Scientists may have found a way to eliminate chromosome linked to Down syndrome
academic.oup.com
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I used to live near a Down syndrome center where a bunch of folks lived and I remember this one lady who was kitted out with Britney Spears everything, lunchbox, t-shirt, hat, and headphones. Everyday I passed by the bus stop she would be dancing her heart out to a Britney track waiting for the bus and it made my world a little brighter.
As someone who absolutely loves to "be weird", I often wish the world was so much friendlier to folks like this (other than in a token manner).
Being happy doesn’t mean you ok. They require extensive care throughout their lives
For example as a gay dude, people still hate gay guys (lesbians are far more accepted). But they're just much more quiet about it now, and even if they don't hate us we still "gross" many people out, which affects their decisions due to perception of us.
Perhaps the range of acceptable weirdness has broadened, I'm not sure, but it's discouraging to hear their stories of just how mean kids can be.
tolerance is a peace treaty, but there are a ton of gaps in how we implement it because our default socially and politically is more-so based in privilege than co-existance.
If you were part of the latter, you would instantly understand why we still have a lot of work to do.
And that applies for many definitions of "normal". A person outside the "norm", in whatever category, is accepted far less than you claim. Sometimes it may not be visible or even intended, but it's there.
On a serious note, if the world is a lot more accepting, it's mostly because the youngest generations are a lot more accepting, and the more bigoted among us (which tend to skew older) are slowly dying off.
And they would be right. And I say that as someone who’s hard anti-woke.
yes for sure. I make sure to teach that to my kids and model that behavior. Lot of my peers are doing that too. I like the 'differently abled' terminology and mindset so much better.
When i was growing up the prevailing mindset among parents was that their kids will trampled on if they teach them to show kindness. Now we want our kids to be kind.
I’m 41 and have noticed the exact opposite movement in my lifetime. Today, we celebrate the meanest people in society (we even elect them President). Kindness is considered a flaw and means you aren’t taking advantage of every opportunity to move yourself forward.
If I compare the rhetoric of Jimmy Carter and Donald Trump, it doesn’t tell me that we are more kind as a society.
The latest is that the Trump admin wants to institutionalize the homeless and "people with mental disabilities".
Edit: user smeej has cited a few papers on this matter.
And Facebook is already, with no ironic self-awareness, showing me ads for both.
Where do traits that aren't genetic come from then?
https://en.wikipedia.org/wiki/Epigenetic_theories_of_homosex...
Most of they bring to the world is random rage, unspeakable fluids, and unpleasant interactions.
But I guess driving past safari style is fine.
a) all who have learnt about the situation before birth and chose abortion,
b) all who gave the kid away to some institution.
A N == 1 case from my life. My classmate had a Down kid at 20 - very rare, as Down is not typical in young mothers. She seems to be happy, even though she sacrificed her dream of a bigger family for him; it was so challenging having a Down kid that she didn't have any other.
But the father absconded and wants nothing to have with his disabled son.
Whereas some children might get into a mood and be ok after an hour, he does not unless his environment is changed.
He will literally scream or moan non stop for 6-8 hours (yes you read that right, and it's no exaggeration). He would do this when in environments he doesn't recognise, so imagine an airplane, imagine a restaurant, imagine a trip out...
We can't do those things anymore because of the actual judgement we get from other people (oh and I could write a post on this alone).
Then, when we return him to the car to drive home, his behaviour instantly turns to a smile and blowing raspberries.
We also can't get respite, our parents are too old, friends don't feel right babysitting, council services won't yet see him as old enough or have no availability, so it leaves us hiring privately, which is expensive, difficult and low availability.
Of course this takes its toll on our mental health, his sibling and us.
So on one hand I'm pleased it can soon be stopped for others, but on the other it makes up my son's behaviour, who I absolutely love regardless of the impact he has on us without realising, because there are times when you will see the stereotypical love and happiness when it is unexpected.
But I would not say I have greater happiness.
Can you point to any that you have read?
The fact that you'd be crushed at a depth of (IDK, 2km or so?) underwater doesn't make "swimming" unhealthy.
My concern with eugenics is that it's a thing which various groups of extremely narrow-minded bigots push for to promote mutually exclusive ideals, ideals which often have much the same level of biological awareness as an untrained idiot picking up a scuba kit and trying to walk from London to New York along the sea floor.
If we go slowly and carefully, if these treatments are optional and not mandatory, we might be able to build a better world without such self-righteous bigots. But this is definitely a case where we want to be slow, spreading this over multiple generations if we can, because we don't know the limits of our own ignorance.
But I’m gay, and while there are pros and cons to it, I wouldn’t trade it for anything in the world. And I don’t think just because someone else doesn’t want to be me is a reasonable bar for eradication.
To be clear, I’m not saying the two are equivalent, just pointing out that you need a better argument than “you don’t want this for yourself or your children, right?”.
It's completely understandable to have an attachment to one's own identity, but at a certain point trying to impose that identity on one's children becomes ethically questionable. A good example is the deaf community - would it be appropriate for a deaf couple to withhold medical treatment from their child that would allow them to hear? I would argue no, but some people disagree.
Having Dawn syndrome is severe impairment.
Being gay isn't an impairment. At least nowadays in US. I'm not sure you would feel the same if you were gay in Chechnja ... where supposedly gays just don't exist, and when something like gay happens the family deals with him themselves (the rule there - either the family deals with their own member, or the society will deal with the whole family). Especially if it were about your children.
The way you can wildly change the answer to this by changing the age, gender and marital status of the subgroup of straight people you ask is a lot more interesting than the answer itself is.
“[A cochlear implant for my kid?] You think hearing people are better than deaf people?”
‘I’m saying it’s easier.’
“Would your life be easier if you were white?”
... Whether society is mature enough to recognize that in the presence of that treatment, Down's people will still be born and they have every bit the same dignity-of-human-life as the rest of us is a very important question.
Tiny nit, in the US it’s “Down syndrome”, not “Down’s”. Apparently we name conditions with a possessive if named for someone with it (“Lou Gehrig’s”) and without the possessive if named for, say, the person who first described the condition in a medical journal.
If Nazis hadn't practiced eugenics it wouldn't have been shuned as it is today.
There's nothing wrong with eugenics in itself, just with how it's applied.
Wow, that is certainly difficult to explain.
Now abortion has become a moral imperative in some cases...
But yes, I do actually think there is a moral imperative to abort fetuses with diseases that will extremely negatively impact the life of the person and of the people who will have to care for them.
That doesn't mean we shouldn't care for them if they happen to be born, not at all, but I don't really understand how it can be controversial otherwise.
wait.. what?
Especially much of Europe which didn't quite have the moral objections against abortion that the US does, save for a few countries who still have substantial observant Catholics such as Ireland and Poland.
Here's a story about Iceland https://www.abc.net.au/news/2024-05-01/iceland-prenatal-test...
I do have to wonder what goes on in the minds of these people. My sister-in-law has a child with Down's syndrome and the situation basically ruined her life. She can no longer work, so they now struggle on a single income, if her husband were to leave her she would be completely screwed. To what end is that in the continuance of ethics?
I'm not arguing whether you should or shouldn't agree with them, nor saying anything about in which cases. It's just one of the primary things going on in the minds of those people, and you said you wondered.
Also you are being very dismissive by hand-waving away lifestyle. Quality of life is a significant factor in medical decisions. Many people choose short high-qol lives over longer low-qol lives.
The question is who is responsible for them and what it means to those or society.
Let those ethicists take care of a Down-syndrome person one year, then ask them again.
About lifestyle and such.
Ethicize can everybody. The real questions are more down to earth. Pun not intended.
By the way, my partner and I are of different views and because of her I know there are very different types, some are totally self sufficient and work.
As always, truth is somewhere in between. Do not eradicate, let people choose. There will be people who terminate, others will not. Let those people pay a share who take the risk and then put their child to social care. But be human and society should help and pay a big ahsre too.
How much? I have no idea. We would need the exact numbers, other social projects, a good discussion forum, tests before people comment. I probably have no ida about Down syndrome and still, I am just being commenting.
I think generally a big misunderstanding that there is one solution and one way. We should always just find a middle way, listening to each other, learning, voting, discussing. Keeping freedom of choice and responsibility of own choices in balance.
Isn't it only just Vegans?
The way I think about it; 10-20% of known pregnancies (and a larger number of all pregnancies) end in miscarriage, the majority of which are due to genetic errors and chromosomal abnormalities that, unfortunately, mean the fetus wasn't viable to begin with.
While some genetic defects don't kill the baby in the womb, the resulting baby is not healthy and will never be self-sufficient. Terminating these pregnancies lets the couple try again and gives the chance for another, healthy baby to come into the world, and possibly more because they won't have the burden of a many-orders-of-magnitude more difficult and perpetually child to raise.
This is not inherent to Down's syndrome, this is because we live in a society that could easily support people but doesn't.
edit: I mean to imply here that the overton window is shifted, basically.
People with down syndrome are great people who live rich lives. But along with developmental disabilities they suffer from a great many health problems and have severely shortened life spans. Perhaps the future is such therapies will be able to initially focus on these secondary effects.
I don't think methods of preventing chromosomal anomalies are eugenics, since such anomalies are already not inheritable.
Aborting a fetus with trisomia so that the couple can try again for a healthy child is nothing like that.
There isn’t a set of magic words people use (eugenics, isms/phobias) where the person accused of said word must prove that’s not the case before he can continue. “It’s eugenics” isn’t a reason to shut someone down.
No, it isn’t. “I wish you didn’t exist because your existence inconveniences me,” is a step away from “I should be able to kill you because you inconvenience me.”
You will likely think that I am being hyperbolic (“We’re just talking about if it was a good idea for these people to exist, not saying we should be able to kill them now that they do exist.”), but I suspect that you would not feel the same way if it was your existence being discussed this way.
I can’t speak for the parent commenter of course, but this is by no means a universally accepted truth.
I've had smart pets. I've never had children. I sometimes envision smart pets as like an X-year old child with Y-year old trait, almost as a person with a disability. If a child can't achieve independence and a life of their own, why let all parties suffer through that ordeal?
That said, I'm still pro screening for Downs in fetuses. What I'm trying to say is that I'd do the screening for me as the parent. Not for the person to be born.
Their parents (usually the mother) will end up spending all of their time to care for the kid. Other kids in the family will either be neglected or will have to help care for their disabled sibling.
When they leave home, they usually move to care facilities were multiple employees care for them.
Caring for people with Down Syndrome is a huge burden both on the individual and on society. It's something we do because we believe that everyone has a right to a fulfilled life, and because humans are generally compassionate creatures.
But if we have the choice, 95% of us chose not to have a baby with down syndrome.
Based on the anecdotes here. 5 in support, 3 against as of now. I wasn't expecting such a spread, so I did a bit of research. The cognitive problems, though possibly quite severe are not so as frequently as I had assumed. Whereas the medical complications tend to be commonly nasty. As for independence there's a lot of advocacy material claiming so, but reading between the lines and in conjunction with reddit and quota testimony, I suspect very few qualify.
> And what makes you think they, or their families, see their existence as suffering?
I'm sorry, what? Those with Down's Syndrome are people, with all the emotions and experiences that entails. If they are supported, nurtured and loved then they'll lead correspondingly happy lives.
As for suffering... their families DON'T care for them. That's why I'm paid to do it for them. People avoid what causes them suffering, so the absence of voluntary caretakers is evidence enough.
We knew with (well beyond) reasonable certainty that our son would have Down syndrome and chose to continue the pregnancy. We’re not religious and not part of any pro-birth political cohort; it was absolutely an affirmative choice.
(I observe people struggling to care for elderly parents while also trying to be highly-successful rugged individuals and I'm struck by hoe, for want of a better phrase, anti-human that self-made goal is. Real people need help. In all stages of their lives. We have convinced ourselves that need is weakness).
I can say with absolute sincerity that if I happen to conceive a child with DS, I will feel like I won the genetic lottery. Not saying you do or should have the same values, but dismissing the experience of the families who do have these children in them because you have a different set of values that would make it undesirable for you isn't fair either.
Let me put it another way by making it less personal to tech: Hollywood celebrities, wildly successful people that basically everyone knows their names and faces, are still workers. Million dollar contracts BUT only if they play ball with the system and don't get themselves blacklisted for being too political or being too inconvenient saying no too many times to staring in soulless Disney slop, or whatever. They can retire early on that kind of money, get to a kind of stable non-participant status, sure, they can place pressure on their industry and on society to change to some degree, but they'll never call the shots because they don't write the checks.
Their compulsive erasure of female voices across the internet is just the same impulse of control.
Title: When They Warn of Rare Disorders, These Prenatal Tests Are Usually Wrong Authors: Sarah Kliff & Aatish Bhatia
https://web.archive.org/web/20250712195745/https://www.nytim...
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.
That baby did not have down syndrome and is now a happy seven year old.
Terminating on 1/100 without any further testing seems crazy to me. Of course, our scans and screening were all 'free' on the NHS, so there was no cost to getting extra data.
I think the doctor felt that early termination was a better result than later termination.
When he told me this story he was confused as to why they didn't start by finding out if the parents would keep the baby regardless. He saw it as a waste of resources as in their situation termination was never on the cards.
https://healthed.govt.nz/products/antenatal-screening-and-te...
I’m very pro-science but I also feel for the people with downs who are like - what? They’re going to end everyone like me in the future?
I think at a certain point you can’t consider this stuff rationally.
Yes, they can be beautiful people that bring light to others around them, but those others also don't typically get exposed to the behind the scenes struggles of the entire family to cope with this.
Some people are prepared to do this; I don't judge the ones that decide they're not. I would hate for someone to go into it not understanding what they're signing up for.
All lines are arbitrary.
For the record, I'm pro-choice. It's just kind of weird that people are OK with abortion but only in weird certain circumstances. I get timing--if a fetus is viable, why someone would think that's too late to make that choice. But not the motivation behind it
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.
Given that this is also true of universal health insurance and the US government also doesn't pay for that...
All that above is to say that I wonder if some folks in Down Syndrome might actually prefer their status quo abnormal development?
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?
Maybe you’re right and this situation was terrible for everyone. Is this arrangement required? Is it the best we can do?
I don’t think most people would choose to live a life with many common afflictions. I certainly wish my lower back didn’t hurt all the time. That doesn’t invalidate my existence, and neither does my son’s Down syndrome invalidate his.
I ask because segregation like that was considered standard of care decades ago, but has not been in decades now too, so if it was recent, it's not following current best practices, and if it was long ago, it's worth noting that this is no longer the standard of care, indeed because it wasn't helpful and people would not choose it.
If that is not a benefit then I'm not sure what is.
That's a benefit.
Cochlear implants are reversible. A genetic disease is not.
They permanently destroy hair cells of the inner ear during surgery to make direct electrical contact, so removing them won't restore your pre-implant level of hearing.
It's usually a moot point if your hearing's bad enough to be a candidate for implants, tho.
We should not let compassion for these people obstruct some basic facts. My only consideration would be the potential risks and side effects that are to be expected for any medical intervention. But if we were expecting a child that was diagnosed with Down Syndrome, I would not hesitate for a second to give this child the chance for a normal life. And us parents the chance for normal parenthood.
Please cite your sources and show your work.
My child with Down syndrome is a giant pain in my ass, I worry about him constantly, and there are days where I wonder “why me?”
The same is 100% true about my typically-developing daughter.
Down syndrome has nothing to do with parent outcomes. Society refusing to actually provide support is the issue here.
I’m pretty sure most scientists would consider being able to communicate effectively with your own species, “normal”. Regardless of what animal you are. Just like it’s normal to have 5 fingers as a human. But some humans have more or less. That’s just…life.
No need to be unnecessarily sensationalist. I do agree that using the term “normal” should give someone pause. But warning bells? Depends on context…like everything in life. :)
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.
It is a hard life for everyone involved.
I wanted to respond to multiple comments with the touching speech of Frank Stephen (a man affected by Down syndrome) before the US Congress in 2017, so I'm posting it to the top level instead.
It's a complex issue but I think listening to Stephen will add a valuable perspective.
https://m.youtube.com/watch?v=vtS91Jd5mac&pp=0gcJCfwAo7VqN5t...
Considering that scope, the people for whom this could be useful are those who have very few embryos, one or more of which have trisomy-21. With a young couple, they will have many embryos and preimplantation genetic testing will reveal trisomy-21 early enough that even if they have fertility issues they can just run more rounds of IVF.
With an older couple or one with severe fertility issues, they may only have one or two embryos to work with.
This is all science-fiction, though, since a technique like this will require a lot of work (both in development and in regulation) before it can go live.
There's no point; other trisomies won't go to term. (Sex chromosomes are an exception, but also don't make the child nonviable.)
Now factor in that the success rate of eggs turning into viable embryos that can be transferred back into the mother can be low. Even if you harvest say 10 eggs, a good catch, you may very well end up with just 1-2 viable embryos from those 10 eggs. And that's before considering trisomy as discussed here.
The final kicker is that harvesting takes time. You might well only be able to harvest a few times per year. And success rate drops quickly once you're past 38 or so.
(And that's of course assuming human trials were authorized. Probably not for this treatment in my lifetime, at least not in the US).
People are still looking for a genetic link to autism.
I can see how if we, as society, - gain such immense wealth that taking care of/ providing support to/ humans with DS becomes so easy - arrive to the conclusion that there is no downside in emotional health/wellbeing - change definition of what “living full/happy life” Then parents stop perceiving DS as a concern
A novel therapy that does not result in the termination of the pregnancy might satisfy the conservatives, but it does nothing to satisfy the disability advocates, who point out that these kinds of technologies fundamentally normalize the idea that they should never have been born the way that they are.
One can value/respect people with DS and strive to eliminate DS at the same time.
I have no moral problem with a therapeutic intervention that improves a life by treating a debilitating disorder with no cost of life.
I will have moral problems when those ideals are inevitably twisted and loosened over time to not just treat disorders, but pick attributes like intelligence, strength, skin color, attractiveness, etc.
We also would do good if we'd learn from books like 1984 or brave new world.
do you give the same worth to a human "life" at 10 weeks as you do at 9 months?
There are companies right now making bank on embryo selection based on genetics, the next step is modifying genes instead of rolling a crap shoot and hoping to get what they want.
Funnily enough, such companies are funded by and led by some HN subcultures' favorite people, I would know because I was recruited by one of them who went out of their way to not mention that their marketing material to parents says they intend to let parents pick embryos based on perceived intelligence based on genetics.
Tldr: there are monied parties that want this and they literally cite Gattaca as their inspiration
You have to be of the right genetic origin because of the source data, but the truth is it's very risky to do embryo editing. It's hard to tell which way things will land. For all we know, gametogenesis may arrive first. And if that happens, then selection will suffice.
Can you explain what this means? After thinking it over, the most plausible reading to me is that they think the results will not generalize to other origins than the ones they have data for?
This construct is a bit of a head-scratcher that takes away from the rest of your comment; "failed to mention" would've done the trick. As for Gattaca as a source of inspiration for future parents... yikes.
They emphasized certain genetic selections that sound good, but failed to mention that the leadership, investors, marketing and customers are actually really concerned with this one specific trait that sounds bad, that's selective omission.
Technically, 99% of Down's cases aren't hereditary (it's a spontaneous mitotic change), so you don't "improve the gene pool" by excluding it; as far as we know, basically anybody can have a kid with Down's syndrome if the mitotic dice come up snake eyes.
(But in the sense most people understand the term? Yes.)
Just because something is labeled "eugenics" doesn’t automatically make it bad or good—outcomes depend on how ideas are applied.
Historically, eugenics didn’t have genetic tools, so efforts focused on social policies, like promoting abortion or family planning, to influence who could reproduce.