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This is interesting news, for the lack of a better word. I've met more than one person with downs syndrome. They have definitely enriched my life and shown me a
by juujian 1y ago
This is interesting news, for the lack of a better word. I've met more than one person with downs syndrome. They have definitely enriched my life and shown me a different way of looking at the world.
- whatshisface 1y agoWhat's better for them should be the overriding concern and that's to have a normal development.
- RajT88 1y agoI am not advocating any course in particular. But I will observe that when such treatments become available, such conditions become a marker of lower socioeconomic class and the people with the conditions get treated less well by society. This is why we need a better healthcare system.
- loeg 1y agoIt's hard to imagine a treatment cost so high that it wouldn't be worth the USG paying for it. Down syndrome kids and adults have some quantifiable economic cost; normal adults are worth some other quantifiable economic benefit; the difference is going to be significantly more than the cost of treatment.
- macintux 1y agoIt's hard to imagine a treatment cost so low that the USG would pay for it.
- zem 1y agothe us government is often driven not by cost/benefit analysis, but by the horror of someone poor getting something without "deserving" it
- leptons 1y ago>Republicans are often driven not by cost/benefit analysis, but by the horror of someone poor getting something without "deserving" it FTFY
- School-Cotton 1y agoThe US government is not one person or a small set of people with a coherent strategy making decisions based on cost-benefit analysis. It’s an extremely complex emergent system whose properties can only be understood by studying them empirically, not by appealing to arguments about what a human would think is worth it or would make sense.
- labster 1y agoAnother statement that I would have simply accepted as fact a year ago, but now I believe is false. The US government is now primarily one person, and occasionally a small set of people, making cost-benefit decisions on what will benefit themselves more. The complex system is mostly gone, soon to be washed away, in favor of layers of patronage and favoritism. Much simpler.
- School-Cotton 1y agoThat is not true. Lots of things Trump wants the government to do have not happened (random example: stopping the grant of birthright citizenship to the children of illegal immigrants and other non-permanent residents), precisely because he does not fully control it. Maybe he will someday, but he doesn’t yet.
- loeg 1y agoThis isn't responsive to my comment.
- bee_rider 1y agoI believed they interpreted your post as pointing out the straightforward cost-benefit analysis (with an implication that it seems likely that we’d end up behaving according to that analysis). And they are pointing out that our government often doesn’t behave in a way that is compliant with a straightforward analysis. It doesn’t seem like a very out-there interpretation of your post, maybe it is wrong, though. In particular the implication that I’ve got in parenthesis is, for sure, reading between the lines and maybe wrong. But I don’t really get the response of “This isn’t responsive to my comment.” It doesn’t seem to move the conversation forward or clarify anything. Seems like a dead-end. What’s the point?
- vtbassmatt 1y agoI don’t think I entirely disagree with your position. However, positioning my kid (and others with DS) in opposition to “normal” makes it hard to engage respectfully. As a parent of one typically-developing child and one with Down syndrome, I feel qualified to say they both come with quantifiable economic costs. Quantifiable economic benefits are pretty far in the future for both of them (they’re 11 and 8, if it helps ground my points).
- jedimastert 1y ago> It's hard to imagine a treatment cost so high that it wouldn't be worth the USG paying for it. Given that this is also true of universal health insurance and the US government also doesn't pay for that...
- bpt3 1y agoThey (we) do, just for groups that incur the highest medical expenses on average. Why we can't just open up Medicare to all is beyond me, adding on the portions of the population who are on average the healthiest (and who are already paying for the people on it) would not push up the cost significantly.
- wyldfire 1y agoI don't know if it's the case for folks with Down Syndrome (I suppose it's likely not), but hearing-impaired folks have their own culture to the point that in the past it was seen as some as a betrayal to the community to seek out cochlear implants. I think having their own language does a lot to create unity among them. All that above is to say that I wonder if some folks in Down Syndrome might actually prefer their status quo abnormal development?
- scheeseman486 1y agoDown syndrome has significant developmental effects beyond mental impairment, lifespans are considerably shorter and while that's improving that doesn't take into account quality of life, medical complications are almost inevitable.
- cogman10 1y agoThe mental impairment shouldn't be understated. We are talking about people that will perpetually need care and supervision. Don't get me wrong, I think it'd be great if society could give these people more than poverty after their parents die, but as it stands, unless that person was born into wealth they are looking at misery when the state becomes their caretakers. I have a child with a server mental disability, I love them pieces, but frankly what happens to them after I'm gone is one of my biggest concerns. That's the hard reality I wish people hand wringing about the ethics of avoiding down syndrome would confront. It's one thing to call them a blessing, but are you going to push and advocate for government spending so these blessings don't end up in a hellhole when they are no longer cute children?
- vtbassmatt 1y agoThis starts from an incorrect premise — that everyone with Down syndrome “will perpetually need care and supervision” — and then heads downhill. “Misery” and “ends up in a hellhole” are choices society has often made in the past for people with intellectual disabilities, but they aren’t a law of physics or fundamental moral law. What are the ethics (and societal obligation) of supporting someone who’s had a severe stroke? Or how about a traumatic brain injury from a car accident? Oxygen deprivation from near drowning? If these are different from a congenital condition like DS, why?
- barbazoo 1y agoWhat is “normal development”? And doesn’t that describe the process, not the outcome? If the outcome is happiness, who knows who has it better?!
- jojobas 1y agoSuch that doesn't see you infertile and dead by 30.
- kaonwarb 1y ago>Today, the average life expectancy of a person with Down syndrome is nearly 60 years and continuing to climb. (https://www.nationwidechildrens.org/family-resources-education/700childrens/2021/07/down-syndrome-life-expectancy https://www.nationwidechildrens.org/family-resources-educati...)
- Supermancho 1y ago* for people who can afford healthcare in the USA
- 542354234235 1y agoLife expectancy is 58 "in the 2010s" [1], which is over 19 lower than average life expectancy in the same time period. Two decades isn't exactly insignificant. [1] https://kffhealthnews.org/news/article/adults-with-down-syndrome-health-system-unprepared/ https://kffhealthnews.org/news/article/adults-with-down-synd...
- UltraSane 1y agoNormal development starts with having the normal number of chromosomes. I would think this is elementary biology.
- barbazoo 1y agoI think of it as more of a probability question. There is a much greater chance of a person having two copies of chromosome 21 instead of three. "Normal" often carries some form of judgement but I guess technically you are correct to use the word.
- gerdesj 1y agoAs soon as someone starts ascribing towards a "normal" and using the pronoun "them", warning bells should go berserk.
- TechDebtDevin 1y ago[flagged]
- tumnus 1y agoThe word "them" has been used for centuries in cases where the writer may want to refer to a subject, or subjects, of no specific gender. I wonder why it's suddenly bothering you.
- jader201 1y agoI think the parent’s point was that “them” is referring to a group that is “other than normal”, and that that should raise caution. (Not agreeing or disagreeing, simply trying to infer the meaning.)
- jibal 1y ago“other than normal” Misquote. The statement was "What's better for them should be the overriding concern and that's to have a normal development".
- balamatom 1y agoAny time someone uses the word "normal", I reach for my wallet, to check if it's still there
- 123yawaworht456 1y agoThe heresy of heresies was common sense.
- dang 1y agoWe've banned this account for using HN primarily for ideological battle. Regardless of ideology, that's not allowed here. It's not what this site is for, and destroys what it is for. https://news.ycombinator.com/newsguidelines.html https://news.ycombinator.com/newsguidelines.html p.s. This isn't a response to this particular comment, but to the account's overall pattern of behavior, which is way over the line.
- nkrisc 1y agoI think there’s a difference between appreciating those among us who have it for their perspective and differences and wishing it upon your child. I admit I was absolutely relieved when pre-natal screening was negative for it, both times. But if that was the hand we were dealt, then I’d take it. But that doesn’t mean I want it.
- afavour 1y agoHonestly it’s confounding to even think about it. Aborting a fetus with Down’s syndrome? Feels cruel to deprive someone of life for that. But if it meant you went on to have another child you otherwise wouldn’t have then you’re giving life. I think at a certain point you can’t consider this stuff rationally.
- nkrisc 1y agoAt some point you have to choose an arbitrary line in the sand, or otherwise the universe is a single being. All lines are arbitrary.
- smeej 1y agoThe line between "haploid gametes" and "diploid organism" doesn't seem arbitrary. There's a clear and meaningful difference between a gamete and an organism from a biological perspective.
- colordrops 1y agoYou are not talking about the same thing as the person you are replying to.
- move-on-by 1y agoMy partner and I tested for it. We had a discussion and agreed a positive down’s result would not affect our decision to have the baby, but we were testing for other things anyway and it seemed like having the information earlier rather then later would help up prepare.
- UltraSane 1y agoThe mildest forms of Down Syndrome allow people to function in society but the worst forms are really bad. I knew a guy whose brother had a really bad from and was completely nonverbal.
- twixfel 1y agoLetting someone have Down’s when it’s avoidable just for the entertainment value is hardly moral.
- BrawnyBadger53 1y agoI don't think they were suggesting this
- twixfel 1y agoI realise that, but my point is that it’s completely irrelevant how enjoyable they sometimes are to be around. They’re people. It’s trivially in the best interests of the person not to be born with Down’s syndrome if possible.
- eleveriven 1y agoIt can shift your whole perspective if you're open to it