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CRISPR takes a bold leap toward silencing Down syndrome's extra chromosome

https://medicalxpress.com/news/2026-04-crispr-bold-silencing-syndrome-extra.html
18•amichail•1h ago

Comments

JimmyBuckets•1h ago
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.

ButlerianJihad•1h ago
> 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%.

iloveplants•43m ago
alright let's go survey those ones too
trollbridge•25m ago
The "No Response" category might end up being a bit over-sampled.
r_p4rk•43m ago
I don't see how this makes the figure any less accurate?
OkayPhysicist•55m ago
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.

refulgentis•40m ago
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

spockz•20m ago
I completely hear your point. We have a close neighbour with a kid with a mental disability which causes her to mentally stay forever 6 years old. She is a happy person but we do see the effects on the parents and sibling and how much care and love they spend. They do it willingly and lovingly, but it still takes a toll. Would they choose differently? I don’t know. But as a parent if I had the chance up front to cure/fix/prevent expression of Down syndrome, I would take it.
porridgeraisin•26m ago
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.
m3kw9•21m ago
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.
CooCooCaCha•17m ago
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.

pixl97•10m ago
>I don’t believe anybody actually thinks this way.

Oh, there are far too many people that do. I mostly call them the "Hell for you, heaven for me" bunch, the doublethink/cognitive dissonance in so many is very very strong.

https://joycearthur.com/abortion/the-only-moral-abortion-is-...

“The Only Moral Abortion is My Abortion” is a common example of this behavior.

almostjazz•4m ago
If you force something major and permanent on somebody without their consent for no good reason, of course it would be evil. It would be evil to force somebody gay to be straight and it would be evil to force somebody straight to be gay, that has nothing to do with the goodness or badness of being straight or gay. Hair dye is temporary.
pixel_popping•12m ago
99% doesn't make sense, not even 99% of people without Down syndrome are happy (far from it I believe).
almostjazz•9m ago
What exactly is logically impossible about people with down syndrome being happier on average than those without it?
pixel_popping•3m ago
It could be true because their surrounding/family... would take care better of them than the average person, that I might understand, but still, it's really a stretch.

can you really say you're happy with something when you don't know what life without it looks like? You adapt. You make peace with it. That's human nature. Doesn't mean it's the best option.

Scarblac•11m ago
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?

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