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It was well on its way to being eliminated in much of the First World through screening during pregnancy at around 2-3 months. Alot of mothers were electing t

It was well on its way to being eliminated in much of the First World through screening during pregnancy at around 2-3 months. Alot of mothers were electing to terminate the pregnancy and perhaps try again. Especially much of Europe which didn't quite have the moral objections against abortion that the US does, save for a few countries who still have substantial observant Catholics such as Ireland and Poland. Here's a story about Iceland https://www.abc.net.au/news/2024-05-01/iceland-prenatal-testing-down-syndrome-ethics/103781058 https://www.abc.net.au/news/2024-05-01/iceland-prenatal-test...

zarzavat 1y ago
> Some bioethics experts are concerned I do have to wonder what goes on in the minds of these people. My sister-in-law has a child with Down's syndrome and the situation basically ruined her life. She can no longer work, so they now struggle on a single income, if her husband were to leave her she would be completely screwed. To what end is that in the continuance of ethics?
- decremental 1y ago
  [dead]
- orbisvicis 1y ago
  I do wonder if the elimination of all genotypes with Down's Syndrome would also result in a significant reduction in beneficial or benign genes. I've had smart pets. I've never had children. I sometimes envision smart pets as like an X-year old child with Y-year old trait, almost as a person with a disability. If a child can't achieve independence and a life of their own, why let all parties suffer through that ordeal?
  - vtbassmatt 1y ago
    Why do you think people with Down syndrome can’t “achieve independence and a life of their own”? And what makes you think they, or their families, see their existence as suffering?
    - vicnov 1y ago
      because alot of times when they do it makes the news and because when it does happen.. it usually happens in (very few) "first world countries"?
    - orbisvicis 1y ago
      > Why do you think people with Down syndrome can’t “achieve independence and a life of their own”? Based on the anecdotes here. 5 in support, 3 against as of now. I wasn't expecting such a spread, so I did a bit of research. The cognitive problems, though possibly quite severe are not so as frequently as I had assumed. Whereas the medical complications tend to be commonly nasty. As for independence there's a lot of advocacy material claiming so, but reading between the lines and in conjunction with reddit and quota testimony, I suspect very few qualify. > And what makes you think they, or their families, see their existence as suffering? I'm sorry, what? Those with Down's Syndrome are people, with all the emotions and experiences that entails. If they are supported, nurtured and loved then they'll lead correspondingly happy lives.
      - vtbassmatt 1y ago
        > I'm sorry, what? Those with Down's Syndrome are people, with all the emotions and experiences that entails. If they are supported, nurtured and loved then they'll lead correspondingly happy lives. Heartily agree! My question was a reaction to the last line in the parent comment: > If a child can't achieve independence and a life of their own, why let all parties suffer through that ordeal? I’m sorry that I didn’t make that as clear as I could have. * * * I’ve seen the negativity on Reddit and, now, here. Some of that is based on historical reality: the standards for medical care and early intervention have dramatically improved outcomes for people with DS even just in my lifetime. It turns out that if you don’t believe a child is capable of, say, reading, then you don’t bother teaching them to read. This becomes a self-fulfilling diagnosis. And not too long ago, many kids with DS had inner ear damage from undetected ear infections, leading to hearing loss and difficulty communicating. As we learn more about what’s possible and what needs monitoring in kids with DS, long-term outcomes get better and better. This recent (~last 20-40 years) improvement means there’s still a visible cohort of people who didn’t receive that level of care and probably are less independent. But I’d also suggest that there’s sample bias in anecdotes on Reddit. Like with product reviews: the vast majority in the middle don’t bother to post, and negative experiences get more emotional traction than positive ones. The range of associated medical conditions is long and scary. But no individual gets all, or even many, of those conditions. And a lot of the scariest/most complicated stuff is correctable early post-natal (heart surgeries are common) or end of life (early appearance of dementia is unfortunately still the likely outcome for most people with DS). Medicine continues to make progress, and I think outcomes will continue to dramatically improve.
  - geysersam 1y ago
    I'm a bit torn on this. We're all dependent on other people one way or another. Individuals with Downs are more dependent, but it's a spectrum and they can still have meaningful lives. Meanwhile healty "independent" individuals can live entirely tragic and arguably pointless lives devoid of love and filled with anger. That said, I'm still pro screening for Downs in fetuses. What I'm trying to say is that I'd do the screening for me as the parent. Not for the person to be born.
- kulahan 1y ago
  Because it's a form of eugenics, however far down the spectrum it may be. edit: I mean to imply here that the overton window is shifted, basically.
  - llmthrow103 1y ago
    Dating apps and services with a beauty/salary standard and long prison sentences for the worst criminals are also a form of eugenics. Many kinds of societal and political changes have a eugenic or dysgenic effect on the population, and I'd prefer to live in a society that has more eugenic policies.
    - smeej 1y ago
      People in privileged or powerful positions often would.
      - llmthrow103 1y ago
        People have an aversion to the word "eugenics" because it's often connected to atrocity propaganda from World War II. I'm not suggesting that every country should have genetic purity tests and policies on the level of Israel, just that we should understand that policies affect what kinds of people are more likely to be produced.
        gabaix 1y ago
        What policies post World War II have had eugenic effects on the population?
        bregma 1y ago
        The policy forced sterilization of indigenous people that went on from the postwar period up until the start of the 21st century is an excellent example.
    - kulahan 1y ago
- lotyrin 1y ago
  Those sound like capitalism problems, not medical ones, to be probably too honest (HN doesn't generally vibe with class consciousness because so many tech bros sell out or dream of selling out one day, but). Society can afford to have support systems for people with disabilities and their supportive family, as evidenced by the fact that it is currently doing so indirectly (by paying enough for the husband's labor that he can make finances work for the three of them). The fact that the husband in your scenario bears all of that for everyone else (and it creates an unhealthy dependency in their relationship) because we only value the under classes for their contribution of labor is the problem, and is solvable.
  - LargeWu 1y ago
    Forget the economic aspect of it, what about the emotional and mental cost something like Downs Syndrome imparts, for both parents? I can't imagine any parent hoping they will have a child that will be utterly dependent on them for their entire lives. It's not at all to say they do not love their children as they are, but nobody seeks to become a parent hoping their child will have severe developmental disabilities. While some may choose not to terminate the pregnancy, I think most parents would think twice before conceiving if they knew with reasonable certainty before the fact.
    - shadowgovt 1y ago
      In a better-constructed society, that child isn't dependent upon them alone their entire lives. "It takes a village" isn't just about things like education. (I observe people struggling to care for elderly parents while also trying to be highly-successful rugged individuals and I'm struck by hoe, for want of a better phrase, anti-human that self-made goal is. Real people need help. In all stages of their lives. We have convinced ourselves that need is weakness).
    - smeej 1y ago
      I wonder how familiar you are with the reality of a life with DS today. Certainly some children with DS are dependent their entire lives, but others marry, have jobs, support themselves, teach others, etc. And on the whole, both individuals with DS and their family members report higher levels of happiness and satisfaction with their lives than others. I can say with absolute sincerity that if I happen to conceive a child with DS, I will feel like I won the genetic lottery. Not saying you do or should have the same values, but dismissing the experience of the families who do have these children in them because you have a different set of values that would make it undesirable for you isn't fair either.
- llmthrow103 1y ago
  I understand where they're coming from, but I believe it comes from a place of local and specific concern (the child with Down's syndrome) and not the wider impact. The way I think about it; 10-20% of known pregnancies (and a larger number of all pregnancies) end in miscarriage, the majority of which are due to genetic errors and chromosomal abnormalities that, unfortunately, mean the fetus wasn't viable to begin with. While some genetic defects don't kill the baby in the womb, the resulting baby is not healthy and will never be self-sufficient. Terminating these pregnancies lets the couple try again and gives the chance for another, healthy baby to come into the world, and possibly more because they won't have the burden of a many-orders-of-magnitude more difficult and perpetually child to raise.
  - jajko 1y ago
    It is a sound pragmatic logic (ignoring few corner cases), but people deciding things in such hard situation often don't decide purely on logic, if at all.
- smeej 1y ago
  Many ethicists value the continuation of someone's--anyone's--(literal) life over the continuation of anyone else's lifestyle. I'm not arguing whether you should or shouldn't agree with them, nor saying anything about in which cases. It's just one of the primary things going on in the minds of those people, and you said you wondered.
  - advisedwang 1y ago
    Down screening is done at like 16 weeks. At 16 weeks that's hardly a life. Also you are being very dismissive by hand-waving away lifestyle. Quality of life is a significant factor in medical decisions. Many people choose short high-qol lives over longer low-qol lives.
    - BalinKing 1y ago
      That’s a different argument though, because this scenario is specifically about weighing one’s life versus a different person’s lifestyle.
    - Thorrez 1y ago
      >Biologists from 1,058 academic institutions around the world assessed survey items on when a human's life begins and, overall, 96% (5337 out of 5577) affirmed the fertilization view. https://pubmed.ncbi.nlm.nih.gov/36629778/ https://pubmed.ncbi.nlm.nih.gov/36629778/
      - BriggyDwiggs42 1y ago
        It’s alive as a zygote, so without even looking at the paper I don’t disagree. The person you responded to said “hardly a life” though, so I don’t think they literally mean is it a cell that’s alive.
        Thorrez 1y ago
        It's a unique living organism. A life. Different from a skin cell which isn't a unique organism.
- lurk2 1y ago
  You’re talking about a human person and making the case that the world would be better off if they had never been born.
  - toomuchtodo 1y ago
    Yes, that is a legitimate argument to make in a cruel, uncaring (most of the time) world. Lots of regretful parents out there who would take it back if they could. All life is temporary. Quality of life for all involved is a material consideration.
    - lurk2 1y ago
      > Yes, that is a legitimate argument to make in a cruel, uncaring (most of the time) world. No, it isn’t. “I wish you didn’t exist because your existence inconveniences me,” is a step away from “I should be able to kill you because you inconvenience me.” You will likely think that I am being hyperbolic (“We’re just talking about if it was a good idea for these people to exist, not saying we should be able to kill them now that they do exist.”), but I suspect that you would not feel the same way if it was your existence being discussed this way.
      - deleted 1y ago
        [deleted]
      - margalabargala 1y ago
        Yes, very similar to how in the decades after abortion was legalized nationally in the US, it gradually northern to our current state where it is legal to kill your own children any time before they turn 18. Oh wait, no, that didn't happen, because in both your and my case it turns out humans are able to distinguish between life that is and life that might be. The "step" you mentioned is only a small one in a philosophical sense, enormous otherwise to the point of not being a concern.
        hypertele-Xii 1y ago
        It's happening in Canada right now. They are pressuring inconvenient individuals to take their lives.
- adaml_623 1y ago
  Does your sister-in-law have family who could support her and the child?
- jedimastert 1y ago
  > She can no longer work, so they now struggle on a single income, if her husband were to leave her she would be completely screwed. This is not inherent to Down's syndrome, this is because we live in a society that could easily support people but doesn't.
  - jabjq 1y ago
    It's very easy to ask everyone else to support your financial decisions.
    - therealpygon 1y ago
      It’s also very easy to expect the poor to subsidize your lifestyle by making $7.25/hr. Everything has perspectives.
      - bpt3 1y ago
        That's not how subsidization works at all. Until people like you figure that out, you're going to continue to be sorely disappointed with your political progress, because your "perspective" is not remotely logical.
      - nh23423fefe 1y ago
        Aren't you obligated to make sense though? Not just pretend you made a parallel argument?
    - unethical_ban 1y ago
      Financial decisions like renting a place to sleep in safety, or eating.
  - deleted 1y ago
    [deleted]
- deadbabe 1y ago
  Why didn’t she get screened? She didn’t have to carry to term, she did it to herself.
- deleted 1y ago
  [deleted]
- JesseMReeves 1y ago
  It is always about exerting control over female bodies. Not rational, but evolutionary residue.
  - JesseMReeves 1y ago
    ..and as expected, men here fail to get it. Their compulsive erasure of female voices across the internet is just the same impulse of control.
eleveriven 1y ago
On one hand, parents are making personal choices based on the information available to them... on the other, when nearly an entire population starts selecting against a certain condition, it starts to feel less like individual choice and more like a societal value judgment.
erifneerg 1y ago
According to a NYT article from 2022, there's a high false positive. Title: When They Warn of Rare Disorders, These Prenatal Tests Are Usually Wrong Authors: Sarah Kliff & Aatish Bhatia https://web.archive.org/web/20250712195745/https://www.nytimes.com/2022/01/01/upshot/pregnancy-birth-genetic-testing.html https://web.archive.org/web/20250712195745/https://www.nytim...

zarzavat 1y ago

> Some bioethics experts are concerned I do have to wonder what goes on in the minds of these people. My sister-in-law has a child with Down's syndrome and the situation basically ruined her life. She can no longer work, so they now struggle on a single income, if her husband were to leave her she would be completely screwed. To what end is that in the continuance of ethics?

decremental 1y ago
[dead]
orbisvicis 1y ago
I do wonder if the elimination of all genotypes with Down's Syndrome would also result in a significant reduction in beneficial or benign genes. I've had smart pets. I've never had children. I sometimes envision smart pets as like an X-year old child with Y-year old trait, almost as a person with a disability. If a child can't achieve independence and a life of their own, why let all parties suffer through that ordeal?
- vtbassmatt 1y ago
  Why do you think people with Down syndrome can’t “achieve independence and a life of their own”? And what makes you think they, or their families, see their existence as suffering?
  - vicnov 1y ago
    because alot of times when they do it makes the news and because when it does happen.. it usually happens in (very few) "first world countries"?
  - orbisvicis 1y ago
    > Why do you think people with Down syndrome can’t “achieve independence and a life of their own”? Based on the anecdotes here. 5 in support, 3 against as of now. I wasn't expecting such a spread, so I did a bit of research. The cognitive problems, though possibly quite severe are not so as frequently as I had assumed. Whereas the medical complications tend to be commonly nasty. As for independence there's a lot of advocacy material claiming so, but reading between the lines and in conjunction with reddit and quota testimony, I suspect very few qualify. > And what makes you think they, or their families, see their existence as suffering? I'm sorry, what? Those with Down's Syndrome are people, with all the emotions and experiences that entails. If they are supported, nurtured and loved then they'll lead correspondingly happy lives.
    - vtbassmatt 1y ago
      > I'm sorry, what? Those with Down's Syndrome are people, with all the emotions and experiences that entails. If they are supported, nurtured and loved then they'll lead correspondingly happy lives. Heartily agree! My question was a reaction to the last line in the parent comment: > If a child can't achieve independence and a life of their own, why let all parties suffer through that ordeal? I’m sorry that I didn’t make that as clear as I could have. * * * I’ve seen the negativity on Reddit and, now, here. Some of that is based on historical reality: the standards for medical care and early intervention have dramatically improved outcomes for people with DS even just in my lifetime. It turns out that if you don’t believe a child is capable of, say, reading, then you don’t bother teaching them to read. This becomes a self-fulfilling diagnosis. And not too long ago, many kids with DS had inner ear damage from undetected ear infections, leading to hearing loss and difficulty communicating. As we learn more about what’s possible and what needs monitoring in kids with DS, long-term outcomes get better and better. This recent (~last 20-40 years) improvement means there’s still a visible cohort of people who didn’t receive that level of care and probably are less independent. But I’d also suggest that there’s sample bias in anecdotes on Reddit. Like with product reviews: the vast majority in the middle don’t bother to post, and negative experiences get more emotional traction than positive ones. The range of associated medical conditions is long and scary. But no individual gets all, or even many, of those conditions. And a lot of the scariest/most complicated stuff is correctable early post-natal (heart surgeries are common) or end of life (early appearance of dementia is unfortunately still the likely outcome for most people with DS). Medicine continues to make progress, and I think outcomes will continue to dramatically improve.
- geysersam 1y ago
  I'm a bit torn on this. We're all dependent on other people one way or another. Individuals with Downs are more dependent, but it's a spectrum and they can still have meaningful lives. Meanwhile healty "independent" individuals can live entirely tragic and arguably pointless lives devoid of love and filled with anger. That said, I'm still pro screening for Downs in fetuses. What I'm trying to say is that I'd do the screening for me as the parent. Not for the person to be born.
kulahan 1y ago
Because it's a form of eugenics, however far down the spectrum it may be. edit: I mean to imply here that the overton window is shifted, basically.
- llmthrow103 1y ago
  Dating apps and services with a beauty/salary standard and long prison sentences for the worst criminals are also a form of eugenics. Many kinds of societal and political changes have a eugenic or dysgenic effect on the population, and I'd prefer to live in a society that has more eugenic policies.
  - smeej 1y ago
    People in privileged or powerful positions often would.
    - llmthrow103 1y ago
      People have an aversion to the word "eugenics" because it's often connected to atrocity propaganda from World War II. I'm not suggesting that every country should have genetic purity tests and policies on the level of Israel, just that we should understand that policies affect what kinds of people are more likely to be produced.
      - gabaix 1y ago
        What policies post World War II have had eugenic effects on the population?
        bregma 1y ago
        The policy forced sterilization of indigenous people that went on from the postwar period up until the start of the 21st century is an excellent example.
  - kulahan 1y ago
lotyrin 1y ago
Those sound like capitalism problems, not medical ones, to be probably too honest (HN doesn't generally vibe with class consciousness because so many tech bros sell out or dream of selling out one day, but). Society can afford to have support systems for people with disabilities and their supportive family, as evidenced by the fact that it is currently doing so indirectly (by paying enough for the husband's labor that he can make finances work for the three of them). The fact that the husband in your scenario bears all of that for everyone else (and it creates an unhealthy dependency in their relationship) because we only value the under classes for their contribution of labor is the problem, and is solvable.
- LargeWu 1y ago
  Forget the economic aspect of it, what about the emotional and mental cost something like Downs Syndrome imparts, for both parents? I can't imagine any parent hoping they will have a child that will be utterly dependent on them for their entire lives. It's not at all to say they do not love their children as they are, but nobody seeks to become a parent hoping their child will have severe developmental disabilities. While some may choose not to terminate the pregnancy, I think most parents would think twice before conceiving if they knew with reasonable certainty before the fact.
  - shadowgovt 1y ago
    In a better-constructed society, that child isn't dependent upon them alone their entire lives. "It takes a village" isn't just about things like education. (I observe people struggling to care for elderly parents while also trying to be highly-successful rugged individuals and I'm struck by hoe, for want of a better phrase, anti-human that self-made goal is. Real people need help. In all stages of their lives. We have convinced ourselves that need is weakness).
  - smeej 1y ago
    I wonder how familiar you are with the reality of a life with DS today. Certainly some children with DS are dependent their entire lives, but others marry, have jobs, support themselves, teach others, etc. And on the whole, both individuals with DS and their family members report higher levels of happiness and satisfaction with their lives than others. I can say with absolute sincerity that if I happen to conceive a child with DS, I will feel like I won the genetic lottery. Not saying you do or should have the same values, but dismissing the experience of the families who do have these children in them because you have a different set of values that would make it undesirable for you isn't fair either.
llmthrow103 1y ago
I understand where they're coming from, but I believe it comes from a place of local and specific concern (the child with Down's syndrome) and not the wider impact. The way I think about it; 10-20% of known pregnancies (and a larger number of all pregnancies) end in miscarriage, the majority of which are due to genetic errors and chromosomal abnormalities that, unfortunately, mean the fetus wasn't viable to begin with. While some genetic defects don't kill the baby in the womb, the resulting baby is not healthy and will never be self-sufficient. Terminating these pregnancies lets the couple try again and gives the chance for another, healthy baby to come into the world, and possibly more because they won't have the burden of a many-orders-of-magnitude more difficult and perpetually child to raise.
- jajko 1y ago
  It is a sound pragmatic logic (ignoring few corner cases), but people deciding things in such hard situation often don't decide purely on logic, if at all.
smeej 1y ago
Many ethicists value the continuation of someone's--anyone's--(literal) life over the continuation of anyone else's lifestyle. I'm not arguing whether you should or shouldn't agree with them, nor saying anything about in which cases. It's just one of the primary things going on in the minds of those people, and you said you wondered.
- advisedwang 1y ago
  Down screening is done at like 16 weeks. At 16 weeks that's hardly a life. Also you are being very dismissive by hand-waving away lifestyle. Quality of life is a significant factor in medical decisions. Many people choose short high-qol lives over longer low-qol lives.
  - BalinKing 1y ago
    That’s a different argument though, because this scenario is specifically about weighing one’s life versus a different person’s lifestyle.
  - Thorrez 1y ago
    >Biologists from 1,058 academic institutions around the world assessed survey items on when a human's life begins and, overall, 96% (5337 out of 5577) affirmed the fertilization view. https://pubmed.ncbi.nlm.nih.gov/36629778/ https://pubmed.ncbi.nlm.nih.gov/36629778/
    - BriggyDwiggs42 1y ago
      It’s alive as a zygote, so without even looking at the paper I don’t disagree. The person you responded to said “hardly a life” though, so I don’t think they literally mean is it a cell that’s alive.
      - Thorrez 1y ago
        It's a unique living organism. A life. Different from a skin cell which isn't a unique organism.
lurk2 1y ago
You’re talking about a human person and making the case that the world would be better off if they had never been born.
- toomuchtodo 1y ago
  Yes, that is a legitimate argument to make in a cruel, uncaring (most of the time) world. Lots of regretful parents out there who would take it back if they could. All life is temporary. Quality of life for all involved is a material consideration.
  - lurk2 1y ago
    > Yes, that is a legitimate argument to make in a cruel, uncaring (most of the time) world. No, it isn’t. “I wish you didn’t exist because your existence inconveniences me,” is a step away from “I should be able to kill you because you inconvenience me.” You will likely think that I am being hyperbolic (“We’re just talking about if it was a good idea for these people to exist, not saying we should be able to kill them now that they do exist.”), but I suspect that you would not feel the same way if it was your existence being discussed this way.
    - deleted 1y ago
      [deleted]
    - margalabargala 1y ago
      Yes, very similar to how in the decades after abortion was legalized nationally in the US, it gradually northern to our current state where it is legal to kill your own children any time before they turn 18. Oh wait, no, that didn't happen, because in both your and my case it turns out humans are able to distinguish between life that is and life that might be. The "step" you mentioned is only a small one in a philosophical sense, enormous otherwise to the point of not being a concern.
      - hypertele-Xii 1y ago
        It's happening in Canada right now. They are pressuring inconvenient individuals to take their lives.
adaml_623 1y ago
Does your sister-in-law have family who could support her and the child?
jedimastert 1y ago
> She can no longer work, so they now struggle on a single income, if her husband were to leave her she would be completely screwed. This is not inherent to Down's syndrome, this is because we live in a society that could easily support people but doesn't.
- jabjq 1y ago
  It's very easy to ask everyone else to support your financial decisions.
  - therealpygon 1y ago
    It’s also very easy to expect the poor to subsidize your lifestyle by making $7.25/hr. Everything has perspectives.
    - bpt3 1y ago
      That's not how subsidization works at all. Until people like you figure that out, you're going to continue to be sorely disappointed with your political progress, because your "perspective" is not remotely logical.
    - nh23423fefe 1y ago
      Aren't you obligated to make sense though? Not just pretend you made a parallel argument?
  - unethical_ban 1y ago
    Financial decisions like renting a place to sleep in safety, or eating.
- deleted 1y ago
  [deleted]
deadbabe 1y ago
Why didn’t she get screened? She didn’t have to carry to term, she did it to herself.
deleted 1y ago
[deleted]
JesseMReeves 1y ago
It is always about exerting control over female bodies. Not rational, but evolutionary residue.
- JesseMReeves 1y ago
  ..and as expected, men here fail to get it. Their compulsive erasure of female voices across the internet is just the same impulse of control.

eleveriven 1y ago

On one hand, parents are making personal choices based on the information available to them... on the other, when nearly an entire population starts selecting against a certain condition, it starts to feel less like individual choice and more like a societal value judgment.

erifneerg 1y ago

According to a NYT article from 2022, there's a high false positive. Title: When They Warn of Rare Disorders, These Prenatal Tests Are Usually Wrong Authors: Sarah Kliff & Aatish Bhatia https://web.archive.org/web/20250712195745/https://www.nytimes.com/2022/01/01/upshot/pregnancy-birth-genetic-testing.html https://web.archive.org/web/20250712195745/https://www.nytim...