3 ms·

It reads like a specific genome would lead to deterministic outcomes. It does not. Life is messy. Most Down Syndrome people have happy lives, some can even liv

• arjie 4mo ago
  With pre-implantation genetic testing, a sufficiently large number of embryos, and a sufficiently small number of children desired, it's just a ranking question. A pair of parents with 6 embryos, and 2-3 children desired will likely just try their most viable embryos first. One can argue that they should try the embryos that carry known conditions before they try the ones that don't, but I can't imagine under what ethical structure that is desirable. As for trisomy-21, if we wish to increase the rates in the future we can stop performing pre-implantation testing and the MSAFP and nuchal translucency and so on. After all, even if we abort all embryos that carry the markers today, new such embryos will be formed in the future since it comes from non-disjunction so selection pressure once removed will allow it to return.
• inglor_cz 4mo ago
  Most cannot live alone and their parents have to take care about a huge, powerful 100 kg baby that needs constant attention until its death. My friend from elementary school has had a Down kid at 19. She takes it well, but managing a grown-up man five times as strong as her (she is petite) when he decides to do something like "take his bicycle and ride on a busy highway" is exhausting. This is why most people abort Down fetuses.
  • fabbbbb 4mo ago
    Does this make sense to you and her? Does she wish the kid would not have been born?
    • akie 4mo ago
      Such an inconsiderate and loaded question. Screening an embryo that could not survive outside the womb and deciding to stop the pregnancy based on the results is not the same as "wishing the kid wasn't born".
      • fabbbbb 4mo ago
        What are you talking about? Down Syndrom LE is 60 years.
        • nkrisc 4mo ago
          And in some cases that means 60 years of support that needs to be provided. I can understand why some people would not choose that.
    • StefanBatory 4mo ago
      I knew people who had to take care of their children for their entire life, since they never grew up mentally above 6-years old kid. Answer I heard is hushed "Yes".
    • inglor_cz 4mo ago
      She is the sort of very optimistic and energetic person that she does not mind most of the time. But she is a bit sad about her decision not to have any other children - her first kid was just too much to handle, and she wouldn't be able to take care of another one, even if healthy. This is also a hidden cost of having a Down's baby - given how exhausting the care is, other kids either get less attention, or don't get born at all. Also, the father skedaddled. Allegedly this happens quite often with unhealthy kids...
    • Gareth321 4mo ago
      I'm sure she wishes her child had not been born with a debilitating disorder which usually requires a lifetime of care and comes with major health issues and suffering.
  • teruakohatu 4mo ago
    In my country people with Down syndrome often live in housing together in suburban areas, with a social worker keeping an eye on things (independent living) or a carer available 24/7. They do sports, catch the bus, go to neighbourhood bbqs etc. Your depiction of a person with downs is not representative of the majority.
    • dana-s 4mo ago
      > In my country > Your depiction of a person with downs is not representative of the majority. It may be for a different country, both experiences are valid to hear. In my country as far as I know it doesn't happen like yours.
    • inglor_cz 4mo ago
      I am not an expert on Downs kids to know how majority looks like (are you?) Here in CZ, I knew of one preCovid cafe that employed adult Downs as waiters, and they absolutely needed supervision most of the time - cannot take the complicated Prague public transport alone. Maybe it is different in rural settings where there is just one bus line that never changes its course. That said, prospective parents usually don't make their decisions to abort or not to abort on an expected median outcome, but some of the more pessimistic-but-realistic scenarios.
    • Forgeties79 4mo ago
      I’m fairly certain your depiction is not representative of the majority experience throughout the world. I can’t say for 100% certain but I struggle to believe what you’re describing is more common than not. That strikes me as a level of support provided by the state that most people with ds - and their family - do not enjoy throughout the world.
      • teruakohatu 4mo ago
        > I can’t say for 100% certain but I struggle to believe what you’re describing is more common than not. This is absolutely common in New Zealand. I think treating people with dignity, respect and part of the community is as important as state financial support. Our government will also subsidise wages in certain industries for people with certain disabilities. So it’s common for people with intellectual disabilities to be working at supermarkets.
• nkrisc 4mo ago
  People born with Down syndrome deserve all the respect and dignity any other person does. I have two kids. If I could have chosen whether or not they would be born with Down syndrome I would choose would “without” every single time. If either of them were born with it I would love them the same but I would never choose it, if I had the choice to make.
  • onion2k 4mo ago
    The point the OP is making is that given the choice parents will always choose a 100% 'perfect' child who will live a happy and long life free from things that make it difficult. Until relatively recently this hasn't actually been a choice though - as much as you'd like that, you've not been about to tell much about the long term future of a foetus so you got what Mother Nature blessed you with. Increasingly though, parents can check, and they are doing, and that means they're getting to pick whether or not to carry a not-quite-perfect baby to term. Many are choosing to terminate and try again. Right now it's for obvious things like Downs, but the scope for what parents choose to terminate can, and probably will, escalate to other detectable problems. The question is where that ends. Terminating due to a susceptibility to aggressive cancer? Maybe. Due to lower intelligence? Perhaps. Lower physical strength? Probability of autism? Unsymmetrical facial features (e.g. 'ugliness')?
    • hhjinks 4mo ago
      Neither the OP nor you give a reason for why that's bad. I want my child to have all possible advantages in life. I'm sure most people want that. Why shouldn't we select for that? I'm interested in hearing an argument that doesn't go into anti-abortion territory.
      • moron4hire 4mo ago
        It's an anti-reproductive rights argument. You have to first accept the premise that a fetus is a person. Once you've done that, then the premise that a fetus is a person seems obvious.
      • onion2k 4mo ago
• XorNot 4mo ago
  I would not bring a child into this world knowing they would die an early, painful death, at best leaving behind a family and children of their own without a parent themselves. Potential people aren't actual people though either.
• NotGMan 4mo ago
  The toll it takes on parents and siblings, based on stories one reads, must be horrible. You destroy the life of the family and greatly make the lives of healthy children harder. Why would you sacrifice your healthy children for one who has no real future? Complete inversion of common sense.
  • arcticfox 4mo ago
    "has no real future"? I.e. not a net-productive member of society? Fun fact, machines are taking everything over, so you and any "healthy children" may be in that same camp very soon. IMO, anyone capable of living happily while being outcompeted by machines is well-adapted for the future. I'm not; average Down's Syndrome folks seem to be.
    • balfirevic 4mo ago
      > anyone capable of living happily while being outcompeted by machines is well-adapted for the future. > I'm not Why not?
• codedokode 4mo ago
  The future is with gene editing to fix invalid genetic code. However, the owners of good genes probably won't give them away for free so it would be available only to the riches.
  • otikik 4mo ago
    How are they going to prevent stealing of genetic code? With copyright? See how that went with AI.
    • codedokode 4mo ago
      This is why you should never consent to DNA collection because they will just keep it and sell it later without paying you a cent.
      • RealityVoid 4mo ago
        You know what? Good. If there is something good in it they can have it. Probably not a whole lot in my case, but still, if this enables people to have better lives, let them go at it!
        • otikik 4mo ago
          It's not good. They can sell it to insurance companies as well. Who might decide not to provide you with health insurance based on your genetic profile.
          • RealityVoid 4mo ago
            Yes, I agree that is not good. But that is a thing the people need to fight politically for to not be allowed. My main gripe is that OP's post sounded like screw the people who's lives that would improve because I wouldn't get paid for it.
• RealityVoid 4mo ago
  > lead to basically 0% Down Syndrome Oh, the horror. Listen, you have no idea what these people went through and judging them for not wanting to go through the same thing is shitty.
• Sammi 4mo ago
  It's not fair to people with Down Syndrome to romanticize and downplay their suffering. They all have to suffer with a strong disease their whole lives. Many are much to sick to part of "normal life" and we never see the really sick ones in public. We really only see the few one's that are doing exceptionally well. The rest are institutionalized. Many still die young. Many require invasive surgeries during early childhood.