Interesting, I wonder what else this might lead too! Encouraging we might be getting somewhere.
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.
There’s another side to this. They place a large burden on the people taking care of them. Many parents also report that they regret conceiving children with Down syndrome.
Is it just me or do I feel like the society is way more accepting nowadays? I had to pretty much hide who I was during school due to fear of bullying/ not fitting in but most kids these days seem to be able to be themselves in many ways. I agree we can be friendlier though!
Probably in general, but not as much as you'd think.
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.
Unfortunately I think lesbians are only "far more accepted" in the sense that they turn on straight cunts rather than repulse them. The objectification and othering is the same.
Maybe, but we can't blame people for what they are/are not attracted to on either side of the fence, just their rational responses to "the other".
And I'm not sure lesbians are "far more accepted", perhaps as long as they fit a traditional heterosexual idea of beauty and femininity and associated behaviour.
Ah the "straight" was the adjective to qualify the noun, not the other way round! I.e. the same cunts who will get disgusted by two men kissing and try to harm them, will get turned on by seeing two women kissing and therefore it appears that the latter are more accepted. It's not kindness or open-mindedness, it's pure sleaze.
How much of that is a reflection of or reflected in societal acceptance vs just a figment of differing societal attitudes and standards toward women and men?
I noticed in Ireland (at least) the word "cunt" is used to describe an unpleasant/objectionable person in general (regardless of gender) whereas in the US it's a derogatory term for a woman.
> Unfortunately I think lesbians are only "far more accepted" in the sense that they turn on straight cunts rather than repulse them. The objectification and othering is the same.
The comment that started this thread wasn't about Down syndrome, it was about Down syndrome being more accepted because society is more accepting with lesbians being appreciated as the example.
I do think people - and especially kids - are generally nicer and more accepting than they were back in the 80s when I grew up. I wonder if this is related to the fairly dramatic drop in violent crime statistics we've been seeing over the last several decades?
It’s fun to imagine that an alternative reality where lead was never added to petrol. We’d be colonising neighbouring solar systems by now and living in a post-scarcity society.
I notice that some of the teens my kids are friends with are pretty weird in ways that would have invited extreme bullying when I was their age and they don't seem to have the same troubles. However, I still hear about some bullying cases. Maybe that's changing for the better too though, when I was their age we seemed to actively hide that we were bullied from adults and now adults are often (ineffectively) involved.
You’re right the world is a lot more accepting. No matter how much things improve and how positive the trajectory though, there will be someone online who tells us it’s not enough
It didn’t just happen. It happened through struggle and its continuation is not guaranteed. Look at all the reactionary movements springing up around the world. This is not an area I believe we can settle on “good enough”.
I think societies somewhat naturally wax and wane on most topics, probably because it seems we're simply unable to maintain a middle ground on anything. We always end up taking things to an extreme which, regardless of what that extreme may be, tends to lead to unpleasant scenarios which causes society to start bouncing back in the opposite direction only to repeat the cycle in the equal but opposite direction some time later.
You can see this playing out in real time with religion which went from societies that were highly religious to secular to militantly anti-religious, and now gen-z is suddenly some ~400% more religious than previous generations. [1] The most interesting thing is that that's also a global trend, probably owing to the relative global homogenization of societies in many ways.
Except that there's a difference between extremes. In political-left world, everybody has health care, access to housing and a liveable salary. In a political-right world, people are deported and killed, and the unlucky ones (i.e. the poor) live on the streets and can't afford to visit a doctor.
You haven't seen much of the world, have you. What you say is patently untrue.
Access to housing is nowhere in leftist countries (also what does that mean, failed social experiments in South America, France or someplace else? russia and China are highly capitalistic dictatorship, nothing left leaning there). Liveable salary guarantee - nope not true check how folks serving you at mcdonalds live. Healthcare ain't completely free anywhere, ie dental care is super expensive all across Europe. But this past point is closest to truth in some places.
I should have said "should have...", maybe this was not clear. I am not claiming tha there's a "perfect" country. Some countries come pretty close though, where you have affordable public transportation, affordable housing and affordable health care. For example and Germany and Switzerland (two countries where I have lived for long periods of time), nobody will die because they can't afford health care. Nobody will be homeless because they can't afford an apartment (yes, I know, there is also homelessness in these countries, but for a variety of other reasons).
Doe that mean it's perfect? No, of course not, there is always room for improvement.
The place he described exists only in the mind of avowed leftists, who refuse to accept that it will never be realized but are more than willing to force others to suffer in order to try yet again.
Most communist countries haven't been such a utopia as you describe.
>He told his fellow Russians in his entourage that if their people, who often must wait in line for most goods, saw the conditions of U.S. supermarkets, "there would be a revolution."
I am not talking about communism. Nobody on today's political left spectrum of is seriously talking about communism. This is about socialism, or social capitalism.
> On 2 January 1992, Yeltsin, acting as his own prime minister, began a major economic and administrative reform ordered the liberalization of foreign trade, prices, and currency. At the same time, Yeltsin followed a policy of "macroeconomic stabilization", a harsh austerity regime designed to control inflation. Under Yeltsin's stabilization programme, interest rates were raised to extremely high levels to tighten money and restrict credit. To bring state spending and revenues into balance, Yeltsin raised new taxes heavily, cut back sharply on government subsidies to industry and construction, and made steep cuts to state welfare spending.
> In early 1992, prices skyrocketed throughout Russia, and a deep credit crunch shut down many industries and brought about a protracted depression. The reforms devastated the living standards of much of the population, especially the groups dependent on Soviet-era state subsidies and welfare programs.[108] Through the 1990s, Russia's GDP fell by 50%, vast sectors of the economy were wiped out, inequality and unemployment grew dramatically, whilst incomes fell. Hyperinflation, caused by the Central Bank of Russia's loose monetary policy, wiped out many people's personal savings, and tens of millions of Russians were plunged into poverty.[109][110]
You know, for all their ills at least the historical communists meant well. Sure, some of them were pretty f-ing brutal but at least they tried to make their societies better, tried to make their countrymen richer and more prosperous.
The comparable people today telling us we have have to live under constant surveillance and be subjugated by all powerful governments and government intertwined institutions and organizations or otherwise losing all our rights and practical autonomy to various collective interests don't even do us the courtesy of pretending that the goal is to everything better and nicer. They just tell us that we'll all gaslight ourselves into liking the bugs or whatever and that despite everything being worse it's somehow better because stonks up and microplastics down, or whatever other metrics they also control.
Who is this imaginary "historical communist" you mentioned?
You're claiming Mao killing millions with idiotic policies (not to mention all the scapegoats he killed intentionally) was okay because he was "trying"?
Or are you talking about Stalin, Lenin, or Castro?
Who is telling you that you "have to live under constant surveillance" and so on?
You'd rather have someone run the country into the ground while lying to you about than intentions (which you're gullible enough to believe apparently, for better or worse) than not?
I have no idea what is happening in our schools these days, but obviously something is lacking.
You think you live under constant surveillance in the US? While there might be more surveillance than you like, claiming there is constant surveillance everywhere in the nation (or anywhere really) is ridiculous.
And this follows globally - fertility is one of the most interesting and critical issues of our time. It's going to change the future in ways most absolutely do not appreciate. On this topic most people see the world as inevitably becoming more secular because that's how society has trended during most of our lives, so it seems almost like a natural law. Yet even fertility alone means that society will almost certainly become substantially less secular over time.
This also has implications for the long-term population of Earth. The claim we'll reach a "max" population sometime this century is quite silly. It'll be a local max, not a global max. Because if even a single group maintains a positive fertility rate, that group will eventually drive the population to start increasing again (and basically take ownership of the gene pool while they're at it).
There really isn’t any way to know this for a fact. The future could hold technology that allows us to expand far beyond the current population, but it also could lead to setbacks that the population never recovers from. It is reasonable to guess it’s a local max.
I think this argument would make more sense if it were external constraints that were driving a declining population. But the population is only decreasing because the majority group of people stopped having children. So they will remove themselves from the gene pool, the minority will become the majority, and away we'll go again.
As an interesting factoid the Roman Empire, which for many people of the time would have had some analogs to 'the world', also had a fertility collapse prior to its end, that they tried to combat with quite strict laws, but ones which were ultimately ineffectual. Of course that was hardly the end of the story!
That story is trying to paint this as a revival of Christianity but looking at the Pew report and the data paints a different picture.
Conservative Muslim countries show a pattern of overwhelming male dominance in religious service attendance. At the same time, over half of the Muslims in the US are recent immigrants [1]. This raises the question to me: is the resurgence in religious service attendance among men driven primarily by a broad return to the Christian church? Or is it largely an effect of the growing Muslim population in western countries?
I'm not a huge fan of Axios, but chose to link to them for two reasons. (1) They leave their stories bullet pointed instead of feeding them into an LLM, or a human LLM, to add 5,000 words of fluff, and (2) they use extensive citations. Here [1], for instance, is a recent Pew study they linked to. All the studies have Christianity as the driver. And FWIW church itself is not a neutral term. Church => Christian, Mosque => Muslim, Synagogue => Jewish, etc. A neutral term would be 'attending religious services' or whatever.
The sex issue also seems to be just Axios' spin. By their own numbers it looks like church attendance is up 3x for women and 5x for men amongst Gen Z. Definitely a significant difference, but not really in line with their spin on the topic.
I do appreciate their citations but the spin is a bit much. I’m still very skeptical about the interpretation of a “return to religiosity” rather than religious immigrants continuing their religious observances in their new home countries.
To show a proper “return to religious observance” (any religion, not just Christianity) means showing a large number of people who attend religious services regularly but whose parents do not.
I agree that immigration is probably playing a role, perhaps even a significant one, in these numbers, but at the same time this is also expected even without immigration. Religious families are having more children which means that, over time, there would be an inflection such that a generation starts becoming significantly more religious than the one prior - even if it's 100% because the children of that generation were born to religious families. Bringing over large numbers of religious immigrants is just speed running this endgame.
Yes perhaps I should not have focused on immigrants when the overall question I want to ask is if this effect is driven by religious subgroups/subcultures which include both immigrants from religious countries as well as people from religious communities within the US.
My hypothesis is that we’re not seeing much of a “return to religious observance” from children of parents with low/no religiosity and that nearly all of the resurgence is driven by the aforementioned religious subgroups.
Generally that's because they're in the group (or have some sympathy for the group) that still isn't being accepted and may otherwise face obstacles that make it difficult to live a fulfilling life.
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.
As someone that lives as multiple minorities, both visible and not, this is very much untrue.
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.
The whole world (not just America) has polarising hateful propaganda aggressively pushed at them for... oh about 2-3 generations now.
There's a lot of people that have woken up to this and are loving and accepting, and sometimes it can feel like this is becoming the norm when you're able to surround yourself with that kind of person... but you're right. It isn't "the norm" it just normal enough for some lucky people.
Not the OP, but they're possibly referring to hatred of "others", a group far enough geographically or away from social acceptance, that people don't see any issues in the future with holding aggressive / intolerant views on them now.
I think a lot of social acceptance today is a mask. It's something people put on to virtue signal in the age of social media, and they expand their appearance of tolerance as wide as is currently socially acceptable to avoid anything being used against them in the future. You can see these masks slip occasionally.
My wife was originally born in Russia. She's lived outside the country for over 2 decades, is as little aligned with that country's politics as you can be, and is generally a very likeable charismatic person.
I've seen some incredibly "tolerant" and "accepting" people (of religious, ethnic, sexual, nationality aspects) who are unaware of her nationality spurt out the most vitriolic opinions of Russians (mostly when something relevant appears in the news), sometimes pretexted with "all" or "majority". In the environment these "tolerant" people live in, Russians are an acceptable group to hate en-masse. Many other nationalities also apply.
Many times she doesn't say anything, but when she has, you can see the mask going on in real-time. "Not all", "not you", "except you", backtracking and saving face.
Yes, and there will be others rolling their eyes and calling out all this "woke" acceptance.
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.
We live in a largely more accepting world that somehow exists in the same timeframe as "empathy is a sin". No matter how far we come as a society, there will always be people looking to "Make X Great Again" regardless of how great or not X ever was. Unfortunately humanity cannot rest on its laurels. No matter how much we advance as a civilization there will always be a conservative somewhere looking to pull up the ladder or cut off support. Ultimately looking for a way to game the system and deny benefits to others. It's quite amazing that we can look back on all the advances humanity has made in the last few centuries and can clearly see conservatives opposing all of it and somehow still rationalize conservatism as just some other process to achieve the same goals through other means. Yet at every major inflection point in our country conservatism has been the fucking enemy. They have been wrong. Every. Single. Time. When conservatives rebelled against the country and decided to start their own so they could maintain slavery, they were wrong. When conservatives fought against women's suffrage. They were wrong. When conservatives fought against civil rights. They were wrong. When conservatives fought against gay marriage. They were wrong. They have been wrong at literally every fucking important decision since their ideology was created during the French revolution. It's beyond time we stop pretending they have some insights worth listening to or some valuable lessons to convey and treat them as the enemies of humanity that they actually are.
Ironically, this is the least empathetic message in this thread.
You're also wrong: there were plenty of "anti-war protestors" during the Holocaust, who lost, and were wrong; plenty of radical feminists who were (and are) anti-trans; and the idea that the American Revolution was primarily about maintaining slavery has been debunked — for one thing, it was often led by Northeners who had already banned slavery. (The 1619 Project eventually conceded and issued corrections.) Environmentalist groups in the 70s doomed the planet by making it near-impossible to build nuclear energy in the US, and then later drove the US into spiraling inequality by making it near-impossible to build enough housing. Opposing eugenics was once a conservative opinion, whereas the "science" of eugenics was favored by academia — and most of the suffragettes! The largest anti-eugenics movement came from the Catholic Church.
Of course, new ideas that were better than old ideas usually came from people now termed "progressive" — the term is self-defining (if it wasn't "progress" no one would look back and call it "progressive.") But plenty of bad ideas have also come draped in the cloaks of people who term themselves progressive, and opposed by people who at the time were termed conservative: it's only in retrospect that we rewrite the people in the wrong as not-progressive, and consider the people then termed conservative as the true-progressives. Ultimately most people want good things for most people, and mainly argue — sometimes vociferously, and acrimoniously — about what the best way for that to happen is.
It seems to me there are two types of conservatism: concern about a change to society that does not have a clear evidential basis (which I'll call "small-c conservatism"), and a desire for other people to not have nice things (which I'll call "capital-C Conservatism").
If you read early radfems' complaints about trans women, you'll see concerns about men infiltrating the burgeoning movement to subvert or destroy its ability to effect much-needed substantial societal improvements for women. Nowadays, internet access and 10 minutes can disabuse you of this notion – but in the past, you'd have to have talked to an out, activist trans woman (who would often adhere to a different school of feminism to you, which if anything is evidence that she is dangerous to the Cause!) or had the right zines circulated to your doorstep (not really an option until the 90s, by which time it was generally understood that Transphobia Bad, the debate was about to what extent trans women's experiences were central to the Cause ("only tangentially" versus "in every respect"), and everyone knew you could pick up a Judith Butler book from your local library), to receive evidence to the contrary.
Likewise, the Catholic Church's conservative opposition to eugenics: they raised concerns about the human rights of those subject to eugenics practices, and later added secular arguments as justification. Contrast their opposition to trans people, which is… theologically confusing, to say the least: the existence of trans people "erases differences" (Galatians 3:28), distorts the image of God (Genesis 2:22), and (I seem to remember one bishop claiming) has already killed God… somehow. (Perhaps Pontius Pilate was secretly transgender? (This is me being silly.)) The justifications are all over the place, as is characteristic of post-hoc rationalisations of Conservative bigotry: replace the vague unevidenced claims about God with vague unevidenced claims about "nature", and the Catholic claims become the same rubbish as TERF claims. (Obligatory note: many Catholics do hold coherent views on this topic: I'm talking about the overarching organisation, not the people, or even all parts of the organisation.)
Small-c conservatism is a strategy, and isn't right by accident: it's an application of the same principle as Chesterton's Fence. Capital-C Conservatism is about denying resources and happiness to perceived enemies, while harming them as much as you can rationalise while still calling yourself a good person. (There are no capital-C Conservative policies that do not involve hurting people, prohibiting social mobility, or restricting what kinds of people are allowed to exist: many of them can't possibly qualify as small-c conservative policies, because they're only "conserving" an imagined past. Anti-immigrant sentiment in North America is one example: https://xkcd.com/84/.)
To undrape the cloak, we can look at how people talk about their ideas, and how they respond to criticism. (And remember not to focus on those calling themselves "conservative". Many "progressives" are actually capital-C Conservative, with a different – but no less harmful – idealised-state-of-nature: many modern-day eugenicists work in autism "charities", promoting "progressive" torture "therapies".) Unfortunately, this does not tell us which ideas are good, and which are bad: to find that out, you have to look at reality, not study rhetoric.
Most people may want good things for most people, but many people wilfully delude themselves about what "good things" means. Those, perhaps more so than the liars, are the dangerous ones.
> It seems to me there are two types of conservatism: concern about a change to society that does not have a clear evidential basis (which I'll call "small-c conservatism"), and a desire for other people to not have nice things (which I'll call "capital-C Conservatism").
False dichotomy [0]. Basically a bunch of sophistry to say "all conservatism is bad."
> the existence of trans people "erases differences" (Galatians 3:28),
You can't just quote the Bible without providing a translation, and I can find no translation with this wording. I would suggest that you refrain from commenting upon other cultures that you are ignorant of, as this is a form of cultural appropriation at best, and active bigotry at worst.
Same with your supposed "quotations" of Genesis 2.
> Capital-C Conservatism is about denying resources and happiness to perceived enemies,
Apply principle of charity [1].
> [...] while harming them as much as you can rationalise while still calling yourself a good person.
> Many "progressives" are actually capital-C Conservative, with a different – but no less harmful – idealised-state-of-nature: many modern-day eugenicists work in autism "charities", promoting "progressive" torture "therapies".)
On this we can agree - I don't actually see much difference between progressives and conservatives; they all fall prey to religious and superstitious thinking. All this self-aggrandizement about how diverse and inclusive one is, all the moralizing and ethical high-horsing, is really just a series of magic incantations the progressive chants to themselves to "psychologically manage the results of living in a materially deeply unequal society," [2] without actually needing to do anything about the material reality. Not so different from the way the sinner takes a dunk in a bathtub of water and is now "born again, free from sin," doesn't take the Lord's name in vain, uses gender-neutral pronouns, and wears a crucifix or a Pride flag - take your pick of religious idol.
> You can't just quote the Bible without providing a translation,
The quotation was from Pope Francis. The Bible reference (one of Saint Paul's letters) was me being facetious. Same with the Genesis reference: transphobic Catholics cite Genesis 1, but if you try to interpret Genesis 2 by the same logic, it says the opposite (and more definitively): the bigoted reading is eisegesis, and not even particularly good eisegesis.
For the record: I also think "my" reading of Genesis 2:22 is eisegesis. Very little of the Bible has to do with trans people specifically. Those passages of the Old Testament which do are best interpreted by an Orthodox rabbi, since they can't really be understood out of context (which hardly anyone else bothers with learning); and the few things Jesus is recorded as having said about trans people (that is, people who'd fall under the modern umbrella category "transgender") were positive; but trans people have little spiritual significance in the major Abrahamic religions (as compared to, say, Hinduism) and aren't major characters of any of the narratives, so there was little reason to say much about them (until the Talmud, which has rulings about a lot of uncommon situations, such as the appropriate treatment of many minority groups – but dates to after Christianity's split from Judaism and isn't really regarded by Christians).
This specific example wasn't my point. The Catholic Church is one of the few organisations in reissbaker's comment that's been around long enough to have taken a strong stance on two of the topics mentioned in the comment. (And I don't know enough about their take on slavery to neatly categorise it as small-c conservatism or capital-C Conservatism: from what little I know, it seems more like Realpolitik.)
> Apply principle of charity
That is me being charitable. There are harsher ways to apply "the purpose of a system is what it does", here.
I want to say yes, but there's a lot of regression happening right now, with right-wing rhetoric, manosphere influencers, and various regimes pushing the other way - the Trump admin firing people, removing symbols and renaming things that they consider "DEI" for example, or teenagers thinking women are property thanks to people like convicted sex trafficker Tate.
The latest is that the Trump admin wants to institutionalize the homeless and "people with mental disabilities".
> Is it just me or do I feel like the society is way more accepting nowadays?
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.
== 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.
This person has the support they need (institutional and otherwise) to be healthy and happy and they have something they can connect to and express themselves with. How is that a token manner?
That kind of joy, personality, and presence is somethin5g you can't quantify in a lab. Whatever this research leads to, I hope it's always guided by compassion
I run the risk of being downvoted on this issue, but there is a personality type associated with downs syndrome. My experience of living in a community of down syndrome young people certainly supported this, but there has also been quite a bit of research on the matter... search Google Scholar and you will see a ton. In brief: very social, positive minded and very creative. Importantly, this seemed not to be effected by puberty, unlike the autistic kids I have known. The year I spent in there company was a gift.
Edit: user smeej has cited a few papers on this matter.
Reminds me of that story about the casting of Patrick Stewart as Picard. Apparently Roddenberry originally had in mind a youthful, virogous figure much like William Shatner was for Kirk. So Stewart auditioned in a toupee to compensate for his baldness. An impressed Roddenberry realised that the toupee was pointless. Later when a reporter asked him why baldness hadn't been cured by the 24th Century, he said that society would be so advanced that no one would care anymore.
As long as you can pay for it. Not everybody can drive Ferrari. (Or rephrasing a USSR movie quote - A society without an upper/lower differentiator has no purpose)
It's complicated. The most compelling theory is that several genes might have a bit of an influence paired with the hormonal conditions in the womb. Here's an overview:
See, it's stories like this one that make me really question just how ethical it is to completely eliminate Down's from the gene pool. I understand it's the correct medical and scientific thing to do, it's just that it sometimes feels a little bit like eugenics for me.
Do you live or regularly interact with someone who has Down Syndrome, or have any kind of data that would support the idea that people with Down Syndrome are exceptionally violent?
What? Are you talking about real, live people with Down Syndrome? Surveys have consistently shown that they and those who live with them (which is no safari) are happier than everyone else. That wouldn't make much sense if "most" of what they bring to the world is "unpleasant interactions."
Counterpoint.
My youngest son has DS. He's an absolute nightmare sometimes.
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.
I've got a 13 year old daughter with DS. We don't have 6 hours of screaming but she has definitely thrown her share of hissy fits. My personal favorite was driving into my son's snooty private boy's school while she was sitting in the back without a shirt on (She was 12 at the time).
Or the time she decided to sit down in the middle of a busy street while we were trying to cross it and we ended up dragging her across the road skinning her feet and almost getting hit by a truck.
Usually she is happy and has tons of personality but it really does make things harder at times.
I should probably add my that my usual comment when anyone asks is that having a kid with DS sucks but not as badly as a lot of other disabilities.
> A valid and reliable survey instrument was mailed to 4,924 households on the mailing lists of six
non-profit Down syndrome organizations.
Definitely no sampling bias here... And given that the vast majority of people who do prenatal screening decide not to have a child with Down Syndrome, I don't think the people who choose to have a Down Syndrome child are really representative of prospective parents as a whole.
The revealed preference is clear, particularly in places like Iceland where prenatal screening is ubiquitous. They have effectively eradicated Down Syndrome going forward.
The perspective in question is about what it's like to raise a child with Down Syndrome.
Why on EARTH would the opinions of people who were so scared of the experience that they never tried it at all even for a minute be relevant to that perspective?
There must be some selection effect at work. "Those who live with them" are the ones who have chosen to live with them, which excludes:
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.
Of course there is, but when the perspective being asked is, "What's it like to raise a child with DS?" the only people who validly have an opinion are parents of kids with DS.
A different N==1, a friend and coworker of mine had a son with DS at 23. He's now the oldest of six children. They're doing great, and he's a terrific big brother.
I think the studies matter because N needs to equal more than 1 to get a sense of how it goes for the people who do it.
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.
If you marry someone to whom you’re attracted, check she’s mentally stable, reasonably healthy, aka reproductively fit, then you’re engaging in eugenics. Eradicating downs is eugenic. It’s also a good thing.
Wait what's wrong with voluntary eugenics? Perhaps the fact that something both "feels like eugenics" and is understood as the "correct medical and scientific thing to do" should cause one to reassess any unexamined, knee-jerk, blanket revulsion to the concept of eugenics that one may have.
That is not a simple test. Ask any straight person if they’d want to turn gay, the vast majority would say no. My guess is they’d say no if you asked the same question about their children.
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?”.
Would you want your children to be gay? As a straight person, given the choice I would want my children to be straight, so they could have biological children with their partner and a dating pool of ~48% of the population rather than ~2%. Those are pretty clear objective advantages, even putting aside the issue of societal acceptance.
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.
>That is not a simple test. Ask any straight person if they’d want to turn gay, the vast majority would say no. My guess is they’d say no if you asked the same question about their 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.
>But I’m gay, and while there are pros and cons to it, I wouldn’t trade it for anything in the world.
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.
>I’m just saying it’s not a good argument as it does not hold for other cases.
No. It does hold for other cases where severe impairment is present.
>My comment makes it clear I’m not comparing the two
exactly. Because your case doesn't contain severe impairment. When such an impairment is added - like say making you a father of a gay child in Chechnja where you have to commit a "honor killing" of that child to save the rest of your family - the cases become much more comparable. I'm pretty sure that in Chechnja you'd choose DNA edit to remove gay gene from your child if you're given that choice.
FWIW, since Down's is caused by (we're pretty sure) mitotic error, it can't be completely eliminated from the gene pool. 99% of cases did not occur on hereditary lines. With or without the existence of the treatment, Down's cases would continue to surface. So it's in the category of "treatments parents could choose to apply to their offspring," and generally parents get pretty broad leeway there in choice of the kind of offspring they're aiming for (starting with dating the guy with pretty eyes or the girl with the cute hair thing).
... 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.
As the parent of a child with Down syndrome, I really appreciate the way you and the parent comment approached this topic. Thank you.
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.
I had to look both of those up, and you’re right. The rule is inconsistently applied for sure. This got me curious about where the so-called rule came from. Wikipedia says:
> Auto-eponyms may use either the possessive or non-possessive form, with the preference to use the non-possessive form for a disease named for a physician or health care professional who first described it and the possessive form in cases of a disease named for a patient (commonly, but not always, the first patient) in whom the particular disease was identified.
This is sourced by a link to the American Association of Medical Transcriptionists, which is not a body I’d heard of but I guess have some skin in the game when it comes to the intersection of medicine and grammar. https://www.mtstars.com/word-For-eponyms-AAMT-advocates-drop...
“Performative” feels a bit judgmental, given that America/UK differences in orthography are common. But yeah, y’all spell it differently than we do. I think you might also capitalize the “s” in syndrome?
The social effects at scale are what bothers me. Just wait a century until employers put "no genetic defects" in their job applications. Or parents who decide to have old fashioned non-designer babies have trouble getting their kids insured. Or homophobia will become normalized again because "they should have fixed it in the womb". Is this a sufficient reason to not prevent genetic defects? Who can say.
The article is literally about removing the extra chromosome and not aborting the fetuses...
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.
It was well on its way to being eliminated in much of the First World through screening during pregnancy at around 2-3 months. Alot of mothers were electing to terminate the pregnancy and perhaps try again.
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.
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?
Many ethicists value the continuation of someone's--anyone's--(literal) life over the continuation of anyone else's lifestyle.
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.
Down screening is done at like 16 weeks. At 16 weeks that's hardly a life.
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.
>Biologists from 1,058 academic institutions around the world assessed survey items on when a human's life begins and, overall, 96% (5337 out of 5577) affirmed the fertilization view.
It’s alive as a zygote, so without even looking at the paper I don’t disagree. The person you responded to said “hardly a life” though, so I don’t think they literally mean is it a cell that’s alive.
Yes, but none of those are of the human species. A Hunan zygote is a unique living human organism, and I think history has shown us we must at least be very, very careful when we start arguing that some unique living human organisms are different enough from the unique living human organisms that matter that it should be morally acceptable to kill them.
Maybe this really is different from all the things about which we've later lamented, "Never again!" but we certainly ought not consider that criterion easily satisfied.
> unique living human organisms are different enough from the unique living human organisms that matter that it should be morally acceptable to kill them
I think what we should care about isn’t human life, but human consciousness. A person in a vegetative state doesn’t suffer when you pull the plug. The difference matters and is unmistakable between large organisms which have gone through a long process of development and tiny ones which have not; we should reasonably presume that only one of the two is conscious given no further evidence.
The likely response is the potential argument, and I don’t care about that. I care about human suffering.
“Never again” has been said in a completely different context: fully developed humans killing other developed humans systematically on a huge scale across years.
Don’t confuse ethnic cleanings and genocide with fully voluntary abortions, as sad as they may be.
I have a different opinion than yours. So what if that's some, very narrow definition of life? If I develop a tumor is it also a life? It certainly behaves so.
World is full of human life. West (and not only) manufactures failed wars that killed millions of civilians without a blink of an eye (Vietnam, Iraqs, Afghanistan just to name a few) and sends its own people to death. Where are those life-at-all-costs defenders?
Such people are the last to force their own viewpoints on protecting life unto literally everybody else. Yet they feel the most righteous due to whatever fucked up morals they have to spread them and attack everybody who dares to think differently.
Another story - very similar people (to the point of calling them often the same) have huge mental barriers unplugging their relatives from life support, in situations when there is 0 chance for any sort of recovery and brain is heavily damaged. Wife is a doctor and most of them are religious freaks, ie italian where we live (nothing against you guys, apart from this). They let their closest people suffer horribly (within the limits of their state) for months or even years, put a massive financial burden on whole society just because they don't feel like signing papers for unplugging already dead person, its just some parts of their body is sort of kept alive. Absolutely deplorable weak 'humans', I have no nice word for those. Suffice to say wife saw her share of such folks during her years in hospitals and it was one of the reasons she moved to private sphere.
Ehh, if you actually look up what a 16 week fetus looks like and is capable of you wouldn’t say that. It has eyes, ears, hands that open and close. Basically an avocado-sized baby.
I love animals, I love people, I love dancing Down-syndrome people.
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.
I've heard this expressed as existence versus life. Nobody owes it to to give up their life for the life of another, let alone if all that can be hoped for is the mere existence of another.
I understand where they're coming from, but I believe it comes from a place of local and specific concern (the child with Down's syndrome) and not the wider impact.
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.
It is a sound pragmatic logic (ignoring few corner cases), but people deciding things in such hard situation often don't decide purely on logic, if at all.
Until people like you figure that out, you're going to continue to be sorely disappointed with your political progress, because your "perspective" is not remotely logical.
Correcting what is essentially a developmental defect (albeit a defect that occurs in the germ cells rather than in the womb) isn't eugenics. It's not caused by any genes carried by the parents, it's caused by a failure in the development process, specifically meiosis. Would preventing fetal alcohol syndrome be eugenics? It's caused by changes in gene expression from alcohol exposure after all.
Are you suggesting that by aborting a fetus with Down Syndrome, the fetus is then cured of Down Syndrome? You’re not really correcting the developmental defect insomuch as eliminating the fetus that had the defect.
The context here is that there's evidence crispr CAS-9 can be used to repair damage to the genome by specifically targeting and deleting the extra third chromosome inside a living cell. I don't know why you'd assume I'm talking about abortion.
people should stop accepting that all forms of eugenics is "bad" - it's become so morally loaded that people like you are afraid to bite the bullet. We should be ok with having discussions about whether avoiding bringing children into the world with greatly reduced quality of life (or even pain-filled existences) is something we should be doing even though it's "eugenics"
I actually think it's reasonable to accept terms as they are if their definition has a long history. If eugenics means a system of forced sterilization intended to unfairly prevent certain people from having kids, (and it has for over half a century) that's fine. I can come up with another term to refer to practices such as embryo screening and we can all agree that eugenics was a very bad thing and would be bad if we tried to bring it back in the future. What I object to is then using a very loaded term outside of that original context to smear people that are making very hard choices, like parents trying to conceive a healthy child
If you want to call it an error, or simply a change, I'm happy to make the argument on those terms. Changes in the development process that leave a child disabled for life, but which can be prevented, such as FAS through alcohol abstinence, spina bifida through folic acid intake, and (if this research can be translated into a treatment) Down Syndrome through the targeted removal of the superfluous chromosome, should be prevented. And don't tell me kids with these conditions aren't disabled, because that dog won't hunt.
None of your arguments fly. Try to think like an programmer--kick the corner case of the arguments. I'm not suggesting anything other than pointing out that most arguments on here have been well trodden by ethicists and even they have no consensus. My personal belief about the specific issue is not even relevant. My objection is the low quality of argument (by several commenters) demonstrating a kind of prejudiced take, I find that the most offensive.
Here you moved from defect to disabled. I don't have to personally say that a group are/aren't disabled, to yet again point out your argument rests on an assumed definition otherwise yet another form of word loading. This is a really basic critical thinking skills example independent of the topic.
Stating something is sophistry is not tone policing. Pointless to explain this to those who lack critical thinking skills in the first place. Rather, it is you who are doing the policing from a self-assured conservativism so common to the HN crowd, it is time someone pointed this out. There's no good faith engagement under such a context.
There's a huge range of chromosomal anomalies. You don't see the vast majority of them because the pregnancy self terminates. It's something the human body is already doing.
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.
It's not eugenics, because Down syndrome is not inherited. There is no Down's genes to eliminate. Terminating down syndrome babies doesn't reduce the rate of Down syndrom in the next generation, and nobody is doing it for that goal.
Down syndrome can totally be inherited. If a mother has Down syndrome, the risk of passing the genetic condition onto their future children is 35% to 50%.
It's no less arbitrary than deciding that gypsies, who engage in petty crime and mistreat their children, forcing them to become beggars and thieves themselves, should not reproduce. If anything, Down kids probably bring more good to society than gypsy kids. And forced sterilization is arguably more ethical than forced abortion.
Same things goes for alcoholics and drug users.
Privately, most people agree with this position. The idea that eugenics is inherently bad is very unsound and doesn't withstand scrutiny.
Can't agree here. Regarding gypsies it boils down to the culture and rates of stunting, as evidenced by families who broke off the former and prevented the latter.
The way people with trisomia function in society is also a product of our nurturing culture. It's only recently, when such people started living longer lives thanks to advances in medical science, that their intellectual development gained more attention and it was revealed that they can actually be more independent than commonly believed.
That being said it all requires a huge amount of effort and if a person with trisomia has siblings, they're very likely to be deprived of attention. Additionally, if they're a first child, they're the only one due to this. That is what makes it a net negative.
Dating apps and services with a beauty/salary standard and long prison sentences for the worst criminals are also a form of eugenics. Many kinds of societal and political changes have a eugenic or dysgenic effect on the population, and I'd prefer to live in a society that has more eugenic policies.
People have an aversion to the word "eugenics" because it's often connected to atrocity propaganda from World War II.
I'm not suggesting that every country should have genetic purity tests and policies on the level of Israel, just that we should understand that policies affect what kinds of people are more likely to be produced.
The policy forced sterilization of indigenous people that went on from the postwar period up until the start of the 21st century is an excellent example.
When you consider with which woman to conceive children, consciously or unconsciously, you are engaging in eugenics. It’s fine. Forced sterilizations aren’t but we’re not talking about those.
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.
I don't disagree, but this doesn't change general opinion on the topic. People don't like discussing the idea that we should just delete anyone not up to standard.
That's a bit arbitrary though, isn't it? I mean, are newborn babies really people? The Romans didn't think so. I don't see the big philosophical difference. They can't earn money or pay taxes, and are 100% dependent on parental care and resources.
And how about sleeping people? I mean they're unaware of their surroundings. Are sleeping people real people? Sure, they'll inevitably wake up in a few hours, if nothing goes wrong. Same as how a fetus will inevitably develop into an adult and be fully conscious, if nothing goes wrong.
> Same as how a fetus will inevitably develop into an adult and be fully conscious, if nothing goes wrong.
Unless it dies in pain and suffering hours, days, months or a few years after birth due to a defect that we already know can never be cured or fixed by other means. Somehow societies that are least interested or capable in providing any aid to these traumatized families revel the most in their suffering.
Yes, that is a legitimate argument to make in a cruel, uncaring (most of the time) world. Lots of regretful parents out there who would take it back if they could. All life is temporary. Quality of life for all involved is a material consideration.
> Yes, that is a legitimate argument to make in a cruel, uncaring (most of the time) world.
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 do feel the same way of my existence being discussed this way. Would anything be different had I not existed? No, besides my brief life experience and interactions I’ve had with other humans not occurring. I wouldn’t have even known I never existed. Is that good or bad? Right or wrong? No, it just is.
Yes, very similar to how in the decades after abortion was legalized nationally in the US, it gradually northern to our current state where it is legal to kill your own children any time before they turn 18.
Oh wait, no, that didn't happen, because in both your and my case it turns out humans are able to distinguish between life that is and life that might be. The "step" you mentioned is only a small one in a philosophical sense, enormous otherwise to the point of not being a concern.
This is a great example because it strengthens the original one I was making; that despite pearl-clutching about what something "could allow", the actual bad thing that they're concerned about never happens. It's just a distraction tactic.
Plenty of states, like Alaska and Oregon, already allow abortion right up to the moment of birth. They don't happen, ever, zero times, except in cases where somebody is going to die otherwise.
The handwringing over "omg they're killing children" actually just kills both children and mothers by making lifesaving procedures illegal. People don't carry unwanted babies to term unless forced to do so.
Thus making it illegal to abort a full-term baby does nothing but score political points, at the expense of the deaths of some mothers who desperately wanted a child and then had some complications.
what is your opinion of the state assisting people to survive when their caregivers die? and what of thr caregivers who cannot work, or cannot afford care?
Primary care duties and costs should remain with caregivers except in cases of neglect or deprivation. Additional healthcare burdens (e.g. development psychologists, medication, etc.) should be covered by the state. When caregivers die, the subject is assigned a social worker to ensure his wellbeing. If no other caregiver can be found, he becomes a ward of the state.
Socializing the costs this way has its own ethical problems, especially where the parents continue to reproduce after learning they are carriers; I’ve simply concluded that the costs of care are completely negligible when you contrast them with the loss of human dignity that results from valuing an individual human on the basis of economic cost or contribution.
Yes, I do think you’re being hyperbolic. We’re waging a life that doesn’t exist yet against two parents and possible a healthy child that could be.
Accommodating for a human that exists, if suffering, is clearly a moral obligation. Doing so when it’s not a human but a husk still is not, and deciding in favour of the very human parents—who also have a right to happiness—is definitely ethically valid.
In a related discussion, someone argued that keeping up industrial farming is just, because if we stopped doing so all the cattle that wouldn’t been born would be worse off for never being alive, even if their existence was suffering, because suffering is better than not being at all. I firmly believe this is just wrong. Before a being gains consciousness, it’s not a being and doesn’t experience, hence by avoiding their conception we also avoid unnecessary suffering.
> In a related discussion, someone argued that keeping up industrial farming is just, because if we stopped doing so all the cattle that wouldn’t been born would be worse off for never being alive, even if their existence was suffering, because suffering is better than not being at all. I firmly believe this is just wrong. Before a being gains consciousness, it’s not a being and doesn’t experience, hence by avoiding their conception we also avoid unnecessary suffering.
You bring up an interesting argument, but I think there is some nuance here. I am not arguing that we have an obligation to propagate human life for the sake of propagating human life; I just think there is a risk of devaluing existing human life by claiming it ought not to have existed in the first place.
There are limitations here. e.g. if one is offended at the claim that Down Syndrome is something to be cured, it may be that one is placing too much emphasis on identifying the expression of an individual’s genes with the individual himself (so e.g. eliminating the extra chromosome is not analogous to eliminating the person himself). We wouldn’t do this with a broken bone, but the solution to a broken bone is setting the bone, whereas the “solution” to Down Syndrome has historically been abortion.
So what if one doesn't exist yet and another could be? Then both are possibilities. Your sentences look superifically logical but they make no actual sense.
I'm not sure I get your point. Care to elaborate? In one case, we're talking about assured suffering. In the other, the absence of suffering. Both are hypothetical, but in one case, we know about the outcome. There's obviously a difference here.
When you saying something like "we are talking about assured suffering" it is so unrigorous I cannot even begin to reply. Maybe read some philosophical literature. Or just the 5 w's like in grade school. Who suffers? Why is suffering bad? Why this comparison and not other comparative demarfations? What about second-order social effects? Could that increase suffering in some way? Serious ethicists grapple with these questions because they cannot assume a premise of 20th century nuclear-family hypotheticals (your error) removed from the societal context. And so on.
Why is that bad? When the topic is abortion, not being born is considered a good thing for the child, whose life prospects aren't so good on account of the economic conditions of his mother.
I do wonder if the elimination of all genotypes with Down's Syndrome would also result in a significant reduction in beneficial or benign genes.
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?
I'm a bit torn on this. We're all dependent on other people one way or another. Individuals with Downs are more dependent, but it's a spectrum and they can still have meaningful lives. Meanwhile healty "independent" individuals can live entirely tragic and arguably pointless lives devoid of love and filled with anger.
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.
Why do you think people with Down syndrome can’t “achieve independence and a life of their own”? And what makes you think they, or their families, see their existence as suffering?
Most people with Down Syndrome require a huge support network to achieve anything resembling "independence".
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.
> Why do you think people with Down syndrome can’t “achieve independence and a life of their own”?
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.
> 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.
Heartily agree! My question was a reaction to the last line in the parent comment:
> If a child can't achieve independence and a life of their own, why let all parties suffer through that ordeal?
I’m sorry that I didn’t make that as clear as I could have.
* * *
I’ve seen the negativity on Reddit and, now, here. Some of that is based on historical reality: the standards for medical care and early intervention have dramatically improved outcomes for people with DS even just in my lifetime. It turns out that if you don’t believe a child is capable of, say, reading, then you don’t bother teaching them to read. This becomes a self-fulfilling diagnosis. And not too long ago, many kids with DS had inner ear damage from undetected ear infections, leading to hearing loss and difficulty communicating. As we learn more about what’s possible and what needs monitoring in kids with DS, long-term outcomes get better and better.
This recent (~last 20-40 years) improvement means there’s still a visible cohort of people who didn’t receive that level of care and probably are less independent. But I’d also suggest that there’s sample bias in anecdotes on Reddit. Like with product reviews: the vast majority in the middle don’t bother to post, and negative experiences get more emotional traction than positive ones.
The range of associated medical conditions is long and scary. But no individual gets all, or even many, of those conditions. And a lot of the scariest/most complicated stuff is correctable early post-natal (heart surgeries are common) or end of life (early appearance of dementia is unfortunately still the likely outcome for most people with DS). Medicine continues to make progress, and I think outcomes will continue to dramatically improve.
You may not agree with my original point. Raising someone with Down's Syndrome is a high risk venture requiring significant capital (physical therapy, speech therapy, medical interventions and surgeries), a large support network (boots on the ground), and an endowment for continuing care once the original parent is no longer capable. Most people cannot afford to provide this, in which case the experience becomes an ordeal for everyone involved, parent and child. If a parent decides to proceed regardless and forewarned then they are possibly being emotionally selfish and a perhaps would be better suited with a pet rather than a child.
The government taxes you to pay me to assist these people.
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.
Those sound like capitalism problems, not medical ones, to be probably too honest (HN doesn't generally vibe with class consciousness because so many tech bros sell out or dream of selling out one day, but). Society can afford to have support systems for people with disabilities and their supportive family, as evidenced by the fact that it is currently doing so indirectly (by paying enough for the husband's labor that he can make finances work for the three of them). The fact that the husband in your scenario bears all of that for everyone else (and it creates an unhealthy dependency in their relationship) because we only value the under classes for their contribution of labor is the problem, and is solvable.
Forget the economic aspect of it, what about the emotional and mental cost something like Downs Syndrome imparts, for both parents? I can't imagine any parent hoping they will have a child that will be utterly dependent on them for their entire lives. It's not at all to say they do not love their children as they are, but nobody seeks to become a parent hoping their child will have severe developmental disabilities. While some may choose not to terminate the pregnancy, I think most parents would think twice before conceiving if they knew with reasonable certainty before the fact.
Why do you think that people with Down syndrome are “utterly dependent on [their parents] for their entire lives”? All children come with a severe “emotional and mental cost”, have you seen the world today??
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.
Because I grew up across the street from a forty-year-old woman with it. She will be dependent on her parents for the rest of her life. Still lives there. They make the best of it, but frankly, their lives pretty much suck (though she seems very happy with hers). They are no longer people but first and foremost caregivers. All parents have a stage of that but it’s temporary.
I’d imagine some downs patients have more or less functionality and independence, but seems pretty much the whole distribution is just too low for them to be independent.
If y’all are happy, it’s not really my place to comment on that. But this is one of the things that makes me nervous about having kids in future.
The issue isn’t that like all kids they come with emotional complications and caregiving. The issue is I saw these neighbors spend literally two decades trapped in Groundhog Day. They never progressed past it. Well into retirement and they were stuck in this. I’m not sure if they’ve passed now or where she is, but if they’re still alive, I’d guess they’re still in Groundhog Day. Same thing forever.
Years ago, my uncle worked in a home with a group of people with these sorts of conditions. Many were downs and needed help but families would or couldn’t provide it. It’s not just needing more attention, you have to change the way you live. Like one day, two other guys were taking them on a trip somewhere. On the way back they stop for gas, one guys filling up, the other runs in and grabs a slurpee. One of the downs guys says he wants a slurpee (he’s not supposed to have them for whatever reason.) no, can’t have that. But he wants a slurpee. Repeat ad infinitum. Winds up they’re a block away driving and this guy tries to jump out of the car to run back and get a slurpee. Uncle explained to slurpee guy later you literally can’t get anything without giving it to everyone. It’s like kindergarten logic. You have to live that way. Every day, forever.
I have another reply in this tree talking about outcomes and independence being much worse not even all that long ago. I won’t repeat it all here but it squares with what you observed in an older neighbor growing up.
Also: did they tell you they were miserable or felt stuck in Groundhog Day? If not, then it’s not a safe assumption. AFAIK many caretakers and family members report satisfaction with their lives despite the added complications. (Maybe your neighbors really were miserable, and if so, just know it’s not the norm anymore.)
The early genetic testing for Down syndrome is pretty accurate now. If it’s still a major worry for you about having kids, get the testing done early enough to terminate. I strongly hope that no one terminates out of ignorance about the realities - both positive and negative - of Down syndrome, but have no problem at all with informed choices.
People with Down syndrome aren’t “downs” or “downs patients”, though. It’s easy to dismiss this as language policing or, as another thread hinted at, performative. But the words we use and how we view the world are part of a feedback loop on each other. Synecdoche-izing people as merely a medical diagnosis colors whether society treats them as full members or not. And unlike, say, the Deaf or autism communities, it’s not currently a subculture or something that many people with Down syndrome identify as.
As an internet stranger, I’m asking folks to consider using “person with DS” instead of “DS patient/person/etc”.
I wonder how familiar you are with the reality of a life with DS today. Certainly some children with DS are dependent their entire lives, but others marry, have jobs, support themselves, teach others, etc. And on the whole, both individuals with DS and their family members report higher levels of happiness and satisfaction with their lives than others.
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.
In a better-constructed society, that child isn't dependent upon them alone their entire lives. "It takes a village" isn't just about things like education.
(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).
HN doesn't generally vibe with class consciousness because their high income makes them far more aligned with the "capitalist class" just like how a small business owner is much more aligned with the worker class despite being workers and business owners respectively, since it turns out that people do not value their theoretical "class" since it has no relevance to their life.
No. They want to believe that, but the reality is that even in this little bubble (with a median income multiple times that of general population's median), anyone that works for a living is far more likely to experience homelessness than they are to join economic elites. Sure, you're able to be comfortable because unlike most of the economy you are compensated well, but you should still have worker solidarity (and humility).
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.
On one hand, parents are making personal choices based on the information available to them... on the other, when nearly an entire population starts selecting against a certain condition, it starts to feel less like individual choice and more like a societal value judgment.
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.
My friends baby tested positive for down syndrome in one of the early screenings. They suggested termination. When my friend asked what the chances were they said on that test they had a 1 in 100 chance of down syndrome.
That baby did not have down syndrome and is now a happy seven year old.
We were given 1 in 21 from the nuchal transparency on the 12 week scan, then we did CVS testing to find out for sure.
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.
What is your point, that variance exists? I'm not sure I'd play Russian roulette even with a 100 chamber cylinder. 99 people might come away with an anecdote though.
I agree on the surface. But where do we draw the line of choosing what we think (in our very limited human understanding of future events) is better for a child? Soon it’s GATTACA. As an extreme counter example consider if you could choose the race of a child. Or their melatonin levels. You might think one is “easier” for the child or even “better” for a happy life or something, but then at what point do you have that “right”?
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?
Honestly 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.
I have a cousin with DS. You have to be committed and have the means to raise a child with extreme needs. Many of them will live with their parents their entire lives and will not develop cognitively beyond their tweens (hence the Britney Spears anecdote above). The ones that do move out tend to have to go to a place that specializes in assisting them. They can also have pretty extreme health issues.
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.
I think this point would be better made without using the word “extreme” so much. All children bring new challenges; kids with DS often bring more; my child with DS has never, ever been an “extreme” challenge (just like most of the other families with kids with DS we know). There are definitely outliers where the “extreme” applies, but it’s not a helpful way of thinking about DS in general.
From this[1] list of associated complications one can read:
People with Down syndrome are much more likely to die from untreated and unmonitored infections than other people.
Children with Down syndrome are much more likely than other children to develop leukemia
Children with Down syndrome are more likely to have epilepsy [...] Almost half of people with Down syndrome who are older than age 50 have epilepsy.
And from this paper[2]:
Clinical research and longitudinal studies consistently estimate the lifetime risk of dementia in people with Down syndrome to be over 90%. Dementia is rare before the age of 40 years, but its incidence and prevalence exponentially increase thereafter, reaching 88–100% in persons with Down syndrome older than 65 years. [...] In a longitudinal study of adults with Down syndrome, dementia was the proximate cause of death in 70% of cases.
Saying they can have extreme health issues does not seem excessive given the above IMHO.
It's interesting about the leukemia one. They're also more likely to survive it than children without Down Syndrome and less likely to get a second cancer.
Aside from that, it is actually hard to paint an accurate picture of today with historical data for people with Down Syndrome as the childhood Trisomy 21 strategies have improved and been implemented in the past 20-30 years. 60 years ago kids with Trisomy 21 were moved into institutions. Kids 30 years ago got some basic treatments to keep them alive. Now kids get all kinds of screenings for hearing, vision, thyroid, heart conditions before problems develop. Turns out it's very difficult to grow, learn and thrive when your thyroid doesn't work, or your cardiovascular system wasn't circulating enough oxygen.
There are more struggles for sure, including intellectual disabilities, but many more kids are doing significantly better than their past generations. It costs more, is more work, but like the parent poster said, my experience certainly isn't extreme. We go to more doctor's appointments, have IEP meetings, and she's in speech therapy. She's generally been pretty healthy, happy and very active.
It was scary when she was born. We were given a pamphlet with a list of things similar to your first link. The reality though is she's more likely to have those than the general population, but some of those things are very rare. 100x very rare is still rare. Having all of those issues would be even more rare. The greater point though is that any kid can have those issues too.
To add to what magicalhippo said about the extremes of medical issues, the extremes of parenting seem appropriate. "Average" parenting follows a trajectory of intense parenting of a newborn, and end at light/no parenting of an adult. For an overwhelming majority of families with kids with DS, the intense parenting requirement last long and more progresses slowly and the trajectory plateaus at around the tween stage, where a significant portion of your day, every day, is dedicated to managing and caring for your child. I would say that spending tens of thousands of additional hours, likely up until your own death, caring for an adult child would count as extreme needs.
As the percentage of adults of ordinary abilities who fail to launch continues to rise, I wonder if we'll stop seeing this as a deficit specific to DS and other intellectual disabilities.
My 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.
The 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.
How does the reasoning behind the choice to end a pregnancy matter? If abortion is acceptable at a given point in pregnancy, the reason behind making the choice shouldn't be "cruel". How would it be any less cruel if it was a healthy pregnancy but the woman was not ready to raise a child?
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.
It'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.
The 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.
Another 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.
That 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.
I 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?
I 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).
They (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.
While "what is normal" is a reasonable question, a normal development is certainly closer to something that allows folks to achieve most things in any career/hobby/pursuit they choose.
Do you really see that as a "norm" being met by a majority of the population today? I don't think most people's lived experience is anything like that.
Normal being closer to what I said than what is usually achievable for folks with extra chromosomes? Yes, I do. I didn’t say it _was_ that anyone can achieve anything.
I 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.
Life 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.
I 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?
Down 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.
The 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?
This 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?
The same, which is why I support universal healthcare and expanding healthcare to include nursing support/housing for the disabled.
If someone gets cancer, then yeah they should be covered such that they aren't made homeless because of their disease.
If someone has a stroke that leaves them unable to work, again a social safety net that keeps them from being homeless should be in place.
The ethics are pretty simple. It's reasonable for a good society to support those in need through force of taxation. Just like it's good for a society to keep the water clean through force of taxation and regulation. Everyone benefits or has the potential to benefit from such a universal system that protects them from circumstances outside their control.
People are giving you shit because Down Syndrome sucks, but being deaf sucks too, and withholding hearing from kids of deaf adults is and was child abuse.
Cochlear implants aren't magical hearing restorers. If they were, you'd be right. But they aren't. There are limitations. Music is especially difficult to perceive properly.
Cochlear implants are not technically reversible, iirc.
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.
I know a guy who has down syndrome and he is the happiest guy I've ever met. Any time I see him, even if he doesn't see me, he is smiling and just looks like he loves life. When he sees me, or anybody else he knows, he gets the biggest grin on his face. When you talk to him, you can tell he is such a happy guy with no stress.
If that is not a benefit then I'm not sure what is.
I used to live near a down syndrome living facility. Essentially a house converted into a care facility in a neighborhood. ~8 - 10 people with downs lived there. Very few visitors (parents), almost all the cars belonged to the nurses. Isolated from everyone they lived around and kept away from the neighbors (I'm sure to the neighbors relief). required constant care. I don't think its a life most would choose.
If you never interacted with the residents there, how are you so sure it was so bad? Nevermind the people in the group home — on what basis did you acquire the belief that the neighbors were “relieved” not to interact with them?
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 was a neighbor...
I was friends with the neighbors.
I literally lived across the street from the home.
I'm sure the nursing staff was nice and they got as great a life as one could have in a group home.
I never claimed having downs invalidated anyone's existence, I simply stated that I don't think its a condition anyone would willingly desire if given an alternative.
Also they had an ambulance or fire truck there at least once every couple months.
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.
Last year?
Its just a house in a residential neighborhood. Neighbors obviously did not want to interact with them very often, limited to a wave if one of them was taking out the trash. The segregation is pretty much desired by the neighbors and understood by the nurses. No one raising a family really wants to have to interact with mentally challenged non family people every day of their lives. Keeping the interaction limited means complaints don't happen.
My experience of interacting with people who have Down’s syndrome is that they are especially outgoing, preternaturally friendly and just generally lovely to be around.
I’m not arguing for either side of the treatment/screening debate here, but vehemently against an apartheid-like view on how people with disabilities should be treated, i.e. not as outcasts but as fellow humans.
I agree, reality is though that they have special needs and for the most part are unable to care for themselves. The people in the home were there because their families were either unable or unwilling to do it.
Reality is that the vast majority of families don’t want a facility in their neighborhood. If downs could be prevented its an overall positive outcome. I wish nothing but happiness for those already affected
No. Down Syndrome leads to an objectively worse outcome for the affected individuals. And their parents, I might add.
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.
What is the objective standard? Subjectively, surveys consistently report that those who have DS and their families consider it a better outcome, so I'd like to know more about the details of an objective standard that ignores or overrides the reporting of those closest to the experience.
The 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.
I 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.)
genetics doesn’t care about your feelings. If a human has the genetic issue (issue with cell division on a specific chromosome…i forget which one), they’ll typically have severe developmental challenges in childhood. And if unlucky, end up nonverbal.
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. :)
We'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.
yes, naturally, almost every post I make on my throwaways is something political, in response to existing political comments or submissions, which are evidently allowed.
using throwaways to protect oneself from the terminally online crowd is pretty much a necessity in the current year, unless your values and opinions are firmly in the middle of the Overton window. and even then, there are many opinions that were universally okay 15 years ago can be used against you now. I've seen it happen time and time again.
> in response to existing political comments or submissions, which are evidently allowed
This makes me think that you might not have taken in the essential bit, which is the pattern of an account's behavior. Was that not clear from the above?
In case it helps, the issue is that we don't want accounts to use HN primarily for arguing about politics or ideology. That's an important test and has proven to be one of the more reliable ones, in terms of whether an account is using HN as intended or not (https://hn.algolia.com/?sort=byDate&dateRange=all&type=comme...)
Separately from that, looking at https://news.ycombinator.com/posts?id=123yawaworht456, I see other reasons to ban such an account—you've routinely been breaking HN's rules in plenty of ways which have nothing to do with your specific opinions. If your motivation is simply to protect yourself, as you say here, then I wonder why that would be.
The 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.
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.
The realistic reading is that: In the future, a treatment based on this technique could help parents going through IVF rescue more embryos from trisomy-21.
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.
not pregnancies in the traditional sense but IVF, as far as I understand. Many of my friends who are wealthy are doing only IVF to screen for negative genotypes
Using subtle sequence variants to distinguish and eliminate only the supernumerary chromosome, without harming the normal ones... I think that precision is a technical marvel
This research gives me a bit of hope. Although it’s still early and far from clinical use, it’s encouraging to see new treatment ideas emerging. I really hope we see more progress like this in the future that can truly help patients and their families.
I think it is worth a separate research that modern definition of progressive thought considers eliminating/treating a genetic malfunction "unethical".
It is an important point. Our understanding of what is “disease”/“malfunction” and how to address diseases has been changing.
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
This is not an attitude exclusive to progressives. The chief grievance here is that the historical “solution” to the “problem” of Down Syndrome has been abortion. Opposition comes from the pro-life movement (which is generally conservative) and disability advocacy groups (which are generally liberal).
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.
Hailing from a particularly conservative country I can tell you right now that it's not going to satisfy the conservatives, as their core belief is that the world is zero-sum and tampering with that, in their view, wrong.
As a conservative, my position on genetic intervention is about ethics, human digniity, and the sanctity of life and not some kind of blanket opposition to treating genetic disorders.
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.
It says that they've developed a way to identify the extra chromosome(s) passed to a child by a malfunctioning germ cell, specifically chromosome 21 though presumably this method could be reproduced for other trisomy diseases. This could, most immediately, lead to a therapy that allows a couple that is going through in vitro fertilization to repair a zygote that has trisomy by correcting the number of chromosomes it has, and preventing the resulting child from having Down's syndrome. This is relevant especially for older mothers, who are most likely to produce malfunctioning eggs that result in Down's syndrome
Harvesting eggs can be a huge strain both physically, emotionally and financially. And if you're older, and thus have elevated risk, you might get just a one or a few eggs per harvest.
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.
To expand on what notimetorelax said, egg harvesting is a low risk but not a zero risk procedure which involves preparatory hormone injections, twilight sedation, and ultimately sticking a pretty fat needle into the ovaries. There's roughly a 1 in 1000 chance of serious complications for any woman that goes through it. If you're over 40 and your last round of harvesting only produced a handful of eggs cells and all of them with some kind of defect, repairing a damaged egg or zygote would be much less risky for the mother. What exactly the cost of a treatment based upon this discovery would be, I have no idea, but both processes are resource intensive.
Hard to say with 100% certainty without a human trial, but the short answer is "probably not." This is a situation where a person has three copies of chromosome 21 in every cell. Shutting one copy down would, hypothetically, leave someone with two working copies. I don't think we have any reason to believe that trisomy is masking some other phenomenon that we won't see until a fetus with this treatment applied fully develops into a newborn.
(And that's of course assuming human trials were authorized. Probably not for this treatment in my lifetime, at least not in the US).
The comments on this here make me a bit scared tbh and shows yet again what a bubble this is. You people need to get out more and socialize with actual people.
No, I think discussing anything that essentially boils down to "some human lifes are not worth it" is not ok, no. There's always the slippery slope to consider. Especially if you're from Germany like me, that's one too far. History, you know.
We also would do good if we'd learn from books like 1984 or brave new world.
I have been wondering how culturally conservative societies would use future medical interventions that could shape people’s sexuality. Not necessarily the government requiring expecting mothers to subject the unborn child to some sort of “cure” for gayness. But parents doing this voluntarily and on their own. Even western couples might then be tempted to travel to countries permitting these treatments.
At the same time, it seems unlikely in the near future. It so happens that western societies will not fund this kind of research. And that culturally conservative countries do not have the scientific prowess to conduct research in this regard. Also, their scientists are busy developing nuclear bombs.
it wouldn't, if the implication of you wondering is supposed to be if someone will find and treat a "gay gene". Homosexuality is (like almost all complex traits[1]) influenced by thousands of genes in addition to environmental, social, cultural factors etc.
> Homosexuality is (like almost all complex traits[1]) influenced by thousands of genes in addition to environmental, social, cultural factors etc.
Homosexuality is also preserved across practically all social animals [1], and–I believe–absolutely all that form monogamous pairs. That isn't true for Down syndrome [2], which manifests much more like a disease.
Willing to bet money that it will, there's a ton of investment right now in what I'd call blatant eugenics.
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
It'a already possible to test for trisomy in a fetus. There's a newish method (NIPT) that does analysis on maternal blood which has very low risk (it's named non-invasive, but drawing blood is routine but not risk free). Having a treatment, if it's feasible, might be more (or less) paletable than ending the pregnancy when diagnostics indicate likely trisomy.
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.
When you're selling customers a big ticket item like that with one side of your mouth, and are failing to mention it to prospective hires, you have to go out of your way to dance around it.
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.
Yes, modifying genetics to select for "desirable" traits and remove "undesirable" ones is essentially modern liberal eugenics.
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.
Technically no, but only in the technical sense that makes the idea a little useless.
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.)
Genetic conditions are how they make it palatable, meanwhile they're telling race realist parents that selecting for/modifying X, Y, and Z genes will let them raise ubermensch.
IQ polygenic score companies do exist. Just look at the circle around Jonathan Anomaly and you likely will find them all. I know of a couple that are going to go full open this year.
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.
> You have to be of the right genetic origin because of the source data
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?
> the moral case against acting on same-sex attraction is strong
Explain to me exactly how the moral case against acting on same-sex attraction is strong without using religion (since not all people believe in religion).
You start off with premise that you expect everyone to agree "It's immoral" without explaining why exactly it's immoral.
Without justifying your point how can you expect "liberal spirited" people to discuss with you?
This would only be applicable to in-vitro fertilization, in which case there's no point in trying to remove the extra chromosome when you could just find another sperm donor that doesn't have Down Syndrome.
Interesting, I wonder what else this might lead too! Encouraging we might be getting somewhere.
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.
> 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).
One thing I know for sure is that the person I pass on my way to work always greets me cheerfully, even though I am a stranger to them.
There's something genuinely beautiful about people who live with that kind of unfiltered joy
And frequently we decide they’re damaged. Seems like its really the rest of us who are damaged.
There’s another side to this. They place a large burden on the people taking care of them. Many parents also report that they regret conceiving children with Down syndrome.
Is it just me or do I feel like the society is way more accepting nowadays? I had to pretty much hide who I was during school due to fear of bullying/ not fitting in but most kids these days seem to be able to be themselves in many ways. I agree we can be friendlier though!
Probably in general, but not as much as you'd think.
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.
Unfortunately I think lesbians are only "far more accepted" in the sense that they turn on straight cunts rather than repulse them. The objectification and othering is the same.
Maybe, but we can't blame people for what they are/are not attracted to on either side of the fence, just their rational responses to "the other".
And I'm not sure lesbians are "far more accepted", perhaps as long as they fit a traditional heterosexual idea of beauty and femininity and associated behaviour.
> but we can't blame people for what they are/are not attracted to
That's an odd thing to bring up randomly.
I think it's because you said "cunts" lol
Ah the "straight" was the adjective to qualify the noun, not the other way round! I.e. the same cunts who will get disgusted by two men kissing and try to harm them, will get turned on by seeing two women kissing and therefore it appears that the latter are more accepted. It's not kindness or open-mindedness, it's pure sleaze.
How much of that is a reflection of or reflected in societal acceptance vs just a figment of differing societal attitudes and standards toward women and men?
I'm not an expert but I'm pretty sure the definition of "straight cunts" is that they aren't turned on by lesbians.
I think that the GP must not be American.
I noticed in Ireland (at least) the word "cunt" is used to describe an unpleasant/objectionable person in general (regardless of gender) whereas in the US it's a derogatory term for a woman.
There's at least four possible parsings here depending on what was meant by "straight" and "cunt"
In one corner of the matrix is a heterosexual woman and in the other corner is an ill tempered gay man.
Indeed, its a non-gendered term here.
> Unfortunately I think lesbians are only "far more accepted" in the sense that they turn on straight cunts rather than repulse them. The objectification and othering is the same.
"Straight cunts"?
The intersection of straight people and cunts. Not to be confused with "straight people are cunts," which is a different statement.
I'm still fascinated by how talk of Down syndrome, a universally acknowledged disorder, brought up same-sex attraction. A hit dog will holler?
The comment that started this thread wasn't about Down syndrome, it was about Down syndrome being more accepted because society is more accepting with lesbians being appreciated as the example.
I do think people - and especially kids - are generally nicer and more accepting than they were back in the 80s when I grew up. I wonder if this is related to the fairly dramatic drop in violent crime statistics we've been seeing over the last several decades?
There may be a connectedion to reductions in lead-poisoning. https://en.m.wikipedia.org/wiki/Lead%E2%80%93crime_hypothesi...
Lead-free petrol helped.
It’s fun to imagine that an alternative reality where lead was never added to petrol. We’d be colonising neighbouring solar systems by now and living in a post-scarcity society.
I notice that some of the teens my kids are friends with are pretty weird in ways that would have invited extreme bullying when I was their age and they don't seem to have the same troubles. However, I still hear about some bullying cases. Maybe that's changing for the better too though, when I was their age we seemed to actively hide that we were bullied from adults and now adults are often (ineffectively) involved.
I have two teenagers, and bullying is still extremely common in school.
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.
That really depends on where you are in the world right at this minute.
It's just fashion I think - for the last 10-15 years the idea of being a nerd who works for Google or whatever has been relatively cool.
You’re right the world is a lot more accepting. No matter how much things improve and how positive the trajectory though, there will be someone online who tells us it’s not enough
It didn’t just happen. It happened through struggle and its continuation is not guaranteed. Look at all the reactionary movements springing up around the world. This is not an area I believe we can settle on “good enough”.
I think societies somewhat naturally wax and wane on most topics, probably because it seems we're simply unable to maintain a middle ground on anything. We always end up taking things to an extreme which, regardless of what that extreme may be, tends to lead to unpleasant scenarios which causes society to start bouncing back in the opposite direction only to repeat the cycle in the equal but opposite direction some time later.
You can see this playing out in real time with religion which went from societies that were highly religious to secular to militantly anti-religious, and now gen-z is suddenly some ~400% more religious than previous generations. [1] The most interesting thing is that that's also a global trend, probably owing to the relative global homogenization of societies in many ways.
[1] - https://www.axios.com/2025/05/10/religious-young-people-chri...
Except that there's a difference between extremes. In political-left world, everybody has health care, access to housing and a liveable salary. In a political-right world, people are deported and killed, and the unlucky ones (i.e. the poor) live on the streets and can't afford to visit a doctor.
You haven't seen much of the world, have you. What you say is patently untrue.
Access to housing is nowhere in leftist countries (also what does that mean, failed social experiments in South America, France or someplace else? russia and China are highly capitalistic dictatorship, nothing left leaning there). Liveable salary guarantee - nope not true check how folks serving you at mcdonalds live. Healthcare ain't completely free anywhere, ie dental care is super expensive all across Europe. But this past point is closest to truth in some places.
I should have said "should have...", maybe this was not clear. I am not claiming tha there's a "perfect" country. Some countries come pretty close though, where you have affordable public transportation, affordable housing and affordable health care. For example and Germany and Switzerland (two countries where I have lived for long periods of time), nobody will die because they can't afford health care. Nobody will be homeless because they can't afford an apartment (yes, I know, there is also homelessness in these countries, but for a variety of other reasons).
Doe that mean it's perfect? No, of course not, there is always room for improvement.
The place he described exists only in the mind of avowed leftists, who refuse to accept that it will never be realized but are more than willing to force others to suffer in order to try yet again.
Most communist countries haven't been such a utopia as you describe.
>He told his fellow Russians in his entourage that if their people, who often must wait in line for most goods, saw the conditions of U.S. supermarkets, "there would be a revolution."
https://www.chron.com/neighborhood/bayarea/news/article/When...
I am not talking about communism. Nobody on today's political left spectrum of is seriously talking about communism. This is about socialism, or social capitalism.
Cool story from an alcoholic traitor
> On 2 January 1992, Yeltsin, acting as his own prime minister, began a major economic and administrative reform ordered the liberalization of foreign trade, prices, and currency. At the same time, Yeltsin followed a policy of "macroeconomic stabilization", a harsh austerity regime designed to control inflation. Under Yeltsin's stabilization programme, interest rates were raised to extremely high levels to tighten money and restrict credit. To bring state spending and revenues into balance, Yeltsin raised new taxes heavily, cut back sharply on government subsidies to industry and construction, and made steep cuts to state welfare spending.
> In early 1992, prices skyrocketed throughout Russia, and a deep credit crunch shut down many industries and brought about a protracted depression. The reforms devastated the living standards of much of the population, especially the groups dependent on Soviet-era state subsidies and welfare programs.[108] Through the 1990s, Russia's GDP fell by 50%, vast sectors of the economy were wiped out, inequality and unemployment grew dramatically, whilst incomes fell. Hyperinflation, caused by the Central Bank of Russia's loose monetary policy, wiped out many people's personal savings, and tens of millions of Russians were plunged into poverty.[109][110]
Communism in Russia proved to be great at producing alcoholic traitors, because the material conditions and quality of life it produced was abysmal.
So yeah, people drank a lot and got the fuck out when they could.
You know, for all their ills at least the historical communists meant well. Sure, some of them were pretty f-ing brutal but at least they tried to make their societies better, tried to make their countrymen richer and more prosperous.
The comparable people today telling us we have have to live under constant surveillance and be subjugated by all powerful governments and government intertwined institutions and organizations or otherwise losing all our rights and practical autonomy to various collective interests don't even do us the courtesy of pretending that the goal is to everything better and nicer. They just tell us that we'll all gaslight ourselves into liking the bugs or whatever and that despite everything being worse it's somehow better because stonks up and microplastics down, or whatever other metrics they also control.
Who is this imaginary "historical communist" you mentioned?
You're claiming Mao killing millions with idiotic policies (not to mention all the scapegoats he killed intentionally) was okay because he was "trying"?
Or are you talking about Stalin, Lenin, or Castro?
Who is telling you that you "have to live under constant surveillance" and so on?
You'd rather have someone run the country into the ground while lying to you about than intentions (which you're gullible enough to believe apparently, for better or worse) than not?
I have no idea what is happening in our schools these days, but obviously something is lacking.
"Who is telling you that you "have to live under constant surveillance" and so on?"
I was born in the US, didn't have a choice!
You think you live under constant surveillance in the US? While there might be more surveillance than you like, claiming there is constant surveillance everywhere in the nation (or anywhere really) is ridiculous.
You highly and vastly underestimate the scope of data collection.
I can't speak to other countries, but here in Israel at least, religion is highly correlated with number of children.
Focusing on jewish women, fertility rates for different levels of religion in 2021-2023:
So naturally over time the religious portion of the population grows.And this follows globally - fertility is one of the most interesting and critical issues of our time. It's going to change the future in ways most absolutely do not appreciate. On this topic most people see the world as inevitably becoming more secular because that's how society has trended during most of our lives, so it seems almost like a natural law. Yet even fertility alone means that society will almost certainly become substantially less secular over time.
This also has implications for the long-term population of Earth. The claim we'll reach a "max" population sometime this century is quite silly. It'll be a local max, not a global max. Because if even a single group maintains a positive fertility rate, that group will eventually drive the population to start increasing again (and basically take ownership of the gene pool while they're at it).
> It'll be a local max, not a global max.
There really isn’t any way to know this for a fact. The future could hold technology that allows us to expand far beyond the current population, but it also could lead to setbacks that the population never recovers from. It is reasonable to guess it’s a local max.
I think this argument would make more sense if it were external constraints that were driving a declining population. But the population is only decreasing because the majority group of people stopped having children. So they will remove themselves from the gene pool, the minority will become the majority, and away we'll go again.
As an interesting factoid the Roman Empire, which for many people of the time would have had some analogs to 'the world', also had a fertility collapse prior to its end, that they tried to combat with quite strict laws, but ones which were ultimately ineffectual. Of course that was hardly the end of the story!
That story is trying to paint this as a revival of Christianity but looking at the Pew report and the data paints a different picture.
Conservative Muslim countries show a pattern of overwhelming male dominance in religious service attendance. At the same time, over half of the Muslims in the US are recent immigrants [1]. This raises the question to me: is the resurgence in religious service attendance among men driven primarily by a broad return to the Christian church? Or is it largely an effect of the growing Muslim population in western countries?
[1] https://www.pewresearch.org/religion/2018/04/14/muslims-in-a...
I'm not a huge fan of Axios, but chose to link to them for two reasons. (1) They leave their stories bullet pointed instead of feeding them into an LLM, or a human LLM, to add 5,000 words of fluff, and (2) they use extensive citations. Here [1], for instance, is a recent Pew study they linked to. All the studies have Christianity as the driver. And FWIW church itself is not a neutral term. Church => Christian, Mosque => Muslim, Synagogue => Jewish, etc. A neutral term would be 'attending religious services' or whatever.
The sex issue also seems to be just Axios' spin. By their own numbers it looks like church attendance is up 3x for women and 5x for men amongst Gen Z. Definitely a significant difference, but not really in line with their spin on the topic.
[1] - https://www.pewresearch.org/wp-content/uploads/sites/20/2025...
I do appreciate their citations but the spin is a bit much. I’m still very skeptical about the interpretation of a “return to religiosity” rather than religious immigrants continuing their religious observances in their new home countries.
To show a proper “return to religious observance” (any religion, not just Christianity) means showing a large number of people who attend religious services regularly but whose parents do not.
I agree that immigration is probably playing a role, perhaps even a significant one, in these numbers, but at the same time this is also expected even without immigration. Religious families are having more children which means that, over time, there would be an inflection such that a generation starts becoming significantly more religious than the one prior - even if it's 100% because the children of that generation were born to religious families. Bringing over large numbers of religious immigrants is just speed running this endgame.
Yes perhaps I should not have focused on immigrants when the overall question I want to ask is if this effect is driven by religious subgroups/subcultures which include both immigrants from religious countries as well as people from religious communities within the US.
My hypothesis is that we’re not seeing much of a “return to religious observance” from children of parents with low/no religiosity and that nearly all of the resurgence is driven by the aforementioned religious subgroups.
Generally that's because they're in the group (or have some sympathy for the group) that still isn't being accepted and may otherwise face obstacles that make it difficult to live a fulfilling life.
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.
The world can absolutely be more accepting of certain groups than in the past, while at the same time being less accepting of other groups.
If you were part of the latter, you would instantly understand why we still have a lot of work to do.
It's ok to say "we can do better" even when we already are.
As someone that lives as multiple minorities, both visible and not, this is very much untrue.
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.
The whole world (not just America) has polarising hateful propaganda aggressively pushed at them for... oh about 2-3 generations now.
There's a lot of people that have woken up to this and are loving and accepting, and sometimes it can feel like this is becoming the norm when you're able to surround yourself with that kind of person... but you're right. It isn't "the norm" it just normal enough for some lucky people.
> The whole world (not just America) has polarising hateful propaganda aggressively pushed at them for... oh about 2-3 generations now.
Could you please expand on that? I have no idea what you are talking about.
Not the OP, but they're possibly referring to hatred of "others", a group far enough geographically or away from social acceptance, that people don't see any issues in the future with holding aggressive / intolerant views on them now.
I think a lot of social acceptance today is a mask. It's something people put on to virtue signal in the age of social media, and they expand their appearance of tolerance as wide as is currently socially acceptable to avoid anything being used against them in the future. You can see these masks slip occasionally.
My wife was originally born in Russia. She's lived outside the country for over 2 decades, is as little aligned with that country's politics as you can be, and is generally a very likeable charismatic person.
I've seen some incredibly "tolerant" and "accepting" people (of religious, ethnic, sexual, nationality aspects) who are unaware of her nationality spurt out the most vitriolic opinions of Russians (mostly when something relevant appears in the news), sometimes pretexted with "all" or "majority". In the environment these "tolerant" people live in, Russians are an acceptable group to hate en-masse. Many other nationalities also apply.
Many times she doesn't say anything, but when she has, you can see the mask going on in real-time. "Not all", "not you", "except you", backtracking and saving face.
Yes, and there will be others rolling their eyes and calling out all this "woke" acceptance.
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.
New bigots and racists are made every day.
Nothing went away, it just got hidden under a thin veneer.
> are slowly dying off.
Far too slowly, I might add.
> there will be someone online who tells us it’s not enough
And they would be right. And I say that as someone who’s hard anti-woke.
We live in a largely more accepting world that somehow exists in the same timeframe as "empathy is a sin". No matter how far we come as a society, there will always be people looking to "Make X Great Again" regardless of how great or not X ever was. Unfortunately humanity cannot rest on its laurels. No matter how much we advance as a civilization there will always be a conservative somewhere looking to pull up the ladder or cut off support. Ultimately looking for a way to game the system and deny benefits to others. It's quite amazing that we can look back on all the advances humanity has made in the last few centuries and can clearly see conservatives opposing all of it and somehow still rationalize conservatism as just some other process to achieve the same goals through other means. Yet at every major inflection point in our country conservatism has been the fucking enemy. They have been wrong. Every. Single. Time. When conservatives rebelled against the country and decided to start their own so they could maintain slavery, they were wrong. When conservatives fought against women's suffrage. They were wrong. When conservatives fought against civil rights. They were wrong. When conservatives fought against gay marriage. They were wrong. They have been wrong at literally every fucking important decision since their ideology was created during the French revolution. It's beyond time we stop pretending they have some insights worth listening to or some valuable lessons to convey and treat them as the enemies of humanity that they actually are.
You've mis-defined "conservative" to mean "everyone who lost in history".
“Conservatives” yearn for an idealised version of something that has been, but that is no more. In that, they are the very definition of sore losers.
You've done it too.
Can you elaborate on that?
Ironically, this is the least empathetic message in this thread.
You're also wrong: there were plenty of "anti-war protestors" during the Holocaust, who lost, and were wrong; plenty of radical feminists who were (and are) anti-trans; and the idea that the American Revolution was primarily about maintaining slavery has been debunked — for one thing, it was often led by Northeners who had already banned slavery. (The 1619 Project eventually conceded and issued corrections.) Environmentalist groups in the 70s doomed the planet by making it near-impossible to build nuclear energy in the US, and then later drove the US into spiraling inequality by making it near-impossible to build enough housing. Opposing eugenics was once a conservative opinion, whereas the "science" of eugenics was favored by academia — and most of the suffragettes! The largest anti-eugenics movement came from the Catholic Church.
Of course, new ideas that were better than old ideas usually came from people now termed "progressive" — the term is self-defining (if it wasn't "progress" no one would look back and call it "progressive.") But plenty of bad ideas have also come draped in the cloaks of people who term themselves progressive, and opposed by people who at the time were termed conservative: it's only in retrospect that we rewrite the people in the wrong as not-progressive, and consider the people then termed conservative as the true-progressives. Ultimately most people want good things for most people, and mainly argue — sometimes vociferously, and acrimoniously — about what the best way for that to happen is.
It seems to me there are two types of conservatism: concern about a change to society that does not have a clear evidential basis (which I'll call "small-c conservatism"), and a desire for other people to not have nice things (which I'll call "capital-C Conservatism").
If you read early radfems' complaints about trans women, you'll see concerns about men infiltrating the burgeoning movement to subvert or destroy its ability to effect much-needed substantial societal improvements for women. Nowadays, internet access and 10 minutes can disabuse you of this notion – but in the past, you'd have to have talked to an out, activist trans woman (who would often adhere to a different school of feminism to you, which if anything is evidence that she is dangerous to the Cause!) or had the right zines circulated to your doorstep (not really an option until the 90s, by which time it was generally understood that Transphobia Bad, the debate was about to what extent trans women's experiences were central to the Cause ("only tangentially" versus "in every respect"), and everyone knew you could pick up a Judith Butler book from your local library), to receive evidence to the contrary.
Likewise, the Catholic Church's conservative opposition to eugenics: they raised concerns about the human rights of those subject to eugenics practices, and later added secular arguments as justification. Contrast their opposition to trans people, which is… theologically confusing, to say the least: the existence of trans people "erases differences" (Galatians 3:28), distorts the image of God (Genesis 2:22), and (I seem to remember one bishop claiming) has already killed God… somehow. (Perhaps Pontius Pilate was secretly transgender? (This is me being silly.)) The justifications are all over the place, as is characteristic of post-hoc rationalisations of Conservative bigotry: replace the vague unevidenced claims about God with vague unevidenced claims about "nature", and the Catholic claims become the same rubbish as TERF claims. (Obligatory note: many Catholics do hold coherent views on this topic: I'm talking about the overarching organisation, not the people, or even all parts of the organisation.)
Small-c conservatism is a strategy, and isn't right by accident: it's an application of the same principle as Chesterton's Fence. Capital-C Conservatism is about denying resources and happiness to perceived enemies, while harming them as much as you can rationalise while still calling yourself a good person. (There are no capital-C Conservative policies that do not involve hurting people, prohibiting social mobility, or restricting what kinds of people are allowed to exist: many of them can't possibly qualify as small-c conservative policies, because they're only "conserving" an imagined past. Anti-immigrant sentiment in North America is one example: https://xkcd.com/84/.)
To undrape the cloak, we can look at how people talk about their ideas, and how they respond to criticism. (And remember not to focus on those calling themselves "conservative". Many "progressives" are actually capital-C Conservative, with a different – but no less harmful – idealised-state-of-nature: many modern-day eugenicists work in autism "charities", promoting "progressive" torture "therapies".) Unfortunately, this does not tell us which ideas are good, and which are bad: to find that out, you have to look at reality, not study rhetoric.
Most people may want good things for most people, but many people wilfully delude themselves about what "good things" means. Those, perhaps more so than the liars, are the dangerous ones.
> It seems to me there are two types of conservatism: concern about a change to society that does not have a clear evidential basis (which I'll call "small-c conservatism"), and a desire for other people to not have nice things (which I'll call "capital-C Conservatism").
False dichotomy [0]. Basically a bunch of sophistry to say "all conservatism is bad."
> the existence of trans people "erases differences" (Galatians 3:28),
You can't just quote the Bible without providing a translation, and I can find no translation with this wording. I would suggest that you refrain from commenting upon other cultures that you are ignorant of, as this is a form of cultural appropriation at best, and active bigotry at worst.
Same with your supposed "quotations" of Genesis 2.
> Capital-C Conservatism is about denying resources and happiness to perceived enemies,
Apply principle of charity [1].
> [...] while harming them as much as you can rationalise while still calling yourself a good person.
> Many "progressives" are actually capital-C Conservative, with a different – but no less harmful – idealised-state-of-nature: many modern-day eugenicists work in autism "charities", promoting "progressive" torture "therapies".)
On this we can agree - I don't actually see much difference between progressives and conservatives; they all fall prey to religious and superstitious thinking. All this self-aggrandizement about how diverse and inclusive one is, all the moralizing and ethical high-horsing, is really just a series of magic incantations the progressive chants to themselves to "psychologically manage the results of living in a materially deeply unequal society," [2] without actually needing to do anything about the material reality. Not so different from the way the sinner takes a dunk in a bathtub of water and is now "born again, free from sin," doesn't take the Lord's name in vain, uses gender-neutral pronouns, and wears a crucifix or a Pride flag - take your pick of religious idol.
[0] https://en.wikipedia.org/wiki/False_dilemma
[1] https://en.wikipedia.org/wiki/Principle_of_charity
[2] Liam Kofi Bright, "White Psychodrama." https://philpapers.org/archive/BRIWP.pdf
> You can't just quote the Bible without providing a translation,
The quotation was from Pope Francis. The Bible reference (one of Saint Paul's letters) was me being facetious. Same with the Genesis reference: transphobic Catholics cite Genesis 1, but if you try to interpret Genesis 2 by the same logic, it says the opposite (and more definitively): the bigoted reading is eisegesis, and not even particularly good eisegesis.
For the record: I also think "my" reading of Genesis 2:22 is eisegesis. Very little of the Bible has to do with trans people specifically. Those passages of the Old Testament which do are best interpreted by an Orthodox rabbi, since they can't really be understood out of context (which hardly anyone else bothers with learning); and the few things Jesus is recorded as having said about trans people (that is, people who'd fall under the modern umbrella category "transgender") were positive; but trans people have little spiritual significance in the major Abrahamic religions (as compared to, say, Hinduism) and aren't major characters of any of the narratives, so there was little reason to say much about them (until the Talmud, which has rulings about a lot of uncommon situations, such as the appropriate treatment of many minority groups – but dates to after Christianity's split from Judaism and isn't really regarded by Christians).
This specific example wasn't my point. The Catholic Church is one of the few organisations in reissbaker's comment that's been around long enough to have taken a strong stance on two of the topics mentioned in the comment. (And I don't know enough about their take on slavery to neatly categorise it as small-c conservatism or capital-C Conservatism: from what little I know, it seems more like Realpolitik.)
> Apply principle of charity
That is me being charitable. There are harsher ways to apply "the purpose of a system is what it does", here.
I want to say yes, but there's a lot of regression happening right now, with right-wing rhetoric, manosphere influencers, and various regimes pushing the other way - the Trump admin firing people, removing symbols and renaming things that they consider "DEI" for example, or teenagers thinking women are property thanks to people like convicted sex trafficker Tate.
The latest is that the Trump admin wants to institutionalize the homeless and "people with mental disabilities".
> Is it just me or do I feel like the society is way more accepting nowadays?
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.
== 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.
This person has the support they need (institutional and otherwise) to be healthy and happy and they have something they can connect to and express themselves with. How is that a token manner?
That's not what they said.
That kind of joy, personality, and presence is somethin5g you can't quantify in a lab. Whatever this research leads to, I hope it's always guided by compassion
I run the risk of being downvoted on this issue, but there is a personality type associated with downs syndrome. My experience of living in a community of down syndrome young people certainly supported this, but there has also been quite a bit of research on the matter... search Google Scholar and you will see a ton. In brief: very social, positive minded and very creative. Importantly, this seemed not to be effected by puberty, unlike the autistic kids I have known. The year I spent in there company was a gift.
Edit: user smeej has cited a few papers on this matter.
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What a hostile and uncharitable thing to say.
Youre right, its a though question. Then again free will and the concept of "self" is an illusion.
Lets see where the world will go in this regard, only time will tell
>Then again free will and the concept of "self" is an illusion.
You don't need to follow this line of thinking very far to justify a hell of a lot of evil.
With this new gene information, we may be able to make every Down's. The world would be a much nicer and happier place.
Until food runs out.
we are going to become very good at this. eliminating genetic errors, choosing to be straight, tall, etc
Reminds me of that story about the casting of Patrick Stewart as Picard. Apparently Roddenberry originally had in mind a youthful, virogous figure much like William Shatner was for Kirk. So Stewart auditioned in a toupee to compensate for his baldness. An impressed Roddenberry realised that the toupee was pointless. Later when a reporter asked him why baldness hadn't been cured by the 24th Century, he said that society would be so advanced that no one would care anymore.
We need to be extremely careful with what we consider “errors”. We’ve been through this before and it never ends well.
...blonde, blue-eyed, round-eyed, strong-jawed, big-dicked, big boobed, you name it, you can have it!
Five out of six ain’t bad. Though, if my man boobs get a bit bigger…
As long as you can pay for it. Not everybody can drive Ferrari. (Or rephrasing a USSR movie quote - A society without an upper/lower differentiator has no purpose)
[Mutual] Happiness isn't a purpose?
> big-dicked, big boobed
And Facebook is already, with no ironic self-awareness, showing me ads for both.
The irony will be that once everybody is that, it won't be attractive.
Homosexuality is not genetic.
Interesting.
Where do traits that aren't genetic come from then?
It's complicated. The most compelling theory is that several genes might have a bit of an influence paired with the hormonal conditions in the womb. Here's an overview:
https://en.wikipedia.org/wiki/Epigenetic_theories_of_homosex...
A variety of sources[1].
1. https://pmc.ncbi.nlm.nih.gov/articles/PMC4262890/
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See, it's stories like this one that make me really question just how ethical it is to completely eliminate Down's from the gene pool. I understand it's the correct medical and scientific thing to do, it's just that it sometimes feels a little bit like eugenics for me.
Seeing a minute fraction of their existence is a rubbish way to make a judgement.
Most of they bring to the world is random rage, unspeakable fluids, and unpleasant interactions.
But I guess driving past safari style is fine.
Do you live or regularly interact with someone who has Down Syndrome, or have any kind of data that would support the idea that people with Down Syndrome are exceptionally violent?
What a terrible thing to say. You have a lot to learn about them.
What? Are you talking about real, live people with Down Syndrome? Surveys have consistently shown that they and those who live with them (which is no safari) are happier than everyone else. That wouldn't make much sense if "most" of what they bring to the world is "unpleasant interactions."
Counterpoint. My youngest son has DS. He's an absolute nightmare sometimes.
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.
I feel you.
I've got a 13 year old daughter with DS. We don't have 6 hours of screaming but she has definitely thrown her share of hissy fits. My personal favorite was driving into my son's snooty private boy's school while she was sitting in the back without a shirt on (She was 12 at the time).
Or the time she decided to sit down in the middle of a busy street while we were trying to cross it and we ended up dragging her across the road skinning her feet and almost getting hit by a truck.
Usually she is happy and has tons of personality but it really does make things harder at times.
I should probably add my that my usual comment when anyone asks is that having a kid with DS sucks but not as badly as a lot of other disabilities.
> Surveys have consistently shown that they and those who live with them (which is no safari) are happier than everyone else.
Can you point to any that you have read?
Here are a couple:
- Parents: https://pmc.ncbi.nlm.nih.gov/articles/PMC3353148/pdf/nihms37...
- People who have DS: https://pmc.ncbi.nlm.nih.gov/articles/PMC3740159/pdf/nihms37...
- Siblings of people with DS: https://doi.org/10.1002/ajmg.c.30101
> A valid and reliable survey instrument was mailed to 4,924 households on the mailing lists of six non-profit Down syndrome organizations.
Definitely no sampling bias here... And given that the vast majority of people who do prenatal screening decide not to have a child with Down Syndrome, I don't think the people who choose to have a Down Syndrome child are really representative of prospective parents as a whole.
The revealed preference is clear, particularly in places like Iceland where prenatal screening is ubiquitous. They have effectively eradicated Down Syndrome going forward.
The perspective in question is about what it's like to raise a child with Down Syndrome.
Why on EARTH would the opinions of people who were so scared of the experience that they never tried it at all even for a minute be relevant to that perspective?
Thank you. I hadn’t seen any of the literature on this.
There must be some selection effect at work. "Those who live with them" are the ones who have chosen to live with them, which excludes:
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.
Of course there is, but when the perspective being asked is, "What's it like to raise a child with DS?" the only people who validly have an opinion are parents of kids with DS.
A different N==1, a friend and coworker of mine had a son with DS at 23. He's now the oldest of six children. They're doing great, and he's a terrific big brother.
I think the studies matter because N needs to equal more than 1 to get a sense of how it goes for the people who do it.
It is eugenics, I just don't see how that's a problem. Eugenics isn't inherently bad, you're just thinking of bad eugenics.
Right, there’s eueugenics and dyseugenics.
no slippery slope here, nope.
Slippery slopes abound everywhere.
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.
> because we don't know the limits of our own ignorance
oh boy, would we fare better with a lot of stuff if we'd consider this before releasing shit into the wild (asbestos, ptfe, plastics, AI and so on).
If you marry someone to whom you’re attracted, check she’s mentally stable, reasonably healthy, aka reproductively fit, then you’re engaging in eugenics. Eradicating downs is eugenic. It’s also a good thing.
Don't worry, you can still add alcohol to the fetal growth stage to get Epsilons. No need to leave it to chance.
Wait what's wrong with voluntary eugenics? Perhaps the fact that something both "feels like eugenics" and is understood as the "correct medical and scientific thing to do" should cause one to reassess any unexamined, knee-jerk, blanket revulsion to the concept of eugenics that one may have.
Well, the test is simple - would you like to get Dawn chromosome yourself? Or may be have your children get it? I’m sure the answer is No.
That is not a simple test. Ask any straight person if they’d want to turn gay, the vast majority would say no. My guess is they’d say no if you asked the same question about their children.
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?”.
Would you want your children to be gay? As a straight person, given the choice I would want my children to be straight, so they could have biological children with their partner and a dating pool of ~48% of the population rather than ~2%. Those are pretty clear objective advantages, even putting aside the issue of societal acceptance.
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.
"Would you want your children to be gay?"
It may be a corny answer, but i just would like to have them have a happy healthy life. So, i don't really mind or care if they'd be gay or not.
They could always foster some gay kids.... obviously being gay they won't be having gay kids via sex.
It's a hypothetical question... But plenty of gay people have children through surrogacy, or they adopt prior to determining the child's sexuality.
I wouldn’t want to impose that on my children either way. I’d prefer to let nature decide.
There’s no way in hell I’d want to select for straightness in my children. That is frankly insulting to me to even suggest.
>That is not a simple test. Ask any straight person if they’d want to turn gay, the vast majority would say no. My guess is they’d say no if you asked the same question about their 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.
Gideon’s Crossing:
“[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?”
>But I’m gay, and while there are pros and cons to it, I wouldn’t trade it for anything in the world.
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.
My comment makes it clear I’m not comparing the two, I’m just saying it’s not a good argument as it does not hold for other cases.
>I’m just saying it’s not a good argument as it does not hold for other cases.
No. It does hold for other cases where severe impairment is present.
>My comment makes it clear I’m not comparing the two
exactly. Because your case doesn't contain severe impairment. When such an impairment is added - like say making you a father of a gay child in Chechnja where you have to commit a "honor killing" of that child to save the rest of your family - the cases become much more comparable. I'm pretty sure that in Chechnja you'd choose DNA edit to remove gay gene from your child if you're given that choice.
Isn't all life just trying to survive, adapt and overcome?
FWIW, since Down's is caused by (we're pretty sure) mitotic error, it can't be completely eliminated from the gene pool. 99% of cases did not occur on hereditary lines. With or without the existence of the treatment, Down's cases would continue to surface. So it's in the category of "treatments parents could choose to apply to their offspring," and generally parents get pretty broad leeway there in choice of the kind of offspring they're aiming for (starting with dating the guy with pretty eyes or the girl with the cute hair thing).
... 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.
As the parent of a child with Down syndrome, I really appreciate the way you and the parent comment approached this topic. Thank you.
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.
I don’t think this is true. Two counterexamples: Huntington didn’t have Huntington’s; Wilson didn’t have Wilson’s.
I had to look both of those up, and you’re right. The rule is inconsistently applied for sure. This got me curious about where the so-called rule came from. Wikipedia says:
> Auto-eponyms may use either the possessive or non-possessive form, with the preference to use the non-possessive form for a disease named for a physician or health care professional who first described it and the possessive form in cases of a disease named for a patient (commonly, but not always, the first patient) in whom the particular disease was identified.
https://en.wikipedia.org/wiki/List_of_eponymous_diseases#Aut...
This is sourced by a link to the American Association of Medical Transcriptionists, which is not a body I’d heard of but I guess have some skin in the game when it comes to the intersection of medicine and grammar. https://www.mtstars.com/word-For-eponyms-AAMT-advocates-drop...
I never knew why the possessive wasn't used, thank you!
In the UK for example we don’t go for this performative anti-apostropheism that Americans are so fond of. So it really depends on where you’re from.
“Performative” feels a bit judgmental, given that America/UK differences in orthography are common. But yeah, y’all spell it differently than we do. I think you might also capitalize the “s” in syndrome?
Thank you! I will keep that in mind.
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I don't see how it is ethical AT ALL to let new children have Down syndrome when we have the ability to eliminate the gene.
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.
The social effects at scale are what bothers me. Just wait a century until employers put "no genetic defects" in their job applications. Or parents who decide to have old fashioned non-designer babies have trouble getting their kids insured. Or homophobia will become normalized again because "they should have fixed it in the womb". Is this a sufficient reason to not prevent genetic defects? Who can say.
This was the premises for the movie Gattaca (1997). One of my favorite movies as a kid.
It's one thing for the parents to decide, quite another for a bunch of politicians to decide who gets to be born.
This research is about removing the extra chromosome, so having the same child be born without the disease, not about aborting the child...
So there is a moral imperative to abort fetuses with Down's syndrome?
Wow, that is certainly difficult to explain.
Now abortion has become a moral imperative in some cases...
The article is literally about removing the extra chromosome and not aborting the fetuses...
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.
> just how ethical it is to completely eliminate Down's from the gene pool
wait.. what?
It was well on its way to being eliminated in much of the First World through screening during pregnancy at around 2-3 months. Alot of mothers were electing to terminate the pregnancy and perhaps try again.
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...
> Some bioethics experts are concerned
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?
Many ethicists value the continuation of someone's--anyone's--(literal) life over the continuation of anyone else's lifestyle.
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.
Down screening is done at like 16 weeks. At 16 weeks that's hardly a life.
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.
>Biologists from 1,058 academic institutions around the world assessed survey items on when a human's life begins and, overall, 96% (5337 out of 5577) affirmed the fertilization view.
https://pubmed.ncbi.nlm.nih.gov/36629778/
Just achieving the definition of alive doesn't grant you power over other human beings. It is not personhood.
Ethics are more complicated than a black and white definition of when a magical boundary has been achieved.
It’s alive as a zygote, so without even looking at the paper I don’t disagree. The person you responded to said “hardly a life” though, so I don’t think they literally mean is it a cell that’s alive.
It's a unique living organism. A life. Different from a skin cell which isn't a unique organism.
Yes, but that is not a good arguments. Example of unique living organisms include bacteria, tardigrades, or paramecia.
Yes, but none of those are of the human species. A Hunan zygote is a unique living human organism, and I think history has shown us we must at least be very, very careful when we start arguing that some unique living human organisms are different enough from the unique living human organisms that matter that it should be morally acceptable to kill them.
Maybe this really is different from all the things about which we've later lamented, "Never again!" but we certainly ought not consider that criterion easily satisfied.
> unique living human organisms are different enough from the unique living human organisms that matter that it should be morally acceptable to kill them
I think what we should care about isn’t human life, but human consciousness. A person in a vegetative state doesn’t suffer when you pull the plug. The difference matters and is unmistakable between large organisms which have gone through a long process of development and tiny ones which have not; we should reasonably presume that only one of the two is conscious given no further evidence.
The likely response is the potential argument, and I don’t care about that. I care about human suffering.
“Never again” has been said in a completely different context: fully developed humans killing other developed humans systematically on a huge scale across years. Don’t confuse ethnic cleanings and genocide with fully voluntary abortions, as sad as they may be.
I have a different opinion than yours. So what if that's some, very narrow definition of life? If I develop a tumor is it also a life? It certainly behaves so.
World is full of human life. West (and not only) manufactures failed wars that killed millions of civilians without a blink of an eye (Vietnam, Iraqs, Afghanistan just to name a few) and sends its own people to death. Where are those life-at-all-costs defenders?
Such people are the last to force their own viewpoints on protecting life unto literally everybody else. Yet they feel the most righteous due to whatever fucked up morals they have to spread them and attack everybody who dares to think differently.
Another story - very similar people (to the point of calling them often the same) have huge mental barriers unplugging their relatives from life support, in situations when there is 0 chance for any sort of recovery and brain is heavily damaged. Wife is a doctor and most of them are religious freaks, ie italian where we live (nothing against you guys, apart from this). They let their closest people suffer horribly (within the limits of their state) for months or even years, put a massive financial burden on whole society just because they don't feel like signing papers for unplugging already dead person, its just some parts of their body is sort of kept alive. Absolutely deplorable weak 'humans', I have no nice word for those. Suffice to say wife saw her share of such folks during her years in hospitals and it was one of the reasons she moved to private sphere.
Would you consider a chimera resulting from the fusion of two embryos as two people?
https://en.wikipedia.org/wiki/Chimera_(genetics)
That’s a different argument though, because this scenario is specifically about weighing one’s life versus a different person’s lifestyle.
I'm not doing any such thing. I'm just answering what's in the minds of many ethicists.
Ehh, if you actually look up what a 16 week fetus looks like and is capable of you wouldn’t say that. It has eyes, ears, hands that open and close. Basically an avocado-sized baby.
I love animals, I love people, I love dancing Down-syndrome people.
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.
> Many ethicists
Isn't it only just Vegans?
I've heard this expressed as existence versus life. Nobody owes it to to give up their life for the life of another, let alone if all that can be hoped for is the mere existence of another.
I understand where they're coming from, but I believe it comes from a place of local and specific concern (the child with Down's syndrome) and not the wider impact.
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.
It is a sound pragmatic logic (ignoring few corner cases), but people deciding things in such hard situation often don't decide purely on logic, if at all.
> 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.
This is not inherent to Down's syndrome, this is because we live in a society that could easily support people but doesn't.
It's very easy to ask everyone else to support your financial decisions.
It’s also very easy to expect the poor to subsidize your lifestyle by making $7.25/hr. Everything has perspectives.
Aren't you obligated to make sense though? Not just pretend you made a parallel argument?
That's not how subsidization works at all.
Until people like you figure that out, you're going to continue to be sorely disappointed with your political progress, because your "perspective" is not remotely logical.
Financial decisions like renting a place to sleep in safety, or eating.
Because it's a form of eugenics, however far down the spectrum it may be.
edit: I mean to imply here that the overton window is shifted, basically.
Correcting what is essentially a developmental defect (albeit a defect that occurs in the germ cells rather than in the womb) isn't eugenics. It's not caused by any genes carried by the parents, it's caused by a failure in the development process, specifically meiosis. Would preventing fetal alcohol syndrome be eugenics? It's caused by changes in gene expression from alcohol exposure after all.
Are you suggesting that by aborting a fetus with Down Syndrome, the fetus is then cured of Down Syndrome? You’re not really correcting the developmental defect insomuch as eliminating the fetus that had the defect.
The context here is that there's evidence crispr CAS-9 can be used to repair damage to the genome by specifically targeting and deleting the extra third chromosome inside a living cell. I don't know why you'd assume I'm talking about abortion.
people should stop accepting that all forms of eugenics is "bad" - it's become so morally loaded that people like you are afraid to bite the bullet. We should be ok with having discussions about whether avoiding bringing children into the world with greatly reduced quality of life (or even pain-filled existences) is something we should be doing even though it's "eugenics"
I actually think it's reasonable to accept terms as they are if their definition has a long history. If eugenics means a system of forced sterilization intended to unfairly prevent certain people from having kids, (and it has for over half a century) that's fine. I can come up with another term to refer to practices such as embryo screening and we can all agree that eugenics was a very bad thing and would be bad if we tried to bring it back in the future. What I object to is then using a very loaded term outside of that original context to smear people that are making very hard choices, like parents trying to conceive a healthy child
Using a loaded term such as "defect" is exactly eugenics sophistry.
If you want to call it an error, or simply a change, I'm happy to make the argument on those terms. Changes in the development process that leave a child disabled for life, but which can be prevented, such as FAS through alcohol abstinence, spina bifida through folic acid intake, and (if this research can be translated into a treatment) Down Syndrome through the targeted removal of the superfluous chromosome, should be prevented. And don't tell me kids with these conditions aren't disabled, because that dog won't hunt.
None of your arguments fly. Try to think like an programmer--kick the corner case of the arguments. I'm not suggesting anything other than pointing out that most arguments on here have been well trodden by ethicists and even they have no consensus. My personal belief about the specific issue is not even relevant. My objection is the low quality of argument (by several commenters) demonstrating a kind of prejudiced take, I find that the most offensive.
Here you moved from defect to disabled. I don't have to personally say that a group are/aren't disabled, to yet again point out your argument rests on an assumed definition otherwise yet another form of word loading. This is a really basic critical thinking skills example independent of the topic.
Is "birth defect" a eugenically-charged word? I've never heard it used in such a manner, just as a matter of fact.
don't seriously engage with people who would rather morally grandstand and tone police than have important conversations
Stating something is sophistry is not tone policing. Pointless to explain this to those who lack critical thinking skills in the first place. Rather, it is you who are doing the policing from a self-assured conservativism so common to the HN crowd, it is time someone pointed this out. There's no good faith engagement under such a context.
There's a huge range of chromosomal anomalies. You don't see the vast majority of them because the pregnancy self terminates. It's something the human body is already doing.
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.
It's not eugenics, because Down syndrome is not inherited. There is no Down's genes to eliminate. Terminating down syndrome babies doesn't reduce the rate of Down syndrom in the next generation, and nobody is doing it for that goal.
Down syndrome can totally be inherited. If a mother has Down syndrome, the risk of passing the genetic condition onto their future children is 35% to 50%.
Only a few percent of Down’s syndrome cases result from Robertson translocations and may be inherited.
If the mother carries the translocation, the rate of recurrence isn’t much more than 10%. If it’s the father, it’s significantly less.
The main evil of WW2 eugenics was preventing certain people from having children based on arbitrary rules.
Aborting a fetus with trisomia so that the couple can try again for a healthy child is nothing like that.
It's no less arbitrary than deciding that gypsies, who engage in petty crime and mistreat their children, forcing them to become beggars and thieves themselves, should not reproduce. If anything, Down kids probably bring more good to society than gypsy kids. And forced sterilization is arguably more ethical than forced abortion. Same things goes for alcoholics and drug users. Privately, most people agree with this position. The idea that eugenics is inherently bad is very unsound and doesn't withstand scrutiny.
Can't agree here. Regarding gypsies it boils down to the culture and rates of stunting, as evidenced by families who broke off the former and prevented the latter.
The way people with trisomia function in society is also a product of our nurturing culture. It's only recently, when such people started living longer lives thanks to advances in medical science, that their intellectual development gained more attention and it was revealed that they can actually be more independent than commonly believed.
That being said it all requires a huge amount of effort and if a person with trisomia has siblings, they're very likely to be deprived of attention. Additionally, if they're a first child, they're the only one due to this. That is what makes it a net negative.
> if they're a first child, they're the only one due to this
Are you saying people don't have more kids after having a first kid with Trisomy 21?
Dating apps and services with a beauty/salary standard and long prison sentences for the worst criminals are also a form of eugenics. Many kinds of societal and political changes have a eugenic or dysgenic effect on the population, and I'd prefer to live in a society that has more eugenic policies.
People in privileged or powerful positions often would.
People have an aversion to the word "eugenics" because it's often connected to atrocity propaganda from World War II.
I'm not suggesting that every country should have genetic purity tests and policies on the level of Israel, just that we should understand that policies affect what kinds of people are more likely to be produced.
What policies post World War II have had eugenic effects on the population?
The policy forced sterilization of indigenous people that went on from the postwar period up until the start of the 21st century is an excellent example.
No they aren't, because they're not directed at anyone in particular.
When you consider with which woman to conceive children, consciously or unconsciously, you are engaging in eugenics. It’s fine. Forced sterilizations aren’t but we’re not talking about those.
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.
I don't disagree, but this doesn't change general opinion on the topic. People don't like discussing the idea that we should just delete anyone not up to standard.
A 3 month old fetus is not a person and therefore doesn't count under "anyone"
That's a bit arbitrary though, isn't it? I mean, are newborn babies really people? The Romans didn't think so. I don't see the big philosophical difference. They can't earn money or pay taxes, and are 100% dependent on parental care and resources.
And how about sleeping people? I mean they're unaware of their surroundings. Are sleeping people real people? Sure, they'll inevitably wake up in a few hours, if nothing goes wrong. Same as how a fetus will inevitably develop into an adult and be fully conscious, if nothing goes wrong.
> Same as how a fetus will inevitably develop into an adult and be fully conscious, if nothing goes wrong.
Unless it dies in pain and suffering hours, days, months or a few years after birth due to a defect that we already know can never be cured or fixed by other means. Somehow societies that are least interested or capable in providing any aid to these traumatized families revel the most in their suffering.
That's a special case and the same argument / situation can apply to adults too. But only with extreme caution in both cases.
You say that as if that's an accepted fact. Many people agree with what you say. Many disagree.
There's no scientific evidence for what you're saying.
You’re talking about a human person and making the case that the world would be better off if they had never been born.
Yes, that is a legitimate argument to make in a cruel, uncaring (most of the time) world. Lots of regretful parents out there who would take it back if they could. All life is temporary. Quality of life for all involved is a material consideration.
> Yes, that is a legitimate argument to make in a cruel, uncaring (most of the time) world.
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 do feel the same way of my existence being discussed this way. Would anything be different had I not existed? No, besides my brief life experience and interactions I’ve had with other humans not occurring. I wouldn’t have even known I never existed. Is that good or bad? Right or wrong? No, it just is.
> Would anything be different had I not existed? No, besides my brief life experience and interactions I’ve had with other humans not occurring.
“Besides” is doing a lot of work here.
We perhaps disagree about the value of the human experience based on lived experiences.
Yes, very similar to how in the decades after abortion was legalized nationally in the US, it gradually northern to our current state where it is legal to kill your own children any time before they turn 18.
Oh wait, no, that didn't happen, because in both your and my case it turns out humans are able to distinguish between life that is and life that might be. The "step" you mentioned is only a small one in a philosophical sense, enormous otherwise to the point of not being a concern.
> it gradually northern to our current state where it is legal to kill your own children any time before they turn 18.
They’re trying.
https://www.youtube.com/watch?v=GcHzaWyB21A
That video is about abortion. Before birth. So no, they're not trying.
In the video they are discussing the prospect of aborting the pregnancy as the child is being born.
This is a great example because it strengthens the original one I was making; that despite pearl-clutching about what something "could allow", the actual bad thing that they're concerned about never happens. It's just a distraction tactic.
Plenty of states, like Alaska and Oregon, already allow abortion right up to the moment of birth. They don't happen, ever, zero times, except in cases where somebody is going to die otherwise.
The handwringing over "omg they're killing children" actually just kills both children and mothers by making lifesaving procedures illegal. People don't carry unwanted babies to term unless forced to do so.
Thus making it illegal to abort a full-term baby does nothing but score political points, at the expense of the deaths of some mothers who desperately wanted a child and then had some complications.
It's happening in Canada right now. They are pressuring inconvenient individuals to take their lives.
what is your opinion of the state assisting people to survive when their caregivers die? and what of thr caregivers who cannot work, or cannot afford care?
Primary care duties and costs should remain with caregivers except in cases of neglect or deprivation. Additional healthcare burdens (e.g. development psychologists, medication, etc.) should be covered by the state. When caregivers die, the subject is assigned a social worker to ensure his wellbeing. If no other caregiver can be found, he becomes a ward of the state.
Socializing the costs this way has its own ethical problems, especially where the parents continue to reproduce after learning they are carriers; I’ve simply concluded that the costs of care are completely negligible when you contrast them with the loss of human dignity that results from valuing an individual human on the basis of economic cost or contribution.
Yes, I do think you’re being hyperbolic. We’re waging a life that doesn’t exist yet against two parents and possible a healthy child that could be.
Accommodating for a human that exists, if suffering, is clearly a moral obligation. Doing so when it’s not a human but a husk still is not, and deciding in favour of the very human parents—who also have a right to happiness—is definitely ethically valid.
In a related discussion, someone argued that keeping up industrial farming is just, because if we stopped doing so all the cattle that wouldn’t been born would be worse off for never being alive, even if their existence was suffering, because suffering is better than not being at all. I firmly believe this is just wrong. Before a being gains consciousness, it’s not a being and doesn’t experience, hence by avoiding their conception we also avoid unnecessary suffering.
> In a related discussion, someone argued that keeping up industrial farming is just, because if we stopped doing so all the cattle that wouldn’t been born would be worse off for never being alive, even if their existence was suffering, because suffering is better than not being at all. I firmly believe this is just wrong. Before a being gains consciousness, it’s not a being and doesn’t experience, hence by avoiding their conception we also avoid unnecessary suffering.
You bring up an interesting argument, but I think there is some nuance here. I am not arguing that we have an obligation to propagate human life for the sake of propagating human life; I just think there is a risk of devaluing existing human life by claiming it ought not to have existed in the first place.
There are limitations here. e.g. if one is offended at the claim that Down Syndrome is something to be cured, it may be that one is placing too much emphasis on identifying the expression of an individual’s genes with the individual himself (so e.g. eliminating the extra chromosome is not analogous to eliminating the person himself). We wouldn’t do this with a broken bone, but the solution to a broken bone is setting the bone, whereas the “solution” to Down Syndrome has historically been abortion.
So what if one doesn't exist yet and another could be? Then both are possibilities. Your sentences look superifically logical but they make no actual sense.
I'm not sure I get your point. Care to elaborate? In one case, we're talking about assured suffering. In the other, the absence of suffering. Both are hypothetical, but in one case, we know about the outcome. There's obviously a difference here.
When you saying something like "we are talking about assured suffering" it is so unrigorous I cannot even begin to reply. Maybe read some philosophical literature. Or just the 5 w's like in grade school. Who suffers? Why is suffering bad? Why this comparison and not other comparative demarfations? What about second-order social effects? Could that increase suffering in some way? Serious ethicists grapple with these questions because they cannot assume a premise of 20th century nuclear-family hypotheticals (your error) removed from the societal context. And so on.
Why is that bad? When the topic is abortion, not being born is considered a good thing for the child, whose life prospects aren't so good on account of the economic conditions of his mother.
> not being born is considered a good thing for the child
I can’t speak for the parent commenter of course, but this is by no means a universally accepted truth.
I do wonder if the elimination of all genotypes with Down's Syndrome would also result in a significant reduction in beneficial or benign genes.
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?
I'm a bit torn on this. We're all dependent on other people one way or another. Individuals with Downs are more dependent, but it's a spectrum and they can still have meaningful lives. Meanwhile healty "independent" individuals can live entirely tragic and arguably pointless lives devoid of love and filled with anger.
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.
Why do you think people with Down syndrome can’t “achieve independence and a life of their own”? And what makes you think they, or their families, see their existence as suffering?
Most people with Down Syndrome require a huge support network to achieve anything resembling "independence".
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.
> Why do you think people with Down syndrome can’t “achieve independence and a life of their own”?
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.
> 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.
Heartily agree! My question was a reaction to the last line in the parent comment:
> If a child can't achieve independence and a life of their own, why let all parties suffer through that ordeal?
I’m sorry that I didn’t make that as clear as I could have.
* * *
I’ve seen the negativity on Reddit and, now, here. Some of that is based on historical reality: the standards for medical care and early intervention have dramatically improved outcomes for people with DS even just in my lifetime. It turns out that if you don’t believe a child is capable of, say, reading, then you don’t bother teaching them to read. This becomes a self-fulfilling diagnosis. And not too long ago, many kids with DS had inner ear damage from undetected ear infections, leading to hearing loss and difficulty communicating. As we learn more about what’s possible and what needs monitoring in kids with DS, long-term outcomes get better and better.
This recent (~last 20-40 years) improvement means there’s still a visible cohort of people who didn’t receive that level of care and probably are less independent. But I’d also suggest that there’s sample bias in anecdotes on Reddit. Like with product reviews: the vast majority in the middle don’t bother to post, and negative experiences get more emotional traction than positive ones.
The range of associated medical conditions is long and scary. But no individual gets all, or even many, of those conditions. And a lot of the scariest/most complicated stuff is correctable early post-natal (heart surgeries are common) or end of life (early appearance of dementia is unfortunately still the likely outcome for most people with DS). Medicine continues to make progress, and I think outcomes will continue to dramatically improve.
You may not agree with my original point. Raising someone with Down's Syndrome is a high risk venture requiring significant capital (physical therapy, speech therapy, medical interventions and surgeries), a large support network (boots on the ground), and an endowment for continuing care once the original parent is no longer capable. Most people cannot afford to provide this, in which case the experience becomes an ordeal for everyone involved, parent and child. If a parent decides to proceed regardless and forewarned then they are possibly being emotionally selfish and a perhaps would be better suited with a pet rather than a child.
because alot of times when they do it makes the news and because when it does happen.. it usually happens in (very few) "first world countries"?
The government taxes you to pay me to assist these people.
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.
Why didn’t she get screened? She didn’t have to carry to term, she did it to herself.
Does your sister-in-law have family who could support her and the child?
Those sound like capitalism problems, not medical ones, to be probably too honest (HN doesn't generally vibe with class consciousness because so many tech bros sell out or dream of selling out one day, but). Society can afford to have support systems for people with disabilities and their supportive family, as evidenced by the fact that it is currently doing so indirectly (by paying enough for the husband's labor that he can make finances work for the three of them). The fact that the husband in your scenario bears all of that for everyone else (and it creates an unhealthy dependency in their relationship) because we only value the under classes for their contribution of labor is the problem, and is solvable.
Forget the economic aspect of it, what about the emotional and mental cost something like Downs Syndrome imparts, for both parents? I can't imagine any parent hoping they will have a child that will be utterly dependent on them for their entire lives. It's not at all to say they do not love their children as they are, but nobody seeks to become a parent hoping their child will have severe developmental disabilities. While some may choose not to terminate the pregnancy, I think most parents would think twice before conceiving if they knew with reasonable certainty before the fact.
Why do you think that people with Down syndrome are “utterly dependent on [their parents] for their entire lives”? All children come with a severe “emotional and mental cost”, have you seen the world today??
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.
Because I grew up across the street from a forty-year-old woman with it. She will be dependent on her parents for the rest of her life. Still lives there. They make the best of it, but frankly, their lives pretty much suck (though she seems very happy with hers). They are no longer people but first and foremost caregivers. All parents have a stage of that but it’s temporary.
I’d imagine some downs patients have more or less functionality and independence, but seems pretty much the whole distribution is just too low for them to be independent.
If y’all are happy, it’s not really my place to comment on that. But this is one of the things that makes me nervous about having kids in future.
The issue isn’t that like all kids they come with emotional complications and caregiving. The issue is I saw these neighbors spend literally two decades trapped in Groundhog Day. They never progressed past it. Well into retirement and they were stuck in this. I’m not sure if they’ve passed now or where she is, but if they’re still alive, I’d guess they’re still in Groundhog Day. Same thing forever.
Years ago, my uncle worked in a home with a group of people with these sorts of conditions. Many were downs and needed help but families would or couldn’t provide it. It’s not just needing more attention, you have to change the way you live. Like one day, two other guys were taking them on a trip somewhere. On the way back they stop for gas, one guys filling up, the other runs in and grabs a slurpee. One of the downs guys says he wants a slurpee (he’s not supposed to have them for whatever reason.) no, can’t have that. But he wants a slurpee. Repeat ad infinitum. Winds up they’re a block away driving and this guy tries to jump out of the car to run back and get a slurpee. Uncle explained to slurpee guy later you literally can’t get anything without giving it to everyone. It’s like kindergarten logic. You have to live that way. Every day, forever.
I have another reply in this tree talking about outcomes and independence being much worse not even all that long ago. I won’t repeat it all here but it squares with what you observed in an older neighbor growing up.
Also: did they tell you they were miserable or felt stuck in Groundhog Day? If not, then it’s not a safe assumption. AFAIK many caretakers and family members report satisfaction with their lives despite the added complications. (Maybe your neighbors really were miserable, and if so, just know it’s not the norm anymore.)
The early genetic testing for Down syndrome is pretty accurate now. If it’s still a major worry for you about having kids, get the testing done early enough to terminate. I strongly hope that no one terminates out of ignorance about the realities - both positive and negative - of Down syndrome, but have no problem at all with informed choices.
People with Down syndrome aren’t “downs” or “downs patients”, though. It’s easy to dismiss this as language policing or, as another thread hinted at, performative. But the words we use and how we view the world are part of a feedback loop on each other. Synecdoche-izing people as merely a medical diagnosis colors whether society treats them as full members or not. And unlike, say, the Deaf or autism communities, it’s not currently a subculture or something that many people with Down syndrome identify as.
As an internet stranger, I’m asking folks to consider using “person with DS” instead of “DS patient/person/etc”.
I wonder how familiar you are with the reality of a life with DS today. Certainly some children with DS are dependent their entire lives, but others marry, have jobs, support themselves, teach others, etc. And on the whole, both individuals with DS and their family members report higher levels of happiness and satisfaction with their lives than others.
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.
In a better-constructed society, that child isn't dependent upon them alone their entire lives. "It takes a village" isn't just about things like education.
(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).
HN doesn't generally vibe with class consciousness because their high income makes them far more aligned with the "capitalist class" just like how a small business owner is much more aligned with the worker class despite being workers and business owners respectively, since it turns out that people do not value their theoretical "class" since it has no relevance to their life.
No. They want to believe that, but the reality is that even in this little bubble (with a median income multiple times that of general population's median), anyone that works for a living is far more likely to experience homelessness than they are to join economic elites. Sure, you're able to be comfortable because unlike most of the economy you are compensated well, but you should still have worker solidarity (and humility).
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.
[dead]
It is always about exerting control over female bodies. Not rational, but evolutionary residue.
On one hand, parents are making personal choices based on the information available to them... on the other, when nearly an entire population starts selecting against a certain condition, it starts to feel less like individual choice and more like a societal value judgment.
According to a NYT article from 2022, there's a high false positive.
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...
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.
I 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.
My friends baby tested positive for down syndrome in one of the early screenings. They suggested termination. When my friend asked what the chances were they said on that test they had a 1 in 100 chance of down syndrome.
That baby did not have down syndrome and is now a happy seven year old.
We were given 1 in 21 from the nuchal transparency on the 12 week scan, then we did CVS testing to find out for sure.
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.
Wait, am I reading this wrong or did they suggest abortion to avoid a mere 1% risk of Down syndrome?
1% of completely ruining your life and your baby life ?. Not a chance i would take personally.
What is your point, that variance exists? I'm not sure I'd play Russian roulette even with a 100 chamber cylinder. 99 people might come away with an anecdote though.
I agree on the surface. But where do we draw the line of choosing what we think (in our very limited human understanding of future events) is better for a child? Soon it’s GATTACA. As an extreme counter example consider if you could choose the race of a child. Or their melatonin levels. You might think one is “easier” for the child or even “better” for a happy life or something, but then at what point do you have that “right”?
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?
Honestly 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.
I have a cousin with DS. You have to be committed and have the means to raise a child with extreme needs. Many of them will live with their parents their entire lives and will not develop cognitively beyond their tweens (hence the Britney Spears anecdote above). The ones that do move out tend to have to go to a place that specializes in assisting them. They can also have pretty extreme health issues.
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.
The true challenge is what happens after those caregivers pass on.
I think this point would be better made without using the word “extreme” so much. All children bring new challenges; kids with DS often bring more; my child with DS has never, ever been an “extreme” challenge (just like most of the other families with kids with DS we know). There are definitely outliers where the “extreme” applies, but it’s not a helpful way of thinking about DS in general.
From this[1] list of associated complications one can read:
People with Down syndrome are much more likely to die from untreated and unmonitored infections than other people.
Children with Down syndrome are much more likely than other children to develop leukemia
Children with Down syndrome are more likely to have epilepsy [...] Almost half of people with Down syndrome who are older than age 50 have epilepsy.
And from this paper[2]:
Clinical research and longitudinal studies consistently estimate the lifetime risk of dementia in people with Down syndrome to be over 90%. Dementia is rare before the age of 40 years, but its incidence and prevalence exponentially increase thereafter, reaching 88–100% in persons with Down syndrome older than 65 years. [...] In a longitudinal study of adults with Down syndrome, dementia was the proximate cause of death in 70% of cases.
Saying they can have extreme health issues does not seem excessive given the above IMHO.
[1]: https://www.nichd.nih.gov/health/topics/down/conditioninfo/a...
[2]: https://pmc.ncbi.nlm.nih.gov/articles/PMC9387748/
It's interesting about the leukemia one. They're also more likely to survive it than children without Down Syndrome and less likely to get a second cancer.
https://www.ucsf.edu/news/2017/11/408906/survivors-childhood...
Aside from that, it is actually hard to paint an accurate picture of today with historical data for people with Down Syndrome as the childhood Trisomy 21 strategies have improved and been implemented in the past 20-30 years. 60 years ago kids with Trisomy 21 were moved into institutions. Kids 30 years ago got some basic treatments to keep them alive. Now kids get all kinds of screenings for hearing, vision, thyroid, heart conditions before problems develop. Turns out it's very difficult to grow, learn and thrive when your thyroid doesn't work, or your cardiovascular system wasn't circulating enough oxygen.
There are more struggles for sure, including intellectual disabilities, but many more kids are doing significantly better than their past generations. It costs more, is more work, but like the parent poster said, my experience certainly isn't extreme. We go to more doctor's appointments, have IEP meetings, and she's in speech therapy. She's generally been pretty healthy, happy and very active.
It was scary when she was born. We were given a pamphlet with a list of things similar to your first link. The reality though is she's more likely to have those than the general population, but some of those things are very rare. 100x very rare is still rare. Having all of those issues would be even more rare. The greater point though is that any kid can have those issues too.
The epilepsy link seems to conflict with what I've seen. https://pubmed.ncbi.nlm.nih.gov/31391451/ https://www.downs-syndrome.org.uk/about-downs-syndrome/healt...
Both of those put it closer to 10% sometime in their life, with about half of those at birth.
To add to what magicalhippo said about the extremes of medical issues, the extremes of parenting seem appropriate. "Average" parenting follows a trajectory of intense parenting of a newborn, and end at light/no parenting of an adult. For an overwhelming majority of families with kids with DS, the intense parenting requirement last long and more progresses slowly and the trajectory plateaus at around the tween stage, where a significant portion of your day, every day, is dedicated to managing and caring for your child. I would say that spending tens of thousands of additional hours, likely up until your own death, caring for an adult child would count as extreme needs.
As the percentage of adults of ordinary abilities who fail to launch continues to rise, I wonder if we'll stop seeing this as a deficit specific to DS and other intellectual disabilities.
At 2 months, there's still no "someone" to speak of. It's an inch long, with some foundational structures of the nervous system beginning to form.
My 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.
At some point you have to choose an arbitrary line in the sand, or otherwise the universe is a single being.
All lines are arbitrary.
The 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.
You are not talking about the same thing as the person you are replying to.
How does the reasoning behind the choice to end a pregnancy matter? If abortion is acceptable at a given point in pregnancy, the reason behind making the choice shouldn't be "cruel". How would it be any less cruel if it was a healthy pregnancy but the woman was not ready to raise a child?
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
What's better for them should be the overriding concern and that's to have a normal development.
I 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.
It'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.
The 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.
Another 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.
That 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.
This isn't responsive to my comment.
I 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?
It's hard to imagine a treatment cost so low that the USG would pay for it.
Medicaid is 9% of the Federal budget.
Was.
I 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).
> 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...
They (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.
the us government is often driven not by cost/benefit analysis, but by the horror of someone poor getting something without "deserving" it
>Republicans are often driven not by cost/benefit analysis, but by the horror of someone poor getting something without "deserving" it
FTFY
What is “normal development”? And doesn’t that describe the process, not the outcome? If the outcome is happiness, who knows who has it better?!
While "what is normal" is a reasonable question, a normal development is certainly closer to something that allows folks to achieve most things in any career/hobby/pursuit they choose.
Do you really see that as a "norm" being met by a majority of the population today? I don't think most people's lived experience is anything like that.
Normal being closer to what I said than what is usually achievable for folks with extra chromosomes? Yes, I do. I didn’t say it _was_ that anyone can achieve anything.
Normal development starts with having the normal number of chromosomes. I would think this is elementary biology.
I 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.
Such that doesn't see you infertile and dead by 30.
>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-educati...)
Life 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-synd...
* for people who can afford healthcare in the USA
I 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?
Down 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.
The 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?
This 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?
The same, which is why I support universal healthcare and expanding healthcare to include nursing support/housing for the disabled.
If someone gets cancer, then yeah they should be covered such that they aren't made homeless because of their disease.
If someone has a stroke that leaves them unable to work, again a social safety net that keeps them from being homeless should be in place.
The ethics are pretty simple. It's reasonable for a good society to support those in need through force of taxation. Just like it's good for a society to keep the water clean through force of taxation and regulation. Everyone benefits or has the potential to benefit from such a universal system that protects them from circumstances outside their control.
People are giving you shit because Down Syndrome sucks, but being deaf sucks too, and withholding hearing from kids of deaf adults is and was child abuse.
Cochlear implants aren't magical hearing restorers. If they were, you'd be right. But they aren't. There are limitations. Music is especially difficult to perceive properly.
No, that's not why ... it's because the comparison is bogus.
> cochlear implants
Cochlear implants are reversible. A genetic disease is not.
Cochlear implants are not technically reversible, iirc.
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.
There is absolutely no benefit to Down Syndrome.
There is absolutely no benefit to being many things that some humans are.
I know a guy who has down syndrome and he is the happiest guy I've ever met. Any time I see him, even if he doesn't see me, he is smiling and just looks like he loves life. When he sees me, or anybody else he knows, he gets the biggest grin on his face. When you talk to him, you can tell he is such a happy guy with no stress.
If that is not a benefit then I'm not sure what is.
Surveys consistently indicate that people with DS, their family members, and people who know them consider their lives better because of it.
That's a benefit.
Please provide evidence of your claim.
- Parents: https://pmc.ncbi.nlm.nih.gov/articles/PMC3353148/pdf/nihms37...
- People who have DS: https://pmc.ncbi.nlm.nih.gov/articles/PMC3740159/pdf/nihms37...
- Siblings of people with DS: https://doi.org/10.1002/ajmg.c.30101
Most do not have the cognitive abilities for these kinds of philosophical debates.
I used to live near a down syndrome living facility. Essentially a house converted into a care facility in a neighborhood. ~8 - 10 people with downs lived there. Very few visitors (parents), almost all the cars belonged to the nurses. Isolated from everyone they lived around and kept away from the neighbors (I'm sure to the neighbors relief). required constant care. I don't think its a life most would choose.
If you never interacted with the residents there, how are you so sure it was so bad? Nevermind the people in the group home — on what basis did you acquire the belief that the neighbors were “relieved” not to interact with them?
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 was a neighbor... I was friends with the neighbors. I literally lived across the street from the home. I'm sure the nursing staff was nice and they got as great a life as one could have in a group home. I never claimed having downs invalidated anyone's existence, I simply stated that I don't think its a condition anyone would willingly desire if given an alternative.
Also they had an ambulance or fire truck there at least once every couple months.
How long ago was this?
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.
Last year? Its just a house in a residential neighborhood. Neighbors obviously did not want to interact with them very often, limited to a wave if one of them was taking out the trash. The segregation is pretty much desired by the neighbors and understood by the nurses. No one raising a family really wants to have to interact with mentally challenged non family people every day of their lives. Keeping the interaction limited means complaints don't happen.
My experience of interacting with people who have Down’s syndrome is that they are especially outgoing, preternaturally friendly and just generally lovely to be around.
I’m not arguing for either side of the treatment/screening debate here, but vehemently against an apartheid-like view on how people with disabilities should be treated, i.e. not as outcasts but as fellow humans.
I agree, reality is though that they have special needs and for the most part are unable to care for themselves. The people in the home were there because their families were either unable or unwilling to do it.
Reality is that the vast majority of families don’t want a facility in their neighborhood. If downs could be prevented its an overall positive outcome. I wish nothing but happiness for those already affected
As soon as someone starts ascribing towards a "normal" and using the pronoun "them", warning bells should go berserk.
No. Down Syndrome leads to an objectively worse outcome for the affected individuals. And their parents, I might add.
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.
> Down Syndrome leads to an objectively worse outcome for the affected individuals. And their parents, I might add.
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.
It sounds like your situation is anecdotal proof.
What is the objective standard? Subjectively, surveys consistently report that those who have DS and their families consider it a better outcome, so I'd like to know more about the details of an objective standard that ignores or overrides the reporting of those closest to the experience.
> And their parents, I might add.
Down syndrome has nothing to do with parent outcomes. Society refusing to actually provide support is the issue here.
The 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.
I 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.)
“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".
genetics doesn’t care about your feelings. If a human has the genetic issue (issue with cell division on a specific chromosome…i forget which one), they’ll typically have severe developmental challenges in childhood. And if unlucky, end up nonverbal.
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. :)
Any time someone uses the word "normal", I reach for my wallet, to check if it's still there
The heresy of heresies was common sense.
We'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
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.
I'll make another ¯\_(ツ)_/¯
yes, naturally, almost every post I make on my throwaways is something political, in response to existing political comments or submissions, which are evidently allowed.
using throwaways to protect oneself from the terminally online crowd is pretty much a necessity in the current year, unless your values and opinions are firmly in the middle of the Overton window. and even then, there are many opinions that were universally okay 15 years ago can be used against you now. I've seen it happen time and time again.
> in response to existing political comments or submissions, which are evidently allowed
This makes me think that you might not have taken in the essential bit, which is the pattern of an account's behavior. Was that not clear from the above?
In case it helps, the issue is that we don't want accounts to use HN primarily for arguing about politics or ideology. That's an important test and has proven to be one of the more reliable ones, in terms of whether an account is using HN as intended or not (https://hn.algolia.com/?sort=byDate&dateRange=all&type=comme...)
Separately from that, looking at https://news.ycombinator.com/posts?id=123yawaworht456, I see other reasons to ban such an account—you've routinely been breaking HN's rules in plenty of ways which have nothing to do with your specific opinions. If your motivation is simply to protect yourself, as you say here, then I wonder why that would be.
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The 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.
You can have down syndrome and autism at the same time. Down syndrome also puts a person at a higher risk of early onset dementia.
Even if it allows them to function in society, they have significantly higher poverty rates.
It is a hard life for everyone involved.
It can shift your whole perspective if you're open to it
Letting someone have Down’s when it’s avoidable just for the entertainment value is hardly moral.
I don't think they were suggesting this
Down syndrome presents in different ways.
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...
I read the abstract but I'm still a bit confused. Will this help people who have down syndrome? Or is it a way to help future pregnancies?
The realistic reading is that: In the future, a treatment based on this technique could help parents going through IVF rescue more embryos from trisomy-21.
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.
This comment and the original question ought to be pinned to the top of this discussion.
Future pregnancies.
not pregnancies in the traditional sense but IVF, as far as I understand. Many of my friends who are wealthy are doing only IVF to screen for negative genotypes
The haplotype phasing strategy is the key method here. The phasing method is described in a previous paper: https://www.nature.com/articles/s10038-022-01049-6
I’d love to get a Star Trek future, but I’d rather skip the Eugenics War.
Using subtle sequence variants to distinguish and eliminate only the supernumerary chromosome, without harming the normal ones... I think that precision is a technical marvel
This research gives me a bit of hope. Although it’s still early and far from clinical use, it’s encouraging to see new treatment ideas emerging. I really hope we see more progress like this in the future that can truly help patients and their families.
Funded by Japanese taxpayers via 3 grants.
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I think it is worth a separate research that modern definition of progressive thought considers eliminating/treating a genetic malfunction "unethical".
US progressive thought
It's not very long ago that race was considered a "genetic malfunction".
People are still looking for a genetic link to autism.
It is an important point. Our understanding of what is “disease”/“malfunction” and how to address diseases has been changing.
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
This is not an attitude exclusive to progressives. The chief grievance here is that the historical “solution” to the “problem” of Down Syndrome has been abortion. Opposition comes from the pro-life movement (which is generally conservative) and disability advocacy groups (which are generally liberal).
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.
“Fundamentally normalize” is the part that surprises me. I sometimes think that it is the refusal to hold two thoughts simultaneously that drives it.
One can value/respect people with DS and strive to eliminate DS at the same time.
Hailing from a particularly conservative country I can tell you right now that it's not going to satisfy the conservatives, as their core belief is that the world is zero-sum and tampering with that, in their view, wrong.
As a conservative, my position on genetic intervention is about ethics, human digniity, and the sanctity of life and not some kind of blanket opposition to treating genetic disorders.
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.
Ah yes, because conservative thought is such a big fan of gene therapy and abortion.
Both sides have wild distortions, I just feel like it is “more clear” what’s going on in the right.
I don't really understand what it says. As a layman in this topic, I'm curious if modifications like that can cause other effects?
It says that they've developed a way to identify the extra chromosome(s) passed to a child by a malfunctioning germ cell, specifically chromosome 21 though presumably this method could be reproduced for other trisomy diseases. This could, most immediately, lead to a therapy that allows a couple that is going through in vitro fertilization to repair a zygote that has trisomy by correcting the number of chromosomes it has, and preventing the resulting child from having Down's syndrome. This is relevant especially for older mothers, who are most likely to produce malfunctioning eggs that result in Down's syndrome
At that point, wouldn't they just use a different egg? I'd expect that to be far less costly and less risky than this treatment.
Older women may not produce that many eggs, if any at all. And each harvest costs multiple thousands, so it’s not all that clear cut.
Harvesting eggs can be a huge strain both physically, emotionally and financially. And if you're older, and thus have elevated risk, you might get just a one or a few eggs per harvest.
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.
To expand on what notimetorelax said, egg harvesting is a low risk but not a zero risk procedure which involves preparatory hormone injections, twilight sedation, and ultimately sticking a pretty fat needle into the ovaries. There's roughly a 1 in 1000 chance of serious complications for any woman that goes through it. If you're over 40 and your last round of harvesting only produced a handful of eggs cells and all of them with some kind of defect, repairing a damaged egg or zygote would be much less risky for the mother. What exactly the cost of a treatment based upon this discovery would be, I have no idea, but both processes are resource intensive.
> specifically chromosome 21 though presumably this method could be reproduced for other trisomy diseases.
There's no point; other trisomies won't go to term. (Sex chromosomes are an exception, but also don't make the child nonviable.)
Hard to say with 100% certainty without a human trial, but the short answer is "probably not." This is a situation where a person has three copies of chromosome 21 in every cell. Shutting one copy down would, hypothetically, leave someone with two working copies. I don't think we have any reason to believe that trisomy is masking some other phenomenon that we won't see until a fetus with this treatment applied fully develops into a newborn.
(And that's of course assuming human trials were authorized. Probably not for this treatment in my lifetime, at least not in the US).
This is fantastic news!
If I already have down syndrome, would this still work as an adult?
How would that even work, it feels like the body/brain would have to be reshaped?
probably not as a lot of genes are not really used to the extent they were
Maybe if crispr gets really good.
The comments on this here make me a bit scared tbh and shows yet again what a bubble this is. You people need to get out more and socialize with actual people.
No for real, the amount of people desperately trying to work in the fact that they think eugenics is fine
just because something is "eugenics" doesn't mean it's bad or shouldn't be discussed.
No, I think discussing anything that essentially boils down to "some human lifes are not worth it" is not ok, no. There's always the slippery slope to consider. Especially if you're from Germany like me, that's one too far. History, you know.
We also would do good if we'd learn from books like 1984 or brave new world.
interesting.
One person’s “cognitive impairment” is another’s empathy enhancement.
That's a very zero-sum way of looking at this.
It does raise the question about what we lose when the last person with Downs has died out.
Hear me out: what if instead of subtracting one we added another one to even it out?
unfortunally 1. that exists 2. iirc they die
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I have been wondering how culturally conservative societies would use future medical interventions that could shape people’s sexuality. Not necessarily the government requiring expecting mothers to subject the unborn child to some sort of “cure” for gayness. But parents doing this voluntarily and on their own. Even western couples might then be tempted to travel to countries permitting these treatments.
At the same time, it seems unlikely in the near future. It so happens that western societies will not fund this kind of research. And that culturally conservative countries do not have the scientific prowess to conduct research in this regard. Also, their scientists are busy developing nuclear bombs.
it wouldn't, if the implication of you wondering is supposed to be if someone will find and treat a "gay gene". Homosexuality is (like almost all complex traits[1]) influenced by thousands of genes in addition to environmental, social, cultural factors etc.
[1] https://www.quantamagazine.org/omnigenic-model-suggests-that...
> Homosexuality is (like almost all complex traits[1]) influenced by thousands of genes in addition to environmental, social, cultural factors etc.
Homosexuality is also preserved across practically all social animals [1], and–I believe–absolutely all that form monogamous pairs. That isn't true for Down syndrome [2], which manifests much more like a disease.
[1] https://en.wikipedia.org/wiki/Homosexual_behavior_in_animals
[2] https://allthatsinteresting.com/animals-with-down-syndrome
Can we remove the down side but keep the joy?
You can be joyous right now, just remove one self from all the negativity.
I doubt that’s possible. Is it not simply ignorance is bliss?
This will never go to human trial.
They definitely will in China or Russia
Probably not this specific method, no. Even the paper abstract notes that this is stepping-stone research.
Willing to bet money that it will, there's a ton of investment right now in what I'd call blatant eugenics.
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
It'a already possible to test for trisomy in a fetus. There's a newish method (NIPT) that does analysis on maternal blood which has very low risk (it's named non-invasive, but drawing blood is routine but not risk free). Having a treatment, if it's feasible, might be more (or less) paletable than ending the pregnancy when diagnostics indicate likely trisomy.
NIPT is non-invasive compared to amniocentesis
"went out of their way to not mention"
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.
When you're selling customers a big ticket item like that with one side of your mouth, and are failing to mention it to prospective hires, you have to go out of your way to dance around it.
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.
preventing down syndrome is "eugenics"?
Yes, modifying genetics to select for "desirable" traits and remove "undesirable" ones is essentially modern liberal eugenics.
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.
Seems close enough to look like it if you squint a little. As it's more of a genetic error than an inerited trait, maybe not quite the same.
Technically no, but only in the technical sense that makes the idea a little useless.
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.)
Yes.
Genetic conditions are how they make it palatable, meanwhile they're telling race realist parents that selecting for/modifying X, Y, and Z genes will let them raise ubermensch.
prediction markets are your friend
IQ polygenic score companies do exist. Just look at the circle around Jonathan Anomaly and you likely will find them all. I know of a couple that are going to go full open this year.
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.
Does anybody believe IQ/EA PGS companies are a serious thing?
> You have to be of the right genetic origin because of the source data
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?
You’ve got it right.
out of curiosity, what's your stance on abortion? :^)
Personally? Not a fan. But also not a fan of enforcing my opinion on others.
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We detached this comment from https://news.ycombinator.com/item?id=44680817 and marked it off topic.
Comments should get more thoughtful and substantive, not less, as a topic gets more divisive.
https://news.ycombinator.com/newsguidelines.html
> the moral case against acting on same-sex attraction is strong
Explain to me exactly how the moral case against acting on same-sex attraction is strong without using religion (since not all people believe in religion).
You start off with premise that you expect everyone to agree "It's immoral" without explaining why exactly it's immoral.
Without justifying your point how can you expect "liberal spirited" people to discuss with you?
This would only be applicable to in-vitro fertilization, in which case there's no point in trying to remove the extra chromosome when you could just find another sperm donor that doesn't have Down Syndrome.