice.
Is it true that there's a German law that says that a woman may have an abortion for any reason she damn well pleases, so long as she does not say it's because the fetus would have genetic...
Is it true that there's a German law that says that a woman may have an abortion for any reason she damn well pleases, so long as she does not say it's because the fetus would have genetic abnormalities/non-fatal birth defects (to prevent eugenics)? That may be merely one of the "facts" that all terminally-online people of a certain age has learned.
If it's a law it's highly unlikely to be a German one, as the abortion laws here are pretty strict to begin with. Abortion is only legal up to 12 weeks unless it's a risk to the health of the...
If it's a law it's highly unlikely to be a German one, as the abortion laws here are pretty strict to begin with. Abortion is only legal up to 12 weeks unless it's a risk to the health of the mother, and mandatory counseling is required. Up until quite recently it was illegal for doctors to advertise that they offered abortions either. Contraception isn't even covered by public health insurance here unless you're under 22.
Whether it’s eugenics depends on definitions, but I think he’s taking it as something forced on others (for example, by the state), by analogy with selective breeding on animals. The dictionary...
Whether it’s eugenics depends on definitions, but I think he’s taking it as something forced on others (for example, by the state), by analogy with selective breeding on animals. The dictionary definitions don’t say this directly, but they do talk about large-scale changes to populations, which requires a lot of power.
By contrast, genetic testing is something parents choose for their families, and I think we should support reproductive rights.
People do have concerns from slippery slope arguments, but this is often a form of whataboutism, that is, bringing up nearby subjects that are not the same thing. It’s very easy to go off-topic since there are other uses of genetic testing that are more problematic, but I don’t think we should let that get in the way of curing schizophrenia? It would be clearer to discuss each use separately.
Perhaps some bioethicists have better arguments. I think that’s better handled by linking to them? It’s hard to give much credit to an argument you haven’t read.
Yep. There are a lot of things that could improve quality of life for the world if you cede control of basics rights to a benevolent authority. The issue becomes when the authority is no longer...
Yep. There are a lot of things that could improve quality of life for the world if you cede control of basics rights to a benevolent authority. The issue becomes when the authority is no longer benevolent.
I don't think there's any clear line. In terms of legality, though, I would generally defer to the parents - if they want such screening, it's up to them. It'd be their child, and they would bear...
I don't think there's any clear line. In terms of legality, though, I would generally defer to the parents - if they want such screening, it's up to them. It'd be their child, and they would bear the burden of childcare in the end.
You can read the article for the arguments, but later on he writes about why this matters: …
You can read the article for the arguments, but later on he writes about why this matters:
I think if E. Fuller Torrey had discovered that something fun and interesting like toxoplasma or social defeat explained 80% of the variance in schizophrenia, everyone would say “Oh! That causes schizophrenia!” and forget all the nitpicking. This would happen even though toxoplasma can cause other things, even though it might not explain the exact causal pathway by which toxoplasma causes schizophrenia, etc. I think people really want things not to be genetic, so when they do turn out to be genetic, they apply higher standards for whether you can call that “the cause”. Then people underestimate how much genes matter.
This is well-intentioned: people want to fight back against a disease, so they want to exhaust all hope of finding environmental causes (which they think they can change) before giving up and attributing it to genetic causes (which they think they can’t). But as we often discuss here, this is backwards - society is fixed and biology is mutable.
A story: once I was seeing a young man who became psychotic for a few days every time he used cannabis. Along with medical treatment, I gave him the obvious suggestion: stop using cannabis! This was both because even a few days of psychosis can be pretty bad, and because I was worried he was at high risk for schizophrenia and cannabis might eventually push him permanently over the edge. His parents attended the appointments and very strongly reinforced the “don’t use cannabis” message. Every few months, he would use cannabis, become briefly psychotic, and need me to help get him out of it. Every few months, I would use all the tools I had - contracts, motivational interviewing, tearful lectures from his parents, etc - to try to convince him not to use cannabis. Every few months, he would swear he definitely wouldn’t use it again. Every few months, he would come back, psychotic again, after using more cannabis. Until one time it pushed him over the edge and he became schizophrenic and as far as I know he still is.
The other environmental risk factors for schizophrenia are equally hard to change. Poverty? Okay, don’t be poor, thanks for the important life advice. Social defeat? “Doctor, are you saying I have to never let anyone defeat me?” “Yes, it’s my official medical recommendation that you become invincible.” The only thing in this category I’m really excited about is fish oil supplementation, and even that might or might not replicate.
…
By comparison, you can very clearly halve your children’s risk of schizophrenia through polygenic selection, which costs only a few hundred dollars if you’re already doing IVF. You don’t need to worry about whether your teenager will ignore your recommendation not to use marijuana, you don’t have to fiddle around with shaving a few points off the variance, and you don’t have to worry that you’re chasing correlational phantoms. Just pay a few hundred bucks and you’re done. And polygenic screening gets better every year. In a decade or two you can probably eliminate the risk entirely.
Still, if you look at the resources on how to avoid schizophrenia, the ones doctors are supposed to give people from high-risk families when they’re considering having kids, they never mention polygenic screening. It’s all just “don’t do drugs” and “avoid getting socially defeated”.
It’s even worse than that, because people keep trying to sabotage polygenic screening! The psychiatric genetics teams are trying to prevent screening companies from using their data! Sometimes it’s because this completely voluntary process vaguely reminds of them of eugenics. Other times it’s because they somehow try to pretend the amount of variance involved doesn’t matter or isn’t worth it, even though it’s a million times more than the drug abuse and social defeat issues people constantly obsess over. But other times it’s even weirder - a bioethicist in this article and a geneticist in this one both say variants of “health care should be about treating schizophrenia, not preventing it”. This is both totally antithetical to the spirit of real clinical medicine as it’s practiced, and ethically odious to anyone who has witnessed the side effects of antipsychotics first-hand. I cannot wait until this kind of thinking ends up in the shameful dustbin of history, alongside all those 18th-century people who tried to ban vaccines because diseases were a divine punishment and humans shouldn’t interfere.
There are a lot of really problematic things in this opinion. A lot of the arguements he brings up why schizophrenia is mostly genetic he just handwaves away or contains rather spurious logic or very flawed comparisons, so his premise isn't very strong to start with. He even links to a webMD article that states that 85% of people with a family history of schizophrenia don't get it.
I've mentioned before, I rather dislike how often society pushes the false narritive of genes as destiny. Medical science has disproved this ages ago, and now there's a whole field of study called epigenetics because we found out that outcomes can be influenced by outside forces.
What I do like about this is that it acknowledges that the known external causes of schizophrenia are systemic in nature. One thing that doesn't get talked about enough is that most chronic health problems are largely systemic. We have problems with our food systems and culture and so we've got obesity, diabetes, and heart/circulatory problems. Schizophrenia is caused by a number of social issues, many of which are also causes of issues like depression, anxiety, borderline personality disorder, etc. I took a moment to skim through his article on attempting to change society, and while he's right that it's hard to change society, it doesn't change the fact that these are necessary changes that must happen if we really value people's lives and wellbeing.
But the thing I absolutely hate about this is that it basically saying to anyone who has a family history of schizophrenia that they're fucked, doomed to a mental illness, and there's nothing they can do to prevent it. My father had it and my grandfather probably did too, so it seems extremely likely that I will too, so I really don't need some asshole on the internet to tell me to resign myself to my fate.
I don't think that's what to get out it, though. If schizophrenia is genetic, then it's nonetheless useful for people in that genetic line to know that. They can know to more regularly see a psychiatrist to see for early symptoms, or for loved ones to train themselves to recognize when psychosis might be happening and get the correct type of help earlier.
It's not destiny, nor is it inevitable, but just as it's useful for people in a family tree with chronic blood pressure issues, it'd be useful for schizophrenia.
It's not the message, true; it's the attitude. These things you are saying are all things he very crucially did not mention. The only thing he did mention - indirectly at that - was to not take cannabis. To be fair, though, that seems like good advice.
TBH, this is why I kinda hate Scott Alexander, and only read Slate/Astral Star Codex and LessWrong when I'm forced to so I can understand what everyone is arguing about whenever his writing gets posted somewhere. He wades into these incredibly complex, ethically difficult, contentious topics, of which he is usually not a subject matter expert but still behaves as if he is an expert, seemingly without any consideration for the consequences of what he says or how he says it... as is typical of so many "rationalist" bloggers.
I don't disagree with your take on Scott Alexander or any self-described "rationalist" blogger, but that does feel like how discourse on the web works in general including here on Tildes. I myself often comment on topics like ethics, religion, and philosophy yet the only area I am a subject matter expert on is computer science (ironically a topic I'm not terribly interested in talking about in my free time.)
Though I suppose most of us don't have a blog. Is your thought that having reach or a platform increases one's responsibility with regards to accuracy?
Yes, exactly that. I also often comment on a wide variety of subjects here and elsewhere on the net, when the only things I have any real-world expertise in is IT, data recovery, and computer forensics related topics... although I do have a wide range of other long-time personal interests (e.g. military history) which I like to think I'm reasonably well-read and informed on as well.
But when all your posts are regularly read by tens-hundreds of thousands of people (or more) due to you/your platform being popular, and your posts also regularly get shared around the net (like Scott Alexander's are), IMO that person has far more of a responsibility to write properly well researched posts. And also be absolutely clear when they're not an expert on the particular subject they're commenting on, so are just speculating/theorizing, and/or sharing a personal opinion that could be based on faulty information or assumptions. And when the subject is also incredibly complex, ethically difficult, and their stance is potentially contentious/controversial, or goes against the general consensus of actual subject matter experts, that person should also consider how sharing their non-expert opinions on that subject might influence others in a potentially negative way.
p.s. I think we do all have some of that same responsibility, BTW, just to a much lesser extent since we're not broadcasting to tens/hundreds of thousands of people. So it's a lot less vital we caveat absolutely every opinion we might share here. But even our comments here can have a negative effect on others who read them, so we should still be try to be careful what we say and how we say it. Remember the human; Don't be an asshole; And all that still applies.
I think there is an absolute moral imperative to increase quality/verifiability with reach.
I have 2 quick thoughts on this:
It occurred to me there might be a kind of blogger-to-journalist spectrum here, where words and intent and knowledge base and precision and expertise all become increasingly important as reach/audience expands. (Also worth examining how this becomes more difficult)
Money runs pretty much exactly opposite to quality/expertise/precision. Not only is it more expensive, but after (admittedly) only reading 1/2 of this article I figured out this guy’s trick is just throwing out semi-intelligent sounding straw-man arguments. To me it reads like pseudo-intellectual clickbait, not an actual honest discussion. It’s veiled hot button topic writing designed to spur exactly this engagement. I can’t tell if this piece can be declared to have been written in bad faith, or if I’m just angry after taking a hard look at it.
Yep. I feel like that's pretty much Scott Alexander's schtick. Just look at his post on slurs from last year, which should tell you absolutely everything you need to know about him. IMO he's a pedant, contrarian, and polemicist of the highest (and most obnoxious) order, and I haven't read much by him that hasn't made me either roll my eyes, facepalm, or sigh heavily while shaking my head. The look of disapproval, ಠ_ಠ, is what I feel like 90% of his writing deserves in response.
Sometimes he writes about things he's not in expert in, but in this case that's not true. He actually is a psychologist and he's treated people for schizophrenia. It seems like he's talking about things he knows pretty well?
But it's definitely true that he is being repeatedly misread by Tildes users, and that results in unfounded accusations. I'm not sure how much of that is his writing style and how much is that people here already have in for him. Somehow other people come up with wild misreadings that I don't. I had hoped for better.
As a psychologist he may know about diagnosing and treating schizophrenia, but I think the biggest problem here is the tangents he goes on into areas outside his wheelhouse (bioethics, genetics, epidemiology)... and especially near the end when he wanders into eugenics debate territory. So is it really any wonder why him doing something like that would upset people here, and undermine the rest of the points he's made in his post since that's where it felt like it was all leading to?
And in nearly every piece of writing of his I've read he has gone off on similar kinds of wild tangents, and advocated for all sorts of other questionable things as well, which has repeatedly left a bad taste in my mouth about him. So yeah, I and many other here are likely biased against him, and are perhaps not giving him the full benefit of the doubt when reading his writing, but it's not entirely without reason.
p.s. I've ignored this topic now, and added
author.scott alexanderto my tag filters. Ironically, reading his posts and online discussions on them is not good for my own mental health, and so I'd prefer to simply avoid him from now on.I think if a bunch of fairly reasonable people interpret his message in a particular way it's sort of incumbent on the author to address that. I had no idea who he was, and still don't, so it wasn't "having it in for him".
I don't think it's reasonable to insist that everyone disagreeing with you on this is engaging in bad faith, misreading, or making unfounded accusations.
They aren't being reasonable in this case. I'm telling you, it's not there. Read it again if you don't believe me. Or, since it's a long article, search on "eliminate" and "population." There's a reference to "eliminate the risk entirely" but nothing about doing that in an entire population.
Misreading what someone else wrote is a thing that happens sometimes. I've done it myself in this very conversation.
I don't think he said anything about eliminating the population. I think his suggestions and offhanded dismissal of others' concerns were incorrect.
His conversation and advocacy for screening out and thus disposal of embryos with the genes in question is what leads to the larger questions of "eliminating" groups of people with different disorders. Never mind that it isn't what he said, it's the ethical underpinnings of where his thoughts lead and it's an ethical question he dismisses poorly IMO.
I don't think he's being misinterpreted, I think most people don't have a stake in whether schizophrenia is called genetic or not*, it's what we do with that label that matters. And he dipped his toe into that without a lot of forethought. I replied to those because I think they were particularly poorly considered.
If I'm wrong and you think I've misread him, I'm happy to discuss, but I feel like you're more unhappy that the conversation fixated on that part of the article? Imo it's because that portion was so egregiously privileged/dismissive that it was worth addressing.
*I think it's not on the mark for a number of the other thoughts brought up but eh, it's a label.
Well, it's true that he could have been nicer about it. It seems like it should be possible to write the case for more awareness and education about the availability of prenatal testing for schizophrenia in a way that doesn't push people's buttons. And maybe he would have, if this weren't an aside in another article about something else?
It's not about being nice. He chose to include several paragraphs on the testing, spoke in authoritative tone, overstated the case for testing as well as the availability and ease of access for it, and then dismiss the concerns of disability rights advocates. It was also part of the quoted material in the comment here.
I think it's more than a simple aside and shouldn't have been included at all if he couldn't handle the topic with the respect that one would think it would deserve. I've never read anything else by him to my knowledge, but others have noted that this tends to be in his style, I think that this is a problem with his communication and not a failure of the Tildes community.
But that's just my opinion. I do think you're being unfair however, in your presentation of everyone else's interpretation of his work.
To pick one of those things: "dismiss the concerns of disability rights advocates" sounds pretty rude, but the substantive side of that is: what are those concerns, how valid are they, and what more do we need to consider?
But I think this conversation has gone on long enough, so I'm not going to go deeper. Some other time, maybe.
It’s definitely bad news in most ways. But as I often emphasize, we don’t know the future. Just because it’s partially genetic doesn’t mean it’s destiny. Many people with a genetic disposition don’t get it. Possibly, research into about why that is will help prevent it?
Facing up to bad news is important in certain circumstances. How much is it worth to you to reduce the chance of your future children (if you have any) from getting it?
Mu. I'm not in a position to spread my genes for a number of reasons. My only sibling is much the same. Childhood was not a good time for us and we are not willing to subject anyone else to the things we went through.
Schizophrenia is hardly the worst thing that can happen to you. If I were to have kids, I don't know if I'd want to do polygenic screening. Reading through that webMD article, it seems that it's good enough to simply teach them to live a good and healthy life, which will benefit them in many more ways than attempting to select their genes. Sure, it's harder and more expensive, but I'd argue that it's the minimum that you owe them.
Well, I don't know about that. Some people seem to cope quite well with it. Others, like my brother, are paralyzed by anxiety and paranoia, unable to work, poorly supported financially and ostracized by much of society. This is with medication, psychiatrists, social workers etc. My brother has always been compliant with whatever treatment they gave him and still, his life has just sucked for decades.
That's very fair. It would be a farce to say that my father's schizophrenia didn't affect him, but it's not like it prevented him from ever being happy. I wrote my comment that way because people tend to catastrophize these kinds of things, so I wanted to bring a sense of perspective.
I'm reading through this but suicidal ideation and attempt is more complex than internal factors alone. I'm not dismissing the experience of schizophrenic people in the slightest but it's worth noting that this logic would also argue for the elimination of transgender people and is often used as proof of trans people's inherent "brokenness" or that transgender identities are inherently harmful.
We don't do well at managing schizophrenia, this study even shows that hospitalizations can increase suicidality, but that says we need better treatments and to treat people with mental illnesses better in general. I know you're coming from a very personal place and I'm not saying your experiences aren't yours or aren't valid. I'm just not convinced that eradication is possible nor where doctors should spend their efforts even if it were to be the ideal.
It might be valuable to clarify that it is fairly known and accepted by both the public and the medical community that outcomes are generally determined by a combination of genetics and environment. I am unaware of the prevalence of this "genetics only" mindset that you seek to oppose. There are indeed many actions to take in order to improve health outcomes. At the same time, it is important to understand that the prevalence of genetic factors in determining these outcomes varies greatly between conditions. Some may be entirely determined by environmental factors while others may be predominantly determined by genetics. Which doesn't mean that we cannot take action to mitigate genetically determined conditions, or contemplate their sociological aspects and implications.
It's very hard to see this comment as anything other than deliberately obstinate. I agree with most of what you say but this thread is literally about an article that talks about schizophrenia being "mostly genetic". And unfortunately this conversation does not just exist in a scientific context but is deeply philosophical, political, social etc. There are a variety of podcasts you can find talking and supporting some form of eugenics, some hidden behind facades of science or economics.
In my experience, I had an argument with a friend because he was talking about poor people being genetically predisposed to being poor, an opinion he got from a very popular podcast that I can't remember the name of now.
Mostly genetic isn't all genetic, and what other people say about other things in random podcasts is getting pretty far off-topic.
Right. So you don't like the insinuation that this is related to eugenics? My intention is obviously not to start a conversation about podcasts.
This is an incredibly interesting and controversial topic for a lot of reasons. The author may be an expert, he does cite sources but this is still just an article. Similar to lots of people talking on podcasts. People are great at making up elaborate scientific or religious or whatever justification for unethical positions they hold. I've worked in social services and been given lots of reasons why we shouldn't care for disabled, homeless, indigenous or impoverished people. Genetics of bla bla bla is a very common excuse.
It's true that this is just one article, but it's the one I posted and I was hoping to have a better discussion about it. Or maybe not much discussion at all? I just thought it was interesting to share and didn't think too hard about what sort of conversation there would be. Maybe if I did I wouldn't have posted it, or would have done more to get the conversation started on the right foot.
It's also true that people sometimes have terrible eugenics-related discussions, as you've given examples of.
Eugenics is extremely controversial, though. It's a rather big distraction to bring it up. Is prenatal screening for schizophrenia too boring?
Topic drift is normal in conversation, but this particular kind of topic drift towards more controversial ideas that are sorta-related is rather frustrating. It sounds like you don't like that kind of talk either.
I can't but notice that it's Tildes posters causing it to happen, though. Bringing up odious ideas in order to condemn them is still bringing it up. I don't think there are any actual eugenicists here or anyone on Tildes arguing in favor, but they're present in spirit, in people's imaginations, because we've seen them elsewhere.
Ya, point taken. In my mind this issue has 2 categories: nature vs nurture and the pragmatic ethical issues of prenatal screening.
This is already a practise with a fetus with down syndrome genetic mutation. I have worked with people with disabilities and I would never judge someone for making that decision in either direction. Same for schizophrenia. It can be a terrible disease. One implication then becomes if the option to know increases societal or familial pressure to abort. Or if someone has schizophrenia, should they just not be allowed to pass their genes at all?
He seems to have a strong opinion on prenatal screening being the best intervention but this is simply not the reality of the world. If it's an option for some families, fine. I don't know what the percentage of IVF births are but I'm going to assume it's low. For a family trying to have a baby for 2 or 5 years are they really going to prenatal screen and terminate a pregnancy for the risk, even assuming it's as high as he says it is?
Again I wouldn't judge anyone who took the opportunity to screen. I do think it's dangerous for medical professionals to start recommending it.
Who is telling women whether they can give birth or not? If it's the state, this is crossing the line between family planning and coercion, and all I can say is that we should strongly support women's rights. Family pressure is a serious issue, though.
Also, there's no single gene for schizophrenia. It's a combination of slight tendencies from hundreds of genes, and each fertilization is another roll of the dice. The idea is that if the results don't look promising, you can roll again. Easier to do with IVF, admittedly. Yes, some will choose to stick with what they got and take their chances.
"I am unaware of the prevalence of this "genetics only" mindset that you seek to oppose."
This is an extremely patronizing and dismissive sentence especially, and at risk of repeating myself, since this is what the article is about. Then using Reddit as an insult (I guess?) is not helping your case. Be the change you want to see as they say. You also never responded to me beyond the "insult".
Do I need to respond to "broad generalizations" by pointing out that it was not broad, it was only your reply? I did not intend on getting into a personal argument but you, in particular, not in general, seem to be very obstinate.
I'm very surprised that you haven't heard of people who think about genetics this way. It's certainly less popular than it used to be, but it still exists. It's a bit of a personal pet peeve of mine because it tends to be something of a roundabout fatalism.
Absolutely. I thought I addressed that in my original comment but perhaps I didn't make it clear enough.
I don't know where I land on the opinion over all yet but I had a few thoughts on this part.
That IF you're already doing IVF is doing some heavy lifting. Just under 2% of births are from IVF. Especially considering the other risk factors, it seems quite likely that the people who can afford IVF and choose to go through with the process are an incredibly small subset of our parents of potentially schizophrenic children. A "few hundred dollars" is not reflective of the total cost. (And isn't zero, so it doesn't help poor folks at the highest risk anyway)
Also, if the risk only halves then you still do have to worry about all of those other triggering risk factors. Cutting the risk in half isn't nothing obviously, but it isn't being eliminated, despite the assumption that soon we can eliminate it entirely. Which I think is another assertion going unquestioned by the author. It's optimistic IMO.
Given the absolutely low percentage of IVF births, it makes absolute sense to me why doctors aren't recommending "preventing" schizophrenia instead of treating it. The reality of their patients, even their patients planning to have children is not one where preconception screening is an option.
I do also think the disability advocates have reasonable concerns about eugenics when it comes to IVF screening. But I'm also sympathetic to the fact that our society does not provide enough support for parents of people with serious medical or mental health conditions nor those people when they become adults. It's an ethical morass.
But of course this is always what these "it's not eugenics I swear" arguments for "preventing" diseases and disorders boil down to -- they don't want to treat it or make life better for people who have it. Especially with schizophrenia, they don't see them as people. To them, schizophrenia is like lycanthropy -- for a while you're a human and then suddenly you're a terrifying non-human monster. They don't want to treat schizophrenia -- they want to use eugenics as a silver bullet so they never have to deal with the "problem" of people with ugly mental illnesses that scare them.
I fully agree. And I always have to wonder what else you lose if you lose schizophrenia. Do we lose creative genes? Do we lose artists? Prevalence of those genes are higher in creative professions.
It'd be nice I suppose to remove all human suffering. But who is to decide whose existence is suffering?
The author (and several others in the comments here) also seems convinced that this method will just casually lead to elimination of schizophrenia solely through elective selection prior to birth. Even in the best case scenario where IVF and genetic screening are free and the genetic screening 100% eliminates the possibility of developing schizophrenia -- either of which is a pipe dream currently -- this policy doesn't come close to eliminating schizophrenia solely through willing IVF participants with genetic screening.
Do they think people with schizophrenia (not even to mention those with underlying genetic risk but no schizophrenia) are going to just never become pregnant naturally? That they're always going to want to abort when that happens? Surely even in the most rosy scenario for this policy it's going to require this to happen almost universally if we actually want to eliminate schizophrenia. The world in which we eliminate schizophrenia solely through willing choices by to-be parents is a fantasy.
Especially after reading the comments on the post about whether schizophrenics should be allowed to refuse medication, I cannot believe anyone (especially not someone like the author of this article) believes that "preventing schizophrenia" in this way doesn't come alongside denial of bodily autonomy for schizophrenic people. You think those who approve of forcing someone with schizophrenia to take antipsychotics without their consent is going to flinch at also forcing them to take contraceptives without their consent? Or get a vasectomy without their consent? These people are already dehumanized and denied personal autonomy constantly. You think a push to prevent schizophrenia in this way isn't going to lead to more denial of bodily autonomy in the same way that treating schizophrenia already does?
Other than being a distraction, I see nothing particularly wrong with expressing the vague hope that someday there won't be children born with a genetic predisposition for schizophrenia. This seems pro-parent and pro-child; who would wish that on their children?
But that's quite different from thinking it's going to happen any time soon. It isn't the same as advocating for it as a practical goal. As you say, it's rather unlikely. (But we don't know the future.)
It's practical, though, for some parents to do it now, if they're aware of it.
Also, whose consent are we talking about here? Prenatal screening isn't about infringing on the rights of anyone who has already been born. Bringing up things like "denial of bodily autonomy" in a discussion of prenatal screening seem rather confused. It's confusing the treatment of people already born (for whom genetic screening is irrelevant, except as parents) and parents' decisions about what children they will have.
(Meanwhile, a real-world danger for pregnant women is from governments who make abortion illegal, and might restrict prenatal screening too.)
I am not referring to the denial of bodily autonomy to anyone not already born. I am referring to the bodily autonomy of living people with schizophrenia. I thought referencing forcing them to take contraceptives or have vasectomies made that clear but sorry if that got lost in my previous comment.
The author of this article castigates his colleagues for caring more about treatment than prevention -- he calls it "odious". But encouraging people who are already getting IVF to get genetic screenings is not going to eliminate schizophrenia from the gene pool. Not even close. The effect would be miniscule. The actual methods you would need to employ to get even close to preventing schizophrenia like this are abhorrent things that would have to be forced on people with schizophrenia without their consent.
Okay, thanks for clarifying. I did miss that.
I don’t believe it’s true that force is necessary for many women to want to avoid passing on genes that predispose their children to have schizophrenia. The idea of eliminating schizophrenia is utopian, but since we’re dreaming, perhaps someday IVF will be cheaper, easier, and more common? Alternatively, it’s true that more prenatal screening might result in more abortions, but if that happens it’s because women decide that it’s for the best.
And population genetics aside, for any given woman, this is a potentially life-changing intervention that could have a dramatic effect on their family’s future. That’s the real reason to make it more available, the individual benefits, not the large-scale “gene pool” stuff that probably won’t work anyway. It seems like reason enough to promote prenatal screening for schizophrenia? (Not that I’m going to do it myself; I’m no expert and I don’t know how well it works.)
Taking a discussion of better family planning and saying, “oh, you must want to take away women’s reproductive rights” is what I object to. I suspect people weren’t thinking about it in quite that way, but this is effectively what happens in some discussions of genetics, because people are reminded of eugenics whenever anyone discusses population-level genetics.
Although this discussion was rather annoying, I do think that it helped me clarify some issues. I hadn’t fully connected the dots on women’s rights and genetics before.
I'd be more amenable to viewing the author's position as just a discussion of better family planning and that the elimination of schizophrenia through just those means is intended to be a utopian fantasy... if he didn't call doctors who focus on treating schizophrenia odious for not prioritizing prevention over treatment. You don't generally prioritize utopian pipe dreams over treating existing living patients, and I don't think most people would consider it odious ti do so.
I'm not against women having abortions for any reason, including likelihood of passing on certain diseases. I definitely understand the benefits it would have on an individual level -- I don't intend to present improving access to genetic screening like this as bad. But when the idea of eliminating schizophrenia through genetic screening is presented as so important that it is odious not to prioritize it above treatment, you inevitably have to deal with the inefficacy of this. Sure, many women would be perfectly willing to abort a fetus that had a high chance of developing schizophrenia as an adult. But that doesn't actually address how you deal with those that wouldn't under those circumstances, and I don't think it's fair to pretend that this population is so insignificant as to be written off. Especially given how willing many people already are to override the bodily autonomy of those with schizophrenia, as well as the not-so-distant history of using forced sterilization on undesirables, it is absolutely justified to have some big doubts about someone fervently arguing for prioritizing eliminating schizophrenia through genetic screening. It's not just a question of genetic screening itself in that context.
From my perspective, either he's arguing for something even he must know would be utterly ineffective and insulting his colleagues' moral character for not considering it more important than treating schizophrenic patients, or he believes that this ineffective method would be the first step in a more effective program and left the details of this more effective follow-up unspoken. Either way I think his perspective is hugely flawed.
I didn’t read it that way at all. When he’s talking about effectiveness, he’s pretty clearing seeing it from an individual perspective, rather than some master plan to rid the world of schizophrenia:
Some context that’s not in the article: his wife recently gave birth to twins. I’m guessing this is all from the perspective of someone who just went through that process (maybe they used IVF?) and wonders why this screening isn’t recommended more often.
I don’t see anywhere in the article where he even talks about the possibility of eliminating schizophrenia in a population? That “eliminate the risk entirely” is a bit vague but it seems to be meant for a hypothetical family who had some new, better screening done. That’s a lot different!
The idea that schizophrenia could be eliminated entirely seems to be a notion that was invented during our conversations on Tildes?
Ah I do think the context that he and his wife just had kids (and twins are more likely from IVF, though that's ofc speculating) makes the framing make more sense. Rereading the article, I still think the way he frames prioritizing treatment over prevention as bad is wrong, but I think it's clearer that this is in response to researchers not sharing their genetic data with screening companies. I do think that he too quickly brushes off the implications of what he argues for -- I don't think it's enough to day this just "reminds people of eugenics" and otherwise ignore the potential for abuse there. But rereading the article I can see more clearly that he is probably not thinking about it through that lens himself and that he himself is probably just thinking about doctors encouraging couples with high risk factors to get genetic screening.
Unlike most of the people in this god-forsaken thread I know many people with schizophrenia. I know people who cope with very small doses of meds and who live hearing voices, I know people who had good experiences with EIP services, I know people who've never been hospitalised. But I also know people who were hospitalised, who are on high doses of harmful meds, who've been medicated against their will by force, who've been subject to state-sanctioned violence in hospital, people who've had forensic involvement in their care and were sent to hospital by the courts. I know women who had their children removed by the courts because of their mental illness, I know people who were (and still are) street homeless because of their schizophrenia.
Over the past 15 years I've met hundreds of people with schizophrenia.
What you're saying here is you don't care at all about any of these people. You don't care that they love and are loved, you don't care that they're human, you don't care if they think their lives have value, you don't care if their loved ones think their lives have value, you don't care if society thinks their lives have value: you don't like them and so they should be eliminated.
This is literally Nazi ideology - read up on Aktion T4.
It's possible to express hope that unborn children won't have to deal with these things and also hope for better treatment, care, and respect for the people who do suffer from these things.
There's nothing contradictory about that at all.
It is so easy for humanity and society to loop back around to our worst natures.
To go a step further, to truly "eliminate" genetically caused disorders, granting the argument for a moment, you'd have to control everyone's fertility completely. Not just those with a known predisposition. Because it wouldn't stop with schizophrenia. It probably won't start there, tbh but it wouldn't stop. Our history of sterilizing perceived undesirables is disturbingly recent.
I do think that level of dystopia is a long way off - but it looms behind the arguments that fat people should fix themselves with a pill, that mentally ill people should be forcibly medicated, that people on welfare should be sterilized.
This has nothing to do with the actual article. You're talking about someone else.
This absolutely has something to do with the article (and even if it didn't, it's certainly got something to do with the comment I directly replied to). You're free to disagree with my perspective but it's simply inaccurate to say this does not relate.
My partner recently froze her eggs and part of that was both of us getting genetically tested to see if there was overlap of potentially harmful genetic traits. For women you need to be undergoing IVF, but for men you can at least know what traits you present for ~$200. I learned I am a carrier for a few things like kidney disorder, albinoism, and a few other things I can't recall. I think that would reduce your risk by quite a bit, knowing the risk of presentation if not selecting in the individual embryo.
I'm not gonna argue about doing the genetic testing on yourself if you want it, for sure, but I think the point was eliminating embryos that contained the undesired genetic markers.
Which is why, for what it's worth, I think it's weird that he's so dismissive about eugenics concerns.
It's not that weird if you know that there are a lot of bad arguments about eugenics out there.
I dislike articles that react to the worst advocates of the other side (rather than the best), but I can see how that happens.
It is weird to blow off legitimate concerns from disability advocates as "vaguely reminding them of eugenics".
Or perhaps it's not weird, it's just a bad take. But I think being dismissive is weird.
As I noted in another comment, I do not think that testing that impacts at best 2% of births is "best practices" for eliminating any disease and that focusing on treatment is absolutely key. His solution is not practical and isn't a solution. It's one tool but it's a tool that won't fit within many people's moral framework to begin with. It's not simple pre-natal testing it's pre-implantation testing, in vitro. (In-vivo testing would be a whole other can of ethical worms but it wasnt clear that's what he's recommending.)
I appreciate you woke up in a bad headspace but I'd love it if you'd show me where I'm being callous to the suffering of others or said the word "genocide" much less compared it the two.
I don't want people to suffer unnecessarily, but to completely eradicate a genetic disease would require full control over the fertility and bodily autonomy of every generic carrier. That would be violating innumerable human rights for essentially entire populations.
As I said, if someone wants to get tested or add testing on to their IVF sure, they should. But it is no solution.
I am genuinely very empathetic to living with mental illness, chronic pain, and the like. I do myself. But I don't think it's any individual's place to say that everyone with any diagnosis is better not being born. Even as improving treatment and prevention is critical.
The idea of eliminating schizophrenia at a population level via genetic testing seems to be something invented by Tildes members in conversation, not something in the original article.
Prenatal testing can be justified as being useful for family planning (your kids are less likely to get schizophrenia), regardless of what anyone else does. That's why it may sometimes make sense for doctors (who are supposed to considering what's best for their patients, individually) to recommend it.
I've noted that there's absolutely reasons to get prenatal genetic testing done. But what was suggested in the article was not that. As previously discussed.
Hey take care of you. I didn't take your comment personally, I just wanted it to be clear where I was coming from. I think the author of this article proposed bad solutions that are dismissive of the concerns raised in the comments. That doesn't erase the real life struggles you and others deal with.
You’re right, he’s being very optimistic there, though who knows, maybe there will be medical advances that bring costs down?
I still think it’s wrong not to mention the possibility in documents meant for high-risk families. It may not be practical in any given situation, but they should still be informed since prevention is generally far cheaper than treatment.
When it comes to IVF it may not be. I'm not saying it shouldn't be mentioned but for an author that dismissed all the other ways to address risk factors as meaningless/impossible etc. it's dishonest to pretend that this is the answer when it's not feasible for most Americans. Perhaps IVF is paid for more in other parts of the world, but even in states where it is covered here, I'm not sure it's covered for anything but infertility.
Doctors have to do best practices for their individual patients and also providing general advice on the population level. If their patients are going through IVF I'd hope they'd offer the option to do this sort of screening, not just for schizophrenia but for any genetic markers the couples want. Offer but not force. This doesn't get into how stressful IVF is for infertile coupes which
But if there are 24 million people with schizophrenia today, and (forgive the assumptions of a normative distribution) 2% of them were statistically born with IVF, and using this screening to discard embryos drops you down to half the rate of schizophrenia. This would reduce the number of people with the schizophrenia by 240,000. That's not nothing but also about 20% of folks with this diagnosis report favorable outcomes on the lowest end of those surveys I could find. So that's 192,000 people out of 24,000,000 with the diagnosis who escape possible unfavorable outcomes.
(Which gets messier in that it's not technically the same people born but again, approximating. AND knowing that triggers for schizophrenia in those with the genetic predisposition are more common among people with less money and less healthcare access, skewing these numbers more)
This is not something worth blaming doctors for not promoting to patients not already seeking fertility treatment. This is not a solution. And it is absolutely flavored like eugenics and his dismissal of it is a red flag to me.
It's good to know that you basically agree about genetic screening. I don't think genetic screening has to be a solution for it to be a good thing?
I think reducing what I said down to "basically agree about genetic screening" is ignoring most of what I wrote as well as my criticisms of the original article. Had he said "people should offer genetic screening when applicable" instead of "it's super easy and just a few hundred bucks if you're already privileged to be spending thousands or tens of thousands and should be the focus of doctors rather than treatment and also why would anything think this is eugenics?" then I would have written way less and perhaps you could summarize my point so.
Sorry, I wanted to point out something we agree on and was sloppy about saying what it is. To rephrase that, I'm glad you're not against genetic screening under the right circumstances.
I think you misread the article; I don't see anything in there that says treatment for schizophrenia is bad or shouldn't be funded. (A psychiatrist arguing against psychiatric care would be rather odd!) He is saying that it's expensive and often doesn't work.
I didn't say he said those things.
He actually specifically argues that the idea of treatment over prevention is a bad idea, after advocating nearly solely for genetic screening and dismissing most alternative prevention mechanisms for what I think are reasonable criticisms taken too far. Called it "odious". It's actually not that weird to have random doctors arguing against evidence based practice. I don't know his credentials, and though I believe he comes from a place of concern for patients I think he's being obtuse on the topics I've mentioned.
If your only "reliable" prevention method will impact 1% of the schizophrenic population I would argue it shouldn't in fact be the priority.
Maybe I don't understand the point he's trying to make here, but voluntary or not, this is essentially eugenics. I think most people that are uncomfortable with the idea of screening for something like this are uncomfortable because of a perceived slippery slope. If screening for Schizophrenia becomes okay, what about autism? ADHD? I don't have an answer to this, but I do think that listening to bio-ethicists when they are uncomfortable with a practice is probably a good start...
Yeah I'm aware of genetic screenings available during pregnancy, and I'm uncomfortable with the idea in a way that I have trouble articulating or really explaining. On the face of it, it seems like giving parents the option of terminating a pregnancy in the event of an extremely debilitating condition is a good thing that reduces suffering, but it gives me a feeling of unease that I'm not sure that I can really defend. Because of that, I wouldn't try to tell someone else that they are wrong for taking those steps, but my wife and I did avoid those screenings because of that discomfort (both mine and hers).
Yeah I'm familiar with sex selective abortions. To be perfectly clear, I am not in favor of reducing access to abortion, even elective abortion, but it does seem like it can create some problematic situations when certain traits are desirable over others. And in this example it's hard to be overly critical, because schizophrenia is a really difficult thing to deal with. I'm not proposing banning anything, I'm just trying to express some discomfort with this practice that feels very much like eugenics when you look at it on a large scale.
Where I come down in the balance is that society does not provide adequate supports to parents of disabled children and parents of disabled adults with high support needs. If those supports were actually adequately provided I think I'd have a greater ethical issue with the practice of gene selection/selective termination than I already do. But I think even then bodily autonomy weighs out in the individual, even if I think certain genetic selection shouldn't be a matter of acceptable medical practice.
Is it true that there's a German law that says that a woman may have an abortion for any reason she damn well pleases, so long as she does not say it's because the fetus would have genetic abnormalities/non-fatal birth defects (to prevent eugenics)? That may be merely one of the "facts" that all terminally-online people of a certain age has learned.
If it's a law it's highly unlikely to be a German one, as the abortion laws here are pretty strict to begin with. Abortion is only legal up to 12 weeks unless it's a risk to the health of the mother, and mandatory counseling is required. Up until quite recently it was illegal for doctors to advertise that they offered abortions either. Contraception isn't even covered by public health insurance here unless you're under 22.
Whether it’s eugenics depends on definitions, but I think he’s taking it as something forced on others (for example, by the state), by analogy with selective breeding on animals. The dictionary definitions don’t say this directly, but they do talk about large-scale changes to populations, which requires a lot of power.
By contrast, genetic testing is something parents choose for their families, and I think we should support reproductive rights.
People do have concerns from slippery slope arguments, but this is often a form of whataboutism, that is, bringing up nearby subjects that are not the same thing. It’s very easy to go off-topic since there are other uses of genetic testing that are more problematic, but I don’t think we should let that get in the way of curing schizophrenia? It would be clearer to discuss each use separately.
Perhaps some bioethicists have better arguments. I think that’s better handled by linking to them? It’s hard to give much credit to an argument you haven’t read.
Yep. There are a lot of things that could improve quality of life for the world if you cede control of basics rights to a benevolent authority. The issue becomes when the authority is no longer benevolent.
I don't think there's any clear line. In terms of legality, though, I would generally defer to the parents - if they want such screening, it's up to them. It'd be their child, and they would bear the burden of childcare in the end.
You can read the article for the arguments, but later on he writes about why this matters:
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