It would be interesting to understand what people with down syndrome feel about this. Would they all want what makes them unique turned off?
Most people with down syndrome live happy, fulfilling lives. A google search will show studies that show 99% are happy with their lives. E.g.
https://www.downsyndrome.org.au/about-down-syndrome/statisti...
99% of people with Down syndrome were happy with their lives; 97% liked who they are; 96% liked how they looked; 99% expressed love for their families; 97% liked their brothers and sisters; 86% felt they could make friends easily.
It's fantastic that we've reached a point where Down syndrome isn't a rather imminent death sentence, and that people are able to live fulfilling lives despite their disability.
But it's still a profound disability that leads to health complications that necessitate significant medical interventions to achieve a lifespan that's still reduced by ~10 years. Only about a third of the afflicted can live by themselves.
But it's only possible for them to lead good lives when their parents basically dedicate the rest of their own lives to caring for them, I think?
> Most people with down syndrome live happy, fulfilling lives.
Correction: the people with Down Syndrome who are capable of meaningfully responding to the question answered a certain way on one survey. Down's affects different people differently. There are plenty of people who don't have the mental facilities to understand the question, let alone respond.
I've seen this kind of argument with autism, too. People here on HN will point out that they were diagnosed with autism and still have rich, meaningful lives. I don't doubt that for one moment! Still, my family lived next to a family with a profoundly autistic, nonverbal kid, and their lives were hard. The parents are lovely people but they were at their wits' end dealing with the consequences of his condition. When people talk about nebulous things like "a cure for autism", they don't mean a way to help the HN folks who have jobs and friends and families. They're talking about my next door neighbor who liked to take off his pants and run around naked outside.
I imagine it's the same here. There's the occasional news story about someone with Down Syndrome graduating college and getting married. They're doing fine. It'd still be nice to find a way to help those who'd never be able to make it to kindergarten.
99% doesn't make sense, not even 99% of people without Down syndrome are happy (far from it I believe).
That 99% number is wrong.
Additionally, it should set off alarms that the argument implies we should give people Down Syndrome.
Using it to argue against helping people with Down syndrome is worse.
The authors spell out why its wrong. [1] Their sample was exclusively from DS nonprofit mailing lists, got a 17% response rate, with a median household income of $100K, (2x median), and as they wrote, the results are likely "a positive overrepresentation" because people with severe problems are least likely to participate.
On top of that, decades of research [2][3][4] document that people with intellectual disabilities disproportionately answer "yes" to whatever you ask them, and this survey had "Yes" as the first option on every scale. If you take the number at face value, people with DS are the happiest demographic ever measured, crushing the OECD average of ~67% [5].
Using happiness to argue against helping people is wrong because it papers over what Down syndrome actually is, a physical ailment. About half of people with DS have congenital heart defects. Alzheimer's incidence exceeds 90%. Life expectancy is around 60 [6][7][8].
And the suffering isn't contained to the individual. My sister was disabled. It consumed my family. Research confirms this isn't unusual: parents of children with DS show significantly elevated stress [9], siblings become caregivers young [10]. A self-reported happiness survey doesn't capture any of that. It's not the whole picture. It's the one corner of the picture that's easy to look at.
[1] https://pmc.ncbi.nlm.nih.gov/articles/PMC3740159/ ; [2] https://pubmed.ncbi.nlm.nih.gov/7231176/ ; [3] https://www.researchgate.net/publication/11551964 ; [4] https://pmc.ncbi.nlm.nih.gov/articles/PMC3044819/ ; [5] https://www.oecd.org/en/publications/society-at-a-glance-202... ; [6] https://pmc.ncbi.nlm.nih.gov/articles/PMC12812862/; [7] https://www.nia.nih.gov/health/alzheimers-causes-and-risk-fa... ; [8] https://www.cdc.gov/birth-defects/living-with-down-syndrome/... ; [9] https://pmc.ncbi.nlm.nih.gov/articles/PMC8911183/ ; [10] https://journals.sagepub.com/doi/10.1177/10848223211027861
They have a significant reduced live span and are far away from the normal population. They also can't reproduce (at least woman, only with very high risk).
Most people don't want to be unique, they want to be a part of the rest of the herde.
Its objectivly better to not have down syndrom.
And before i get downvoted: My stand doesn't mean i look down on peole with down syndrom. These two viewpoints are not exclusive. The same for the decision to abort a fetus with down syndrom doesn't mean that someone decided this, would look down on people with down syndrom.
Sure, but given the choice to not have down syndrome, I'm sure they will choose it. Were they given the choice? Not as a hypothetical. But in front of their eyes.
A similar statistic applies to many disabilities. If you give people a few years of time, after they acquired a disability, studies show their happiness isn't substantially different from a person without a disability. Grief comes from lack of accessibility and society failing to support us. But not from the actual situation. I have to explain this every other week, to a non-disabled person that tries to tell me how bad my life must be. Its a well known phenomenon. And a total break of boundaries. Imagine someone walking up to a woman and tellign her they are sorry for her being born as a woman? Not imaginable. But happens with people with disabilities all the time.
If I told you I put a chemical into the water supply that gave people brown hair you’d probably think I am weird and stupid but not evil.
If I told you the chemical gave people down syndrome you’d probably think I am evil.
Whenever these topics come up there’s always people saying things like “but what if people like it?” And I can’t help but wonder, really? Are we really having this conversation? The answers are obvious so why pretend they’re not?
I don’t believe anybody actually thinks this way.
> 99% are happy
Unfortunately, that's not entirely accurate.
50-90% of babies with diagnosed Down Syndrome are aborted before having a chance to be born and enjoy their lives. In Iceland, that figure is 100%.
As of now, the overwhelming majority of future parents who learn that their baby is going to suffer from Downs decide to abort it. So 99 per cent of would-be Downs may not get to comment on their enjoyment of life at all.
IIRC there are countries and years without a single Down syndrome sufferer born alive. An effective treatment for the condition could change these stats.
You got downvoted because people fail to see from both sides. The people outside of course would compare and say this is the worse outcome, fix it no matter what, but once the person already have it, from their perspective, what do they think about it? Do they also compare, but maybe they cannot make that decision clearly, but it's also their choice so there is room to debate.
> It would be interesting to understand what people with down syndrome feel about this.
Would it?
> Would they all want what makes them unique turned off?
Having a disability doesn't make you unique, it makes you disabled. There is a difference.
> 99% of people with Down syndrome were happy with their lives; 97% liked who they are; 96% liked how they looked; 99% expressed love for their families; 97% liked their brothers and sisters; 86% felt they could make friends easily.
Survey their parents, who are almost certainly their full-time caregivers, if they are "happy their child has Down syndrome."