6 ms·

I have very conflicted feelings about this sort of thing. On the one hand, Down's syndrome can make life very hard, for both the person with it, and their carer

• c048 6mo ago
  The full diversity of life sounds wonderful, as long as you're not the one suffering painful, disfiguring or crippling conditions.
  • voidUpdate 6mo ago
    I am the one suffering from multiple of those conditions
    • anhner 6mo ago
      I'm sorry to hear that. So would you like others to suffer from them as well if given the choice?
      • voidUpdate 6mo ago
        If they had the choice to not suffer, and they wanted to take it, then I think it's their decision to make, and not anyone else's
        • Cthulhu_ 6mo ago
          But the moral conundrum here is that they can't choose untill well after they're born, meaning the parents are the ones that need to make the decision.
        • ceejayoz 6mo ago
          This is one of those situations where the child will likely never get the choice, for the same reasons we don’t require informed consent for being born or getting your diaper changed. By the time they can make it, it’s too late.
        • bit-anarchist 6mo ago
          I would to add onto what others have said by mentioning that omission is still a decision. Even if the parents didn't explicitly choose, the inaction comes with dire consequences towards the child, whose parents are responsible (and held accountable) for taking care of.
    • MSFT_Edging 6mo ago
      Not to downplay, but is it wrong to assume you're self sufficient in daily life? Work a job and pay your bills? You list your site and have a seemingly lots of professional experience. Some of these conditions do make life harder, but there's a big difference between high functioning Autism and disabilities that make someone 100% dependent on others.
      • flextheruler 6mo ago
        It's so odd to me that we haven't come up with a term for high functioning autism to separate from low functioning. It's ridiculous to me that a commenter with this background can superficially claim to be suffering from the same disability as a family member I have who has required a caretaker to not die and would probably be totally uninterested or unable to even give an opinion on a complex subject like this. I cannot recall why Asperger's as a term was dropped or deemed controversial, but this is the equivalent of stolen valor but for mental illness especially when used to justify an argument. How is it any different than people with obsessive compulsive tendencies claiming they have OCD? There's a huge difference.
        • fisherjeff 6mo ago
          Dr. Asperger may or may not have been sorting autistic children into high- and low-functioning groups so that the higher group (with “Asperger’s”) could go on to become good Nazis and the lower group could be euthanized. https://en.wikipedia.org/wiki/Hans_Asperger https://en.wikipedia.org/wiki/Hans_Asperger
        • CalRobert 6mo ago
          Perhaps including milder forms of autism under the term was a useful way to reduce funding for the intensive care and therapy required by those with more severe forms (e.g. the nonverbal), since we can now frame these things as “changing who they are” etc. and not, in fact, necessary.
          • MSFT_Edging 6mo ago
            Many children who primarily have intellectual disabilities will be categorized under the "Autism Spectrum" because funding has been applied for "Autism", and not "vague learning disability". If the doctor checks the Autism box, it opens a huge swath of support networks in certain states. I don't blame anyone for lumping their kid in. I think it's more of a massive failure for social funding that hyper-categorizes due to means-testing.
• exe34 6mo ago
  I've always thought we should maintain a list of people like you. Every time we cure something, like blindness in one person, one of you gets picked and your eyes get poked out. That way the total amount of suffering will be conserved, but those who think that's necessary get to be the ones who pay the price for their beliefs.
  • voidUpdate 6mo ago
    In the first half of my comment, I explained that I don't think people should suffer. I'm just also aware that if everyone can pick their child's attributes, it could lead to a nation of blond-hair, blue-eyes kids
    • mmustapic 6mo ago
      Would you pick blond hair, blue eyes for your kids? Would black people pick it? Asian?
      • voidUpdate 6mo ago
        I wouldn't, but I can imagine a lot of people would
        • mmustapic 6mo ago
          If you wouldn’t, why would a big chunk of the population do it? And if they did it, so what? Why is blonde and blue eyes bad? Btw, I also wouldn’t if I could choose.
    • exe34 6mo ago
      No it wouldn't. If these traits were everywhere, then they would no longer be exclusive and therefore would lose their appeal. There is nothing inherently "hot" or "attractive" about blond hair or blue eyes.
• dpiers 6mo ago
  We already live in a world where parents decide whether or not a child with Down Syndrome will be born. 60-90% of prenatal diagnoses in the US result in an elective termination. The number is nearly 100% in Iceland and some other Nordic countries. Unlike autism or ADHD, we have a very clear understanding of exactly what causes Down Syndrome and now potentially how to correct it. A treatment like this is no different from correcting a congenital heart defect - it gives a baby a chance at normal, healthy development.
  • Qem 6mo ago
    > it gives a baby a chance at normal, healthy development. And a chance of not being killed in utero. Abortion for Down is sad, because despite cognitive impairment and health complications, their lifespans are long, and emotional development is quite spared by the syndrome. They can be very affectionate and sociable, despite the impairment. Abortion for them feels like death penalty for being dumb.
    • falcor84 6mo ago
      I don't think that this is about being "dumb", but rather about being able to support oneself. Becoming a parent and taking on the responsibility to support a child financially and emotionally for 18 years as you gradually prepare them for independent life is already a massively difficult decision, particularly when looking at the worldwide decline in birth rates. Expecting people to knowingly and ahead of time take on responsibility for a child who most likely will never be able to support themselves and a raise their own family seems really unreasonable to me.
  • rob74 6mo ago
    Ok, that just leaves us with another quandary: deciding whether to terminate the pregnancy (hoping that the parents will get a "normal" child on the next try), or let the child be born and use this (no doubt very expensive) therapy to cure it? Not sure medical insurers would cover it? Maybe Christian anti-abortion groups will donate money for this therapy to parents who choose to have a child with Down syndrome? OTOH, they might consider that interfering with God's will to have an impaired child be born?
• mkesper 6mo ago
  You got to weigh this against abortions for unborn children diagnosed (maybe even wrongly, the tests are really not that exact) with Down's syndrome. The slippery slope already began a long time ago probably.
  • robertjpayne 6mo ago
    By week 20 there is practically no chance you're not going to know if you're carrying a baby with downs or not unless you refuse all the modern screening/tests available. NIPT tests can be done at week 8 and give a very high indicator that can be followed up with close monitoring/invasive tests at week 14-15 that give a 99% accuracy. That's hardly "are really not that exact".
    • simiones 6mo ago
      Per Wikipedia, Down's syndrome currently occurs in ~1 in 1000 live births, and used to occur in 2 in 1000 live births some decades ago, in the USA. That means that a test with a 1% false positive rate (99% accuracy) will lead to a false positive for 98-99 healthy embryos per 1000 live births. I would say that this is fair to call "not all that accurate". Note: I am not in anyway saying that this means that people shouldn't trust the tests, or anything like that. Just reminding everyone that a test's accuracy has to be compared to the incidence of the disease to decide if it's high or not.
      • dyauspitr 6mo ago
        > lead to a false positive for 98-99 healthy embryos per 1000 live births. The number you’re looking for is 9, not 99
        • simiones 6mo ago
          Oops... Off by one [order of magnitude]...
      • codytruscott 6mo ago
        Screening ‘test’ vs diagnostic ‘test’ is an important concept. Screening tests are designed for sensitivity — false positives are expected and identify who would benefit from additional diagnostic tool and procedures.
• lofaszvanitt 6mo ago
  What are you talking about? WHAT are you talking about?
• fainpul 6mo ago
  I understand the concerns, but some things just make life much harder. I would definitely want to spare my child from living with autism, ADHD and certainly Down syndrome, given the choice. It's not like we're talking about choosing eye color, height or gender here.
• Tade0 6mo ago
  Not to downplay your situation, but this is Down's syndrome we're talking about, so a whole menagerie of both physical and mental conditions, including, but not limited to: higher risk of epilepsy and heart failure, aside from almost universal infertility in men. It's a serious disability even today decreasing life expectancy by 10-15 years. One may have different opinions regarding the quality of life of these people while they're alive, but I think we can agree that 60 years is a short lifespan for a human. EDIT: also main point of eugenics, which seems to be not widely understood, was that the state would decide both what kind of children are born and who gets to have them. It was not unheard of to take sufficiently "aryan"-looking newborns from their "inferior race" parents and give them to "master race" adoptive parents. This lack of agency on part of biological parents is a core tenet of eugenics.
• poulpy123 6mo ago
  Of course gene editing has the potential to go very wrong, and will almost certainly go very wrong. But trisomy 31 is a well defined genetic defect with heavy consequences on the person having it and his or her entourage and there is no ethics preventing to correct the issue even if the technology used can be also used for nefarious means. It would be like not using dynamite for freeing miners in a collapsing mine because in the future there will be bombs made from dynamite targeting children.
• igleria 6mo ago
  What would be the difference between curing a fetus versus a newborn? Isn't editing out the bad gene better than just aborting gestation? For the person gestating too, since going through an abortion is psychologically damaging
• deleted 6mo ago
  [deleted]
• azan_ 6mo ago
  I'm sorry but if elimination of crippling disease sounds like eugenics to you, then you should deeply think about your moral compass. Comparing autism (I guess some mild form since you put it next to ADHD) and ADHD to Down's syndrome shows that you are completely clueless. I'm sorry for the harsh tone but your comment is absolutely awful and has zero empathy towards people (and their caretakers) suffering from condition much worse than what you are going through.
  • ceejayoz 6mo ago
    For where this gets complex, you can look at the Deaf community. Crippling disease? Or normal variation in humanity? There's significant debate, and a lot of Deaf people really bristle at the idea of eliminating their identity.
    • azan_ 6mo ago
      I think autism (mild one) is not a bad area for this discussion either. But Down's syndrome? Absolutely not.
      • ceejayoz 6mo ago
        I tend to agree, but like autism, Downs varies in severity. That we permit (and widely practice) pregnancy termination makes it an easier call for me, though.
• throwatdem12311 6mo ago
  Natural Selection might as well be called Natural Eugenics. I have people in my family with Downs. It made the early pregnancies for every one of my children a terrifying ordeal. Luckily my children were all born perfectly healthy. I love my family members with it, but their lives have been so much more difficult than they needed to be. It’s not just massively difficult for the disabled, it financially ruined their parents and their care is also a massive tax burden on the community. If we can eliminate a crippling disease by “just” turning off a gene we should absolutely do it. The alternative is aborting them as soon as it is detected, and even then it isn’t always caught in-utero. I have worked with people will all sorts of disabilities my entire life. I can confidently say that if I asked any of my blind or deaf colleagues that if they could take a simple gene therapy so they could see/hear again that they would do it without hesitation. Why would Down Syndrome be any different? I can’t think of a single valid argument against it other than “eugenics bad”. We aren’t talking about Nazi-era human experimentation here.
  • api 6mo ago
    As I said in another comment, eugenics is state authoritarian control of reproduction and fertility (with the extreme version being genocide). There are very few people with a disability who wouldn’t want it to have been prevented or cured. “A healthy man has many dreams. A sick man has only one.”
    • mwcampbell 5mo ago
      > “A healthy man has many dreams. A sick man has only one.” I'm partially blind, and I know many fully blind people. None of us have being sighted as our one dream.
      • throwatdem12311 5mo ago
        Maybe not a “dream” but if you could essentially take a shot and have your version back, wouldn’t you? I only need to wear glasses but I’d do it in a heartbeat.
• thinkingtoilet 6mo ago
  Ignore commenters trashing you. It is very ok to have conflicted feelings about something like this. I think this is a good thing but understand where you're coming from. Let me tell you my family's story. I have a brother with developmental disabilities. Not Down Syndrome, but something similar. He (and I) were lucky enough to be born into an upper-middle class family where my brother went to a school where people were kind to him and where services were available. Despite everything going about as well as it could, it still is a major tax on my family. Constant fund-raising for the home he's living in. Major medical problems through out his life. Things like that. When I agreed to kids with my wife it was on the condition that we do genetic testing and abort the fetus if there was an issue. My mother has invested her life into this child and loves him more than anything. One day we were talking about death and I casually said something along the lines of "as long as I don't see you at <brother's name> funeral" I'll be ok. Implying she should die first so she doesn't have to deal with the sadness of seeing him die. She then said that she wanted my brother to die first. I was stunned. I asked why. She said she wanted to know he was taken care of. It completely floored me. People with Down's (and similar disabilities) can bring so much joy into this world. They can live very happy lives. I understand how it can be hard for people who don't have my experience to feel like you're feeling. However, I wouldn't wish it on anyone. And I think it's a good thing for society to stop babies being born that are so disabled they'll never be able to take care of themselves. Just my two cents.
• TeMPOraL 6mo ago
  > On the other hand, this feels a bit like eugenics, and a slippery slope towards designer babies where you can pick and choose their attributes. We can discuss pros and cons of freedom of choice of genetics for your children (an opposite spin on the same idea as calling it "designer babies"), but eugenics is a thought-terminating cliche at this point. There's whole space of useful genetics-based treatments and interventions that do not imply involuntary sterilization of people one group deems lesser.
  • api 6mo ago
    The best thing to do with the term eugenics is to define it specifically as authoritarian control of reproduction. Voluntary acts aren’t eugenics, otherwise you get absurd things like free choice of mates being eugenics because you are choosing, or any medical treatment being eugenics if it touches genetics or reproduction. Eugenics should be defined as meaning only authoritarian (directly or via state backed “social engineering”) forms.
  • ben_w 6mo ago
    While I agree with you that it's a thought-terminating cliche, I would caution that humans have historically been very inaccurate with knowing what traits specifically are good vs. bad, while also very strong on enforcement of ingroup/outgroup and purity dynamics. We could all be hyper-muscular (from that Myostatin gene) and have tetra-chromatic vision*, but that leads to the joke about how "in the future there will be three genders: kpop, furry, and tank", where kpop represents normative beauty standards, furry represents self-expression, and tank represents hyper-optimising for niche goals like being strong. On the more near-term impacts, before we're ready for me to get turned into an anthro-wolf, if we all end up with our genomes subject to regular updates like our software currently is, some of us are inevitably going to face our cells getting bricked while we're still made of them. * I don't know how that works so here's the wikipedia page: https://en.wikipedia.org/wiki/Tetrachromacy#Humans https://en.wikipedia.org/wiki/Tetrachromacy#Humans
• iLoveOncall 6mo ago
  Congratulations, you just won the trophy for most privileged comment on the web!