This is very clever - the X chromosome has a mechanism to shut itself down (which makes sense; otherwise cells in women would have twice as many gene products from the X chromosome as cells from men).

The linked research report[1] uses that mechanism, Xist, to shutdown chromosome 21, the extra chromosome whose presence causes Down syndrome. In its present form, it would need to be optimized for each potential patient and is unlikely to be used as a treatment paradigm, but the biological approach is clever.

[1] https://www.pnas.org/doi/10.1073/pnas.2517953123

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 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."

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?

Individuals have very different abilities and needs. Some are able to drive and work independently while others require ongoing support.

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.

99% doesn't make sense, not even 99% of people without Down syndrome are happy (far from it I believe).

What exactly is logically impossible about people with down syndrome being happier on average than those without it?

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.

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.

> 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%.

I don't see how this makes the figure any less accurate?

alright let's go survey those ones too

The "No Response" category might end up being a bit over-sampled.

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.

>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.

I think this is a deeply flawed interpretation of the original commenter's post. They are suggesting that we think very carefully about imposing our standards of what constitutes a "good" person on the unborn. I don't see the problem, honestly.

If humanity had the ability to think very carefully then the world would be a much different place.

The number one rule of thinking about the unborn would be thinking about those who are living first.

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.

All of the arguments in this thread seem to be treating this research's outcome as deleting a person, and applying a corresponding moral judgement thereto. But it is not! I personally find that choosing to not have a child with Down Syndrome by engineering away the possibility in advance is no worse than choosing not to have a child at all, and better than aborting a viable but affected fetus, because no life is ended. I am not a murderer for choosing not to have any child at all because I feel that my genes should not be imposed on another generation, and I am not a Nazi for saying that if I had a child, I would take any available humane steps to ensure it received the best subset of genetic material from the set available to it. I would, in fact, argue that leaving the creation of a whole person who will have to experience life for 80 years to a series of genetic coin flips is morally reprehensible. Just because we've always done it that way doesn't make it desirable or humane. I welcome this development.

Kind of a strange example, because yeah I do think it’s evil to inflict your aesthetic preference on everyone’s bodies without consent.

The answers are not obvious. Arguably, putting anything into the water supply is seriously ethically questionable, whether it changes only your hair color or lowers your IQ or raises it, for that matter. People have the right to accept or deny medical treatment. For treatment which occurs before birth clearly they cannot do that, but if you were meditating upon whether to apply a procedure or not, and you had adults who could understand the question and to whom the procedure would have been applied, taking their opinions into consideration on the subject is entirely valid.

You think of a person with Downs' as less than a person without it, clearly. But why should your opinion matter? If we accept treating Downs' in utero, should we accept genetic treatments to lower criminality? What about independent thinking? What about other "inconvenient" personality traits. Like why not allow some "authority" to eliminate any "negative" trait they wish from the population?

Obviously these are extremes and your position that considering the question with respect to Downs' leads to a straightforward conclusion: on balance, it make sense, but I think we should approach any question about modifying people with serious consideration.

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

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.

Wow, thanks for taking the time to share all this data with such clear points. Much appreciated, especially the personal anecdote to make all this be less academic.

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.

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.

If there is no real downside to it, its not even a debate.

People with down syndrom have an avg iq from 50-60 which means that our society do not see them as independent human beings who are allowed to make all decisions themselves.

Also people with down syndrom do have reduced life expectency. In 1960 it was 10 now its at 60 (heart issues).