This is very clever - the X chromosome has a mechanism to shut itself down (which makes sense; otherwise cells in women would have twice as many gene products from the X chromosome as cells from men).
The linked research report[1] uses that mechanism, Xist, to shutdown chromosome 21, the extra chromosome whose presence causes Down syndrome. In its present form, it would need to be optimized for each potential patient and is unlikely to be used as a treatment paradigm, but the biological approach is clever.
> the X chromosome has a mechanism to shut itself down (which makes sense; otherwise cells in women would have twice as many gene products from the X chromosome as cells from men).
You can see this visually because not the same X chromosome is deactivated in all cells: it's what gives calico cats their color (almost all of them are female).
Human women have stripey skin too, but you can't see it under normal light because unlike cats, skin tone in humans is not controlled by the X chromosome.
Can you link to a scientific article? I have severe doubts about that claim made on a random youtube video. In fact, I'd go as far as to claim that the content of the words here, are not correct. This is why I think a doi link to a research paper is necessary. I don't doubt that individual cells are, of course, chimeric, but I doubt the "stripey skin" claim. That one makes zero sense.
I just did a google search and this further confirms my suspicion. Thus I would like to ask for a link to a scientific article - until that happens I remain rather unconvinced.
> Human women have stripey skin too, but you can't see it under normal light because unlike cats, skin tone in humans is not controlled by the X chromosome.
Humans have 'stripey' skin because of somatic mutations, and it's not clear that there are X-chromsome-located skin color loci. Don't believe everything you see on Youtube.
For a more practical example, how does this work for the daughter of a colorblind person (the colorblindness gene is on the X chromosome)? Do they have four types of cones?
Yes, but it's not limited to that case - there's two common variants of the green cone that respond to different wavelengths and people with two X chromosomes can have both, improving colour identification.
And how do they ensure that only one X chromosome is inactivated? All three X chromosomes are, for the most part, equal, neglecting differences between father and mother X chromosome and changes during meiosis.
I have very conflicted feelings about this sort of thing. On the one hand, Down's syndrome can make life very hard, for both the person with it, and their carers and the people around them. I can imagine that some people would have preferred it if they were able to "cure" it. I've often felt in the past that I would have preferred to have been born without autism and ADHD, and while I've been coping a little better with it nowadays, it definitely had a large impact on my childhood, and I know my parents struggled with it a lot.
On the other hand, this feels a bit like eugenics, and a slippery slope towards designer babies where you can pick and choose their attributes. I'm of the opinion that we should embrace the full diversity of human life, and if you can just cut out the parts of your children you don't like, that feels quite iffy to me
Not to downplay your situation, but this is Down's syndrome we're talking about, so a whole menagerie of both physical and mental conditions, including, but not limited to: higher risk of epilepsy and heart failure, aside from almost universal infertility in men.
It's a serious disability even today decreasing life expectancy by 10-15 years.
One may have different opinions regarding the quality of life of these people while they're alive, but I think we can agree that 60 years is a short lifespan for a human.
EDIT: also main point of eugenics, which seems to be not widely understood, was that the state would decide both what kind of children are born and who gets to have them. It was not unheard of to take sufficiently "aryan"-looking newborns from their "inferior race" parents and give them to "master race" adoptive parents.
This lack of agency on part of biological parents is a core tenet of eugenics.
We already live in a world where parents decide whether or not a child with Down Syndrome will be born.
60-90% of prenatal diagnoses in the US result in an elective termination. The number is nearly 100% in Iceland and some other Nordic countries. Unlike autism or ADHD, we have a very clear understanding of exactly what causes Down Syndrome and now potentially how to correct it. A treatment like this is no different from correcting a congenital heart defect - it gives a baby a chance at normal, healthy development.
Ok, that just leaves us with another quandary: deciding whether to terminate the pregnancy (hoping that the parents will get a "normal" child on the next try), or let the child be born and use this (no doubt very expensive) therapy to cure it? Not sure medical insurers would cover it? Maybe Christian anti-abortion groups will donate money for this therapy to parents who choose to have a child with Down syndrome? OTOH, they might consider that interfering with God's will to have an impaired child be born?
> it gives a baby a chance at normal, healthy development.
And a chance of not being killed in utero. Abortion for Down is sad, because despite cognitive impairment and health complications, their lifespans are long, and emotional development is quite spared by the syndrome. They can be very affectionate and sociable, despite the impairment. Abortion for them feels like death penalty for being dumb.
I don't think that this is about being "dumb", but rather about being able to support oneself.
Becoming a parent and taking on the responsibility to support a child financially and emotionally for 18 years as you gradually prepare them for independent life is already a massively difficult decision, particularly when looking at the worldwide decline in birth rates. Expecting people to knowingly and ahead of time take on responsibility for a child who most likely will never be able to support themselves and a raise their own family seems really unreasonable to me.
Ignore commenters trashing you. It is very ok to have conflicted feelings about something like this. I think this is a good thing but understand where you're coming from. Let me tell you my family's story.
I have a brother with developmental disabilities. Not Down Syndrome, but something similar. He (and I) were lucky enough to be born into an upper-middle class family where my brother went to a school where people were kind to him and where services were available. Despite everything going about as well as it could, it still is a major tax on my family. Constant fund-raising for the home he's living in. Major medical problems through out his life. Things like that. When I agreed to kids with my wife it was on the condition that we do genetic testing and abort the fetus if there was an issue.
My mother has invested her life into this child and loves him more than anything. One day we were talking about death and I casually said something along the lines of "as long as I don't see you at <brother's name> funeral" I'll be ok. Implying she should die first so she doesn't have to deal with the sadness of seeing him die. She then said that she wanted my brother to die first. I was stunned. I asked why. She said she wanted to know he was taken care of. It completely floored me. People with Down's (and similar disabilities) can bring so much joy into this world. They can live very happy lives. I understand how it can be hard for people who don't have my experience to feel like you're feeling. However, I wouldn't wish it on anyone. And I think it's a good thing for society to stop babies being born that are so disabled they'll never be able to take care of themselves.
Not to downplay, but is it wrong to assume you're self sufficient in daily life? Work a job and pay your bills?
You list your site and have a seemingly lots of professional experience.
Some of these conditions do make life harder, but there's a big difference between high functioning Autism and disabilities that make someone 100% dependent on others.
It's so odd to me that we haven't come up with a term for high functioning autism to separate from low functioning. It's ridiculous to me that a commenter with this background can superficially claim to be suffering from the same disability as a family member I have who has required a caretaker to not die and would probably be totally uninterested or unable to even give an opinion on a complex subject like this.
I cannot recall why Asperger's as a term was dropped or deemed controversial, but this is the equivalent of stolen valor but for mental illness especially when used to justify an argument.
How is it any different than people with obsessive compulsive tendencies claiming they have OCD? There's a huge difference.
> "It's so odd to me that we haven't come up with a term for high functioning autism to separate from low functioning."
If you are interested to learn, autistic people are typically assigned a level of support needs on a scale of 1 to 3. Most people who would once have received a diagnosis of Aspergers now receive the "level 1" designation. Based on your description, your family member is likely "level 3", possibly with comorbidities? I was assigned "level 2".
> "I cannot recall why Asperger's as a term was dropped or deemed controversial"
It was dropped because a number of labels, now all considered to be ASD, were discovered to be different presentations of the same underlying disorder. The divisions break down under scrutiny and the apparent modal jumps disappear when you control for comorbidities and the ability to mask.
> "How is it any different than people with obsessive compulsive tendencies claiming they have OCD? There's a huge difference."
I'm not the other poster, but I'm a different autistic adult to whom your complaints might apply. To answer this question, the difference is that I call myself an autist because I have been diagnosed as autistic, due to meeting the diagnostic criteria of autism.
> "this is the equivalent of stolen valor"
Please go to the equivalent of hell.
Disabled people are allowed to call ourselves by the correct labels without apologising that our suffering is less severe or less obvious than someone else sharing the same label.
> Disabled people are allowed to call ourselves by the correct labels without apologising that our suffering is less severe or less obvious than someone else sharing the same label.
I think you guys are perhaps talking past each other.
The fact you acknowledge and recognise 'less severe' (a significant understatement when comparing ASD to Downs) suggests that you do understand parent's point.
Parent, I also note, was not seeking or implying an apology was sought from people with less severe genetic conditions. Rather, that the implications on QoL, lifespan, social / familial imposition etc of Downs, is nothing at all like so called high-functioning ASD.
The parent comment was specifically and exclusively talking about autism, not Down's syndrome. I'm addressing their claim that it is "ridiculous" for an autistic person to "claim" to be autistic when other autistic people have worse outcomes.
I'm not interested in litigating the fairly obvious point that Down's syndrome is a much worse prognosis than ASD, and the comment to which I responded says nothing about it either.
Perhaps including milder forms of autism under the term was a useful way to reduce funding for the intensive care and therapy required by those with more severe forms (e.g. the nonverbal), since we can now frame these things as “changing who they are” etc. and not, in fact, necessary.
Many children who primarily have intellectual disabilities will be categorized under the "Autism Spectrum" because funding has been applied for "Autism", and not "vague learning disability". If the doctor checks the Autism box, it opens a huge swath of support networks in certain states.
I don't blame anyone for lumping their kid in. I think it's more of a massive failure for social funding that hyper-categorizes due to means-testing.
Dr. Asperger may or may not have been sorting autistic children into high- and low-functioning groups so that the higher group (with “Asperger’s”) could go on to become good Nazis and the lower group could be euthanized.
But the moral conundrum here is that they can't choose untill well after they're born, meaning the parents are the ones that need to make the decision.
This is one of those situations where the child will likely never get the choice, for the same reasons we don’t require informed consent for being born or getting your diaper changed.
I would to add onto what others have said by mentioning that omission is still a decision. Even if the parents didn't explicitly choose, the inaction comes with dire consequences towards the child, whose parents are responsible (and held accountable) for taking care of.
I understand the concerns, but some things just make life much harder. I would definitely want to spare my child from living with autism, ADHD and certainly Down syndrome, given the choice. It's not like we're talking about choosing eye color, height or gender here.
You got to weigh this against abortions for unborn children diagnosed (maybe even wrongly, the tests are really not that exact) with Down's syndrome. The slippery slope already began a long time ago probably.
By week 20 there is practically no chance you're not going to know if you're carrying a baby with downs or not unless you refuse all the modern screening/tests available.
NIPT tests can be done at week 8 and give a very high indicator that can be followed up with close monitoring/invasive tests at week 14-15 that give a 99% accuracy. That's hardly "are really not that exact".
Per Wikipedia, Down's syndrome currently occurs in ~1 in 1000 live births, and used to occur in 2 in 1000 live births some decades ago, in the USA. That means that a test with a 1% false positive rate (99% accuracy) will lead to a false positive for 98-99 healthy embryos per 1000 live births. I would say that this is fair to call "not all that accurate".
Note: I am not in anyway saying that this means that people shouldn't trust the tests, or anything like that. Just reminding everyone that a test's accuracy has to be compared to the incidence of the disease to decide if it's high or not.
Screening ‘test’ vs diagnostic ‘test’ is an important concept.
Screening tests are designed for sensitivity — false positives are expected and identify who would benefit from additional diagnostic tool and procedures.
Of course gene editing has the potential to go very wrong, and will almost certainly go very wrong. But trisomy 31 is a well defined genetic defect with heavy consequences on the person having it and his or her entourage and there is no ethics preventing to correct the issue even if the technology used can be also used for nefarious means. It would be like not using dynamite for freeing miners in a collapsing mine because in the future there will be bombs made from dynamite targeting children.
What would be the difference between curing a fetus versus a newborn? Isn't editing out the bad gene better than just aborting gestation? For the person gestating too, since going through an abortion is psychologically damaging
Natural Selection might as well be called Natural Eugenics.
I have people in my family with Downs. It made the early pregnancies for every one of my children a terrifying ordeal. Luckily my children were all born perfectly healthy.
I love my family members with it, but their lives have been so much more difficult than they needed to be. It’s not just massively difficult for the disabled, it financially ruined their parents and their care is also a massive tax burden on the community.
If we can eliminate a crippling disease by “just” turning off a gene we should absolutely do it. The alternative is aborting them as soon as it is detected, and even then it isn’t always caught in-utero.
I have worked with people will all sorts of disabilities my entire life. I can confidently say that if I asked any of my blind or deaf colleagues that if they could take a simple gene therapy so they could see/hear again that they would do it without hesitation. Why would Down Syndrome be any different?
I can’t think of a single valid argument against it other than “eugenics bad”. We aren’t talking about Nazi-era human experimentation here.
As I said in another comment, eugenics is state authoritarian control of reproduction and fertility (with the extreme version being genocide).
There are very few people with a disability who wouldn’t want it to have been prevented or cured. “A healthy man has many dreams. A sick man has only one.”
> On the other hand, this feels a bit like eugenics, and a slippery slope towards designer babies where you can pick and choose their attributes.
We can discuss pros and cons of freedom of choice of genetics for your children (an opposite spin on the same idea as calling it "designer babies"), but eugenics is a thought-terminating cliche at this point. There's whole space of useful genetics-based treatments and interventions that do not imply involuntary sterilization of people one group deems lesser.
The best thing to do with the term eugenics is to define it specifically as authoritarian control of reproduction.
Voluntary acts aren’t eugenics, otherwise you get absurd things like free choice of mates being eugenics because you are choosing, or any medical treatment being eugenics if it touches genetics or reproduction. Eugenics should be defined as meaning only authoritarian (directly or via state backed “social engineering”) forms.
While I agree with you that it's a thought-terminating cliche, I would caution that humans have historically been very inaccurate with knowing what traits specifically are good vs. bad, while also very strong on enforcement of ingroup/outgroup and purity dynamics.
We could all be hyper-muscular (from that Myostatin gene) and have tetra-chromatic vision*, but that leads to the joke about how "in the future there will be three genders: kpop, furry, and tank", where kpop represents normative beauty standards, furry represents self-expression, and tank represents hyper-optimising for niche goals like being strong.
On the more near-term impacts, before we're ready for me to get turned into an anthro-wolf, if we all end up with our genomes subject to regular updates like our software currently is, some of us are inevitably going to face our cells getting bricked while we're still made of them.
I've always thought we should maintain a list of people like you. Every time we cure something, like blindness in one person, one of you gets picked and your eyes get poked out. That way the total amount of suffering will be conserved, but those who think that's necessary get to be the ones who pay the price for their beliefs.
In the first half of my comment, I explained that I don't think people should suffer. I'm just also aware that if everyone can pick their child's attributes, it could lead to a nation of blond-hair, blue-eyes kids
No it wouldn't. If these traits were everywhere, then they would no longer be exclusive and therefore would lose their appeal. There is nothing inherently "hot" or "attractive" about blond hair or blue eyes.
I'm sorry but if elimination of crippling disease sounds like eugenics to you, then you should deeply think about your moral compass. Comparing autism (I guess some mild form since you put it next to ADHD) and ADHD to Down's syndrome shows that you are completely clueless. I'm sorry for the harsh tone but your comment is absolutely awful and has zero empathy towards people (and their caretakers) suffering from condition much worse than what you are going through.
For where this gets complex, you can look at the Deaf community.
Crippling disease? Or normal variation in humanity? There's significant debate, and a lot of Deaf people really bristle at the idea of eliminating their identity.
After skimming through, one obvious question follows:
How can they ensure that (only) one out of three chromosomes only, have XIST integrated? (I assume they can target these three chromosomes due to the CRISPR RNA.)
So down syndrome is trisomy 21, aka three chromosomes 21. Say you have to modify a billion cells, just to give a number. Well, how can you ensure that all those have one XIST gene that is also active (otherwise it would be pointless; XIST produces a RNA which in turn silences the X chromosome by coating it)? Inserting new genes is nothing new, that is already ancient technology at this point in time.
If they're going to all that effort to make allele-specific guides why not just cut out the centromere and eliminate the chromosome entirely? This seems like an overly complicated solution.
My understanding is that crispr is less like a scalpel and more like a chainsaw. Great care just be taken to avoid introducing cancer causing mutations.
I wouldn't characterize it like that. It makes mistakes. It's a scalpel in shaky hands. When it works correctly it is very precise but just not 100% reliably.
in vitro there are various techniques where you use crispr on a cell line and then purify it by killing off the cells with errors and only then implant them
in vivo... well there are errors and among other effects are potential cancer
I wondered the same thing and according to Gemini a chromosome is massive vs a few genes. Cutting it out with crispr is possible, but it's too big of a change and would lead to cell death rendering whatever change either useless or kills the host given the possible stage this treatment could be delivered at.
Since the presence of that chromosome causes problems in an organism that functions normally with just two of these chromosomes, the change is actually not that big. And the therapy might also not be intended for adults or even children - most of the developmental impediments have already happened at that stage, and neither cutting out the extra chromosome or silencing it will fix this up.
hgoel 2 minutes ago | parent | context | on: CRISPR takes important step toward silencing Down ...
I chose to call it quality of life because I don't think that simply being happy is enough to have quality of life, but I don't agree that it's about valuing intelligence over happiness.
It's a condition they, and their family, have to live with their entire life. You can't really be permanently sad about a condition you have literally been born with and can't expect to change.
Meanwhile, there are conditions that significantly decrease quality of life even though one's intelligence is unaffected. I think the factor is better described as choice. There are a large number of things a person with Downs just does not have the choice to do differently.
Great achievement. Sometimes I imagine a world where the LLM-money, will and time was funneled into more aggressive CRISPR research and medical advances in general. If I want to go full sci-fi I even imagine cloning.
Cloning isn't even sci-fi or imaginary, just morally questionable and... variably legal (https://en.wikipedia.org/wiki/Human_cloning#Legal_status_of_...). Same goes for gene editing / designer babies / eugenics, which overlaps strongly with the subjects in this discussion.
Let's not conflate eugenics with gene editing or "designer babies." On the contrary, there is little overlap between eugenics and any of the three other topics, but for the vaguest vernacular sense.
> It would be interesting to understand what people with down syndrome feel about this.
Would it?
> Would they all want what makes them unique turned off?
Having a disability doesn't make you unique, it makes you disabled. There is a difference.
> 99% of people with Down syndrome were happy with their lives; 97% liked who they are; 96% liked how they looked; 99% expressed love for their families; 97% liked their brothers and sisters; 86% felt they could make friends easily.
Survey their parents, who are almost certainly their full-time caregivers, if they are "happy their child has Down syndrome."
If the kinds survive long enough to outlive their parents as many do now, ask them again how happy they are once their home life transitions into an institutional one.
Yeah thats why all new expecting parents (here in Switzerland at least) have blood checks for exactly this and there is a reason its done before crossing the legal limit for abortion.
Respect to every single parent who does their best for their kids, but raising kids these days in western society is very hard and taxing even in best case scenario.
> Most people with down syndrome live happy, fulfilling lives.
Correction: the people with Down Syndrome who are capable of meaningfully responding to the question answered a certain way on one survey. Down's affects different people differently. There are plenty of people who don't have the mental facilities to understand the question, let alone respond.
I've seen this kind of argument with autism, too. People here on HN will point out that they were diagnosed with autism and still have rich, meaningful lives. I don't doubt that for one moment! Still, my family lived next to a family with a profoundly autistic, nonverbal kid, and their lives were hard. The parents are lovely people but they were at their wits' end dealing with the consequences of his condition. When people talk about nebulous things like "a cure for autism", they don't mean a way to help the HN folks who have jobs and friends and families. They're talking about my next door neighbor who liked to take off his pants and run around naked outside.
I imagine it's the same here. There's the occasional news story about someone with Down Syndrome graduating college and getting married. They're doing fine. It'd still be nice to find a way to help those who'd never be able to make it to kindergarten.
I have a kiddo with (very likely genetically and behaviourally, but not yet diagnosed by a psych) adhd. He runs us ragged. Love the bugger to death but he is a handful.
We had him at a McDonalds playground the other day, and a nonverbal autistic kid came in escorted by a parent. He immediately got overstimulated and screamed. And ran out.
He started doing laps of the McDonalds. Every time he would pass the play area, his parents would gently guide him towards it, then he would bugger off out the front door again.
He did like 12 laps with his father, 12 laps with his grandfather, then 12 laps with his mother, and eventually he came back to the playground and goofed off a bit with his father again. I could clearly see they were drilled on this behaviour and used to take turns minding him.
They very clearly love their son. But they really don't deserve to have a kid more than 1000 times more difficult than I can even imagine. Like even shifting that kids range a bit so that he could tolerate more play time, and do less laps of the building would help everyone involved. He wouldn't be losing some valuable element of his identity for that to happen.
Whereas my kid might have trouble paying attention to the boring bits in school and want to run around a lot. I am not pining for a cure. We might medicate if it becomes an issue. Its hardly worth talking about in comparison.
I agree. I have two friends with light autism that does not impact their mental faculties (the old Asperger's) and they have happy lives because they are different enough to be interesting. Work, family, hobbies, everything.
You push this difference a bit more and it becomes hell. For them and for the others.
It's fantastic that we've reached a point where Down syndrome isn't a rather imminent death sentence, and that people are able to live fulfilling lives despite their disability.
But it's still a profound disability that leads to health complications that necessitate significant medical interventions to achieve a lifespan that's still reduced by ~10 years. Only about a third of the afflicted can live by themselves.
It could be true because their surrounding/family... would take care better of them than the average person, that I might understand, but still, it's really a stretch.
can you really say you're happy with something when you don't know what life without it looks like? You adapt. You make peace with it. That's human nature. Doesn't mean it's the best option.
People with legs are objectively superior to people born without legs. This doesn't imply those without have no value but it would be pretty silly to deliberately bring people into the world without legs if you could easily prevent or fix the problem
I'm pretty sure abnormally low levels of neuroticism is a symptom of Downs syndrome. Not a doctor but I've interacted with several. The only neurotypical people who are that happy are Buddhist monks.
Additionally, it should set off alarms that the argument implies we should give people Down Syndrome.
Using it to argue against helping people with Down syndrome is worse.
The authors spell out why its wrong. [1] Their sample was exclusively from DS nonprofit mailing lists, got a 17% response rate, with a median household income of $100K, (2x median), and as they wrote, the results are likely "a positive overrepresentation" because people with severe problems are least likely to participate.
On top of that, decades of research [2][3][4] document that people with intellectual disabilities disproportionately answer "yes" to whatever you ask them, and this survey had "Yes" as the first option on every scale. If you take the number at face value, people with DS are the happiest demographic ever measured, crushing the OECD average of ~67% [5].
Using happiness to argue against helping people is wrong because it papers over what Down syndrome actually is, a physical ailment. About half of people with DS have congenital heart defects. Alzheimer's incidence exceeds 90%. Life expectancy is around 60 [6][7][8].
And the suffering isn't contained to the individual. My sister was disabled. It consumed my family. Research confirms this isn't unusual: parents of children with DS show significantly elevated stress [9], siblings become caregivers young [10]. A self-reported happiness survey doesn't capture any of that. It's not the whole picture. It's the one corner of the picture that's easy to look at.
I completely hear your point. We have a close neighbour with a kid with a mental disability which causes her to mentally stay forever 6 years old. She is a happy person but we do see the effects on the parents and sibling and how much care and love they spend. They do it willingly and lovingly, but it still takes a toll. Would they choose differently? I don’t know. But as a parent if I had the chance up front to cure/fix/prevent expression of Down syndrome, I would take it.
Wow, thanks for taking the time to share all this data with such clear points. Much appreciated, especially the personal anecdote to make all this be less academic.
I read their comment, flashback to years of growing up, trying to salvage an unsalvageable situation, and my now non-existent family all came rushing in at once. I saw red, almost posted the one sentence putdown version....glad I took a step back and data-fied it. Learned a bit myself, and I really appreciate you said this. Don't have words for why. Cheers.
It can be so frustrating to read these takes about stuff like DS or Autism - and so tempting to just respond in anger. I'm glad you took a step back too.
You might consider posting that all as a top-level comment. It's very important context.
I mentioned in another comment here that I lived next to a family dealing with a challenging situation. They have my infinite respect for doing their best with a life-altering condition. I saw, and know, how hard it was for them, but they pressed on. Well, same for you and yours. Thanks for doing what you can.
If I told you I put a chemical into the water supply that gave people brown hair you’d probably think I am weird and stupid but not evil.
If I told you the chemical gave people down syndrome you’d probably think I am evil.
Whenever these topics come up there’s always people saying things like “but what if people like it?” And I can’t help but wonder, really? Are we really having this conversation? The answers are obvious so why pretend they’re not?
>I don’t believe anybody actually thinks this way.
Oh, there are far too many people that do. I mostly call them the "Hell for you, heaven for me" bunch, the doublethink/cognitive dissonance in so many is very very strong.
I think this is a deeply flawed interpretation of the original commenter's post. They are suggesting that we think very carefully about imposing our standards of what constitutes a "good" person on the unborn. I don't see the problem, honestly.
If you force something major and permanent on somebody without their consent for no good reason, of course it would be evil. It would be evil to force somebody gay to be straight and it would be evil to force somebody straight to be gay, that has nothing to do with the goodness or badness of being straight or gay. Hair dye is temporary.
All of the arguments in this thread seem to be treating this research's outcome as deleting a person, and applying a corresponding moral judgement thereto. But it is not!
I personally find that choosing to not have a child with Down Syndrome by engineering away the possibility in advance is no worse than choosing not to have a child at all, and better than aborting a viable but affected fetus, because no life is ended. I am not a murderer for choosing not to have any child at all because I feel that my genes should not be imposed on another generation, and I am not a Nazi for saying that if I had a child, I would take any available humane steps to ensure it received the best subset of genetic material from the set available to it. I would, in fact, argue that leaving the creation of a whole person who will have to experience life for 80 years to a series of genetic coin flips is morally reprehensible. Just because we've always done it that way doesn't make it desirable or humane. I welcome this development.
All analogies are flawed and I think you’re taking the wrong message here.
If doctors gave mothers a vaccine that prevented down syndrome, at a high level, that would be the same as putting an anti-down syndrome drug in the water supply.
The point of the example is not about whether putting things in the water supply is good or bad.
I think it's a valid argument to say that people with down syndrome are much happier than those without. Most of them need a society (or at least multiple other people) without that trait to survive, though.
I had the exact same reaction as you but vitriolic, had to take a step back and treat it like a research exercise (in another reply)
Re: "but they're happy" x obviously ridiculous, it hit me 10 minutes in, if we're going off 99% happy, it's absolutely absurd - then the conclusion is we should give everyone down's syndrome.
My initial snap reaction was it must be trolling. But it can't be, if you're looking to stir the pot you don't do it on the 6 comment non-technical post on the second page.
Which kinda makes it more disturbing, to me, because it goes beyond someone not understanding. It's some sort of weird active misunderstanding, like, seeing fun heart-warming Downs syndrome sibling videos on social media is enough for one to assume it's net-good, somehow.
The answers are not obvious. Arguably, putting anything into the water supply is seriously ethically questionable, whether it changes only your hair color or lowers your IQ or raises it, for that matter. People have the right to accept or deny medical treatment. For treatment which occurs before birth clearly they cannot do that, but if you were meditating upon whether to apply a procedure or not, and you had adults who could understand the question and to whom the procedure would have been applied, taking their opinions into consideration on the subject is entirely valid.
You think of a person with Downs' as less than a person without it, clearly. But why should your opinion matter? If we accept treating Downs' in utero, should we accept genetic treatments to lower criminality? What about independent thinking? What about other "inconvenient" personality traits. Like why not allow some "authority" to eliminate any "negative" trait they wish from the population?
Obviously these are extremes and your position that considering the question with respect to Downs' leads to a straightforward conclusion: on balance, it make sense, but I think we should approach any question about modifying people with serious consideration.
They have a significant reduced live span and are far away from the normal population. They also can't reproduce (at least woman, only with very high risk).
Most people don't want to be unique, they want to be a part of the rest of the herde.
Its objectivly better to not have down syndrom.
And before i get downvoted: My stand doesn't mean i look down on peole with down syndrom. These two viewpoints are not exclusive. The same for the decision to abort a fetus with down syndrom doesn't mean that someone decided this, would look down on people with down syndrom.
> 99% of people with Down syndrome were happy with their lives;
I don't believe this number for a second, but let's just assume it's true. Why does that matter? We know from an abundance of research about both the Disability Paradox and that specifically people with intellectual disabilities which are common comorbidities with Down's Syndrome express elevated levels of happiness compared to the general population in part because they lack the necessary faculties to understand their situation. "Ignorance is bliss."
Arguing against a cure that could happen shortly after birth for a debilitating disability on the basis of people reporting high levels of happiness is patently absurd.
Sure, but given the choice to not have down syndrome, I'm sure they will choose it. Were they given the choice? Not as a hypothetical. But in front of their eyes.
As of now, the overwhelming majority of future parents who learn that their baby is going to suffer from Downs decide to abort it. So 99 per cent of would-be Downs may not get to comment on their enjoyment of life at all.
IIRC there are countries and years without a single Down syndrome sufferer born alive. An effective treatment for the condition could change these stats.
A similar statistic applies to many disabilities. If you give people a few years of time, after they acquired a disability, studies show their happiness isn't substantially different from a person without a disability. Grief comes from lack of accessibility and society failing to support us. But not from the actual situation. I have to explain this every other week, to a non-disabled person that tries to tell me how bad my life must be. Its a well known phenomenon. And a total break of boundaries. Imagine someone walking up to a woman and tellign her they are sorry for her being born as a woman? Not imaginable. But happens with people with disabilities all the time.
This sounds a bit like you dislike the lack of understanding, which itself is based on lack of understanding.
On the other hand I agree that commenting on ones disability is a break of boundaries in most contexts.
One should quite often avoid to comment on traits in general that are irrelevant for the context or the conversation.
It is not about understanding, it is about not even trying to and just telling a complete stranger how you think they have it bad. That is, as you identified, a break of boundaries. And, frankly, if someone breaks into your house, you are not obligated to "understand" them. You just know they are shitty humans.
You got downvoted because people fail to see from both sides. The people outside of course would compare and say this is the worse outcome, fix it no matter what, but once the person already have it, from their perspective, what do they think about it? Do they also compare, but maybe they cannot make that decision clearly, but it's also their choice so there is room to debate.
If there is no real downside to it, its not even a debate.
People with down syndrom have an avg iq from 50-60 which means that our society do not see them as independent human beings who are allowed to make all decisions themselves.
Also people with down syndrom do have reduced life expectency. In 1960 it was 10 now its at 60 (heart issues).
I would say that this actually does something remarkable to the statistic. Every child born with Down Syndrome must be highly valued and wanted, and their parents are likely to be strongly pro-life and invested in their human dignity. Any child who was likely to be considered a burden or troublesome, simply didn't make it.
So, you end up with a self-selecting population where the children really have been formed with an optimistic outlook on life, and their parents really did foster environments where they can live happily, and be nurtured despite the disability and obstacles that come up.
It is very nearly a talking point in favor of abortion: that if these babies are truly wanted and loved, they are not being born into a life of abuse, neglect, or disadvantage, which would be a risk for the ones who never made it at all.
I am slightly reminded of Gattaca, the story of which is that certain people are discriminated based on their DNA. Society is built, in general, excluding certain people due to their disabilities. Whether or not a blind person can find meaning or enjoy life has road blocks but is not impossible. Science can provide technologies to potentially improve people's lives -- cochlear implants for those with hearing loss, for example. There are ongoing philosophical discussions of whether or not these technologies and scientific discoveries are actually harming or helping those with these disabilities and the broader discussion of 'normalizing' society at large (I don't want to use the term eugenics).
Recognizing that certain mutations very blatantly reduce a person's quality of life and making it possible to revert those mutations does not require treating the people who have not had those mutations reverted as lesser.
Thinking of them as lesser leads to a society that prefers to drag each other down instead of lifting each other up.
I had a uncle with Down syndrome. He was the sweetest and funniest person, we remember him every day more than 10 years after he passed away. Down syndrome carries a lot of physical health problems like heart or lung diseases which make their life very painful. He suffered from lung problems since he was 18 until he passed away at 49, living in a lot of pain and being a big burden to my mum and my grandma, who took care of him. Still, it's true, he never lost his smile and love her sister and mother back as much as it's possible, giving all of us who lived with him a lot of joy.
I am very conflicted with these kind of issues, but I think I am of the opinion that it's better to prevent this suffering, but once they're already here we should make their life as easier as possible.
I chose to call it quality of life because I don't think that simply being happy is enough to have quality of life, but I don't agree that it's about valuing intelligence over happiness.
It's a condition they, and their family, have to live with their entire life. You can't really be permanently sad about a condition you have literally been born with and can't expect to change.
Meanwhile, there are conditions that significantly decrease quality of life even though one's intelligence is unaffected. I think the factor is better described as choice. There are a large number of things a person with Downs just does not have the choice to do differently.
I know that I'm in the small minority of people that read Flowers for Algernon and didn't think the ending was a sad one. His life was interrupted with some brief magic and resolved into what it was always meant to be.
People have gotten emotional with me about my take on that, and that's just fiction. I guess my point is I don't think there is a clear morality play here. This is more like a trolley problem where you have to decide for yourself how much control you're comfortable with.
This is incorrect in that the term was not neutral before WW2 nor was Nazi Germany Eugenics really unique. Taking these claims one at a time:
>the term was value neutral.
By the late 1930s the academic community had largely moved on from eugenics, the catholic church denounced it 1930 with their Casti Connubii, the Eugenics Office Records closing in 1935 and finally Laughlin retiring in 1939. (The leading Eugenicist)In 1930s being a Eugenics was viewed much like homeopathy is viewed today.
>Until a certain Austrian painter decided to practice eugenics in a uniquely negative way,
Eugenics in the united states saw the rise of the "Moron Laws" and mass sterilization of marginalized communities in the US. In fact, Nazi Germany's Eugenics policies were largely inspired by US Eugenic legislation and actively promoted by US Eugenicist. (Particularly California) Heck mass sterilization programs in the US didn't even die with WW2 continuing into mid 1970s.
I'm troubled by this thread because the vibe I'm getting is Eugenics was only bad because the science wasn't there yet and the Nazi's did it, this time will be different. No, the aspect which made eugenics dangerous were inherently political and every bit as relevant today than they were a hundred years ago. (Who decides which traits should be "edited" out? What traits should be "edited" in? What policies should be legislated? Who is primarily impacted by these policies? How much agency do the people impacted by these policy have in the situation?)
This is very clever - the X chromosome has a mechanism to shut itself down (which makes sense; otherwise cells in women would have twice as many gene products from the X chromosome as cells from men).
The linked research report[1] uses that mechanism, Xist, to shutdown chromosome 21, the extra chromosome whose presence causes Down syndrome. In its present form, it would need to be optimized for each potential patient and is unlikely to be used as a treatment paradigm, but the biological approach is clever.
[1] https://www.pnas.org/doi/10.1073/pnas.2517953123
> the X chromosome has a mechanism to shut itself down (which makes sense; otherwise cells in women would have twice as many gene products from the X chromosome as cells from men).
You can see this visually because not the same X chromosome is deactivated in all cells: it's what gives calico cats their color (almost all of them are female).
Human women have stripey skin too, but you can't see it under normal light because unlike cats, skin tone in humans is not controlled by the X chromosome.
https://www.youtube.com/watch?v=BD6h-wDj7bw&t=225s
Can you link to a scientific article? I have severe doubts about that claim made on a random youtube video. In fact, I'd go as far as to claim that the content of the words here, are not correct. This is why I think a doi link to a research paper is necessary. I don't doubt that individual cells are, of course, chimeric, but I doubt the "stripey skin" claim. That one makes zero sense.
I just did a google search and this further confirms my suspicion. Thus I would like to ask for a link to a scientific article - until that happens I remain rather unconvinced.
I agree about the need for verification, but Veritasium videos are usually well-researched and more accurate than "random" videos.
Here's one link:
https://www.sciencedirect.com/science/article/abs/pii/S07380...
https://link.springer.com/article/10.1007/BF00273442
I haven’t read it but I did find this
> Human women have stripey skin too, but you can't see it under normal light because unlike cats, skin tone in humans is not controlled by the X chromosome.
Humans have 'stripey' skin because of somatic mutations, and it's not clear that there are X-chromsome-located skin color loci. Don't believe everything you see on Youtube.
That video seems to imply you can't see it under any light and the image there is pure visualization.
AFAIR this comes up visually when infected with certain diseases.
For a more practical example, how does this work for the daughter of a colorblind person (the colorblindness gene is on the X chromosome)? Do they have four types of cones?
Yes, but it's not limited to that case - there's two common variants of the green cone that respond to different wavelengths and people with two X chromosomes can have both, improving colour identification.
How does it feel to actually answer a question as a geneticist?...
> How does it feel to actually answer a question as a geneticist?...
Genetics is complicated.
If you really want to learn about this, all you need to do is search.
https://www.bbc.com/future/article/20140905-the-women-with-s...
Likewise humans with heterochromatic eyes are generally women.
> Likewise humans with heterochromatic eyes are generally women.
I haven't heard of this - where is this published? Here's a primer on eye color:
https://www.ncbi.nlm.nih.gov/books/NBK574499/
I was misremembering, it's actually cats where hetrochromatic eyes is associated with females. In humans there isn't any difference.
And how do they ensure that only one X chromosome is inactivated? All three X chromosomes are, for the most part, equal, neglecting differences between father and mother X chromosome and changes during meiosis.
Presumably by targeting them toward these differences.
I have very conflicted feelings about this sort of thing. On the one hand, Down's syndrome can make life very hard, for both the person with it, and their carers and the people around them. I can imagine that some people would have preferred it if they were able to "cure" it. I've often felt in the past that I would have preferred to have been born without autism and ADHD, and while I've been coping a little better with it nowadays, it definitely had a large impact on my childhood, and I know my parents struggled with it a lot.
On the other hand, this feels a bit like eugenics, and a slippery slope towards designer babies where you can pick and choose their attributes. I'm of the opinion that we should embrace the full diversity of human life, and if you can just cut out the parts of your children you don't like, that feels quite iffy to me
Not to downplay your situation, but this is Down's syndrome we're talking about, so a whole menagerie of both physical and mental conditions, including, but not limited to: higher risk of epilepsy and heart failure, aside from almost universal infertility in men.
It's a serious disability even today decreasing life expectancy by 10-15 years.
One may have different opinions regarding the quality of life of these people while they're alive, but I think we can agree that 60 years is a short lifespan for a human.
EDIT: also main point of eugenics, which seems to be not widely understood, was that the state would decide both what kind of children are born and who gets to have them. It was not unheard of to take sufficiently "aryan"-looking newborns from their "inferior race" parents and give them to "master race" adoptive parents.
This lack of agency on part of biological parents is a core tenet of eugenics.
We already live in a world where parents decide whether or not a child with Down Syndrome will be born.
60-90% of prenatal diagnoses in the US result in an elective termination. The number is nearly 100% in Iceland and some other Nordic countries. Unlike autism or ADHD, we have a very clear understanding of exactly what causes Down Syndrome and now potentially how to correct it. A treatment like this is no different from correcting a congenital heart defect - it gives a baby a chance at normal, healthy development.
Ok, that just leaves us with another quandary: deciding whether to terminate the pregnancy (hoping that the parents will get a "normal" child on the next try), or let the child be born and use this (no doubt very expensive) therapy to cure it? Not sure medical insurers would cover it? Maybe Christian anti-abortion groups will donate money for this therapy to parents who choose to have a child with Down syndrome? OTOH, they might consider that interfering with God's will to have an impaired child be born?
> it gives a baby a chance at normal, healthy development.
And a chance of not being killed in utero. Abortion for Down is sad, because despite cognitive impairment and health complications, their lifespans are long, and emotional development is quite spared by the syndrome. They can be very affectionate and sociable, despite the impairment. Abortion for them feels like death penalty for being dumb.
I don't think that this is about being "dumb", but rather about being able to support oneself.
Becoming a parent and taking on the responsibility to support a child financially and emotionally for 18 years as you gradually prepare them for independent life is already a massively difficult decision, particularly when looking at the worldwide decline in birth rates. Expecting people to knowingly and ahead of time take on responsibility for a child who most likely will never be able to support themselves and a raise their own family seems really unreasonable to me.
Ignore commenters trashing you. It is very ok to have conflicted feelings about something like this. I think this is a good thing but understand where you're coming from. Let me tell you my family's story.
I have a brother with developmental disabilities. Not Down Syndrome, but something similar. He (and I) were lucky enough to be born into an upper-middle class family where my brother went to a school where people were kind to him and where services were available. Despite everything going about as well as it could, it still is a major tax on my family. Constant fund-raising for the home he's living in. Major medical problems through out his life. Things like that. When I agreed to kids with my wife it was on the condition that we do genetic testing and abort the fetus if there was an issue.
My mother has invested her life into this child and loves him more than anything. One day we were talking about death and I casually said something along the lines of "as long as I don't see you at <brother's name> funeral" I'll be ok. Implying she should die first so she doesn't have to deal with the sadness of seeing him die. She then said that she wanted my brother to die first. I was stunned. I asked why. She said she wanted to know he was taken care of. It completely floored me. People with Down's (and similar disabilities) can bring so much joy into this world. They can live very happy lives. I understand how it can be hard for people who don't have my experience to feel like you're feeling. However, I wouldn't wish it on anyone. And I think it's a good thing for society to stop babies being born that are so disabled they'll never be able to take care of themselves.
Just my two cents.
The full diversity of life sounds wonderful, as long as you're not the one suffering painful, disfiguring or crippling conditions.
I am the one suffering from multiple of those conditions
Not to downplay, but is it wrong to assume you're self sufficient in daily life? Work a job and pay your bills?
You list your site and have a seemingly lots of professional experience.
Some of these conditions do make life harder, but there's a big difference between high functioning Autism and disabilities that make someone 100% dependent on others.
It's so odd to me that we haven't come up with a term for high functioning autism to separate from low functioning. It's ridiculous to me that a commenter with this background can superficially claim to be suffering from the same disability as a family member I have who has required a caretaker to not die and would probably be totally uninterested or unable to even give an opinion on a complex subject like this.
I cannot recall why Asperger's as a term was dropped or deemed controversial, but this is the equivalent of stolen valor but for mental illness especially when used to justify an argument.
How is it any different than people with obsessive compulsive tendencies claiming they have OCD? There's a huge difference.
> "It's so odd to me that we haven't come up with a term for high functioning autism to separate from low functioning."
If you are interested to learn, autistic people are typically assigned a level of support needs on a scale of 1 to 3. Most people who would once have received a diagnosis of Aspergers now receive the "level 1" designation. Based on your description, your family member is likely "level 3", possibly with comorbidities? I was assigned "level 2".
> "I cannot recall why Asperger's as a term was dropped or deemed controversial"
It was dropped because a number of labels, now all considered to be ASD, were discovered to be different presentations of the same underlying disorder. The divisions break down under scrutiny and the apparent modal jumps disappear when you control for comorbidities and the ability to mask.
> "How is it any different than people with obsessive compulsive tendencies claiming they have OCD? There's a huge difference."
I'm not the other poster, but I'm a different autistic adult to whom your complaints might apply. To answer this question, the difference is that I call myself an autist because I have been diagnosed as autistic, due to meeting the diagnostic criteria of autism.
> "this is the equivalent of stolen valor"
Please go to the equivalent of hell.
Disabled people are allowed to call ourselves by the correct labels without apologising that our suffering is less severe or less obvious than someone else sharing the same label.
> Please go to the equivalent of hell.
> Disabled people are allowed to call ourselves by the correct labels without apologising that our suffering is less severe or less obvious than someone else sharing the same label.
I think you guys are perhaps talking past each other.
The fact you acknowledge and recognise 'less severe' (a significant understatement when comparing ASD to Downs) suggests that you do understand parent's point.
Parent, I also note, was not seeking or implying an apology was sought from people with less severe genetic conditions. Rather, that the implications on QoL, lifespan, social / familial imposition etc of Downs, is nothing at all like so called high-functioning ASD.
The parent comment was specifically and exclusively talking about autism, not Down's syndrome. I'm addressing their claim that it is "ridiculous" for an autistic person to "claim" to be autistic when other autistic people have worse outcomes.
I'm not interested in litigating the fairly obvious point that Down's syndrome is a much worse prognosis than ASD, and the comment to which I responded says nothing about it either.
Perhaps including milder forms of autism under the term was a useful way to reduce funding for the intensive care and therapy required by those with more severe forms (e.g. the nonverbal), since we can now frame these things as “changing who they are” etc. and not, in fact, necessary.
Many children who primarily have intellectual disabilities will be categorized under the "Autism Spectrum" because funding has been applied for "Autism", and not "vague learning disability". If the doctor checks the Autism box, it opens a huge swath of support networks in certain states.
I don't blame anyone for lumping their kid in. I think it's more of a massive failure for social funding that hyper-categorizes due to means-testing.
Dr. Asperger may or may not have been sorting autistic children into high- and low-functioning groups so that the higher group (with “Asperger’s”) could go on to become good Nazis and the lower group could be euthanized.
https://en.wikipedia.org/wiki/Hans_Asperger
I'm sorry to hear that. So would you like others to suffer from them as well if given the choice?
If they had the choice to not suffer, and they wanted to take it, then I think it's their decision to make, and not anyone else's
But the moral conundrum here is that they can't choose untill well after they're born, meaning the parents are the ones that need to make the decision.
This is one of those situations where the child will likely never get the choice, for the same reasons we don’t require informed consent for being born or getting your diaper changed.
By the time they can make it, it’s too late.
I would to add onto what others have said by mentioning that omission is still a decision. Even if the parents didn't explicitly choose, the inaction comes with dire consequences towards the child, whose parents are responsible (and held accountable) for taking care of.
I understand the concerns, but some things just make life much harder. I would definitely want to spare my child from living with autism, ADHD and certainly Down syndrome, given the choice. It's not like we're talking about choosing eye color, height or gender here.
You got to weigh this against abortions for unborn children diagnosed (maybe even wrongly, the tests are really not that exact) with Down's syndrome. The slippery slope already began a long time ago probably.
By week 20 there is practically no chance you're not going to know if you're carrying a baby with downs or not unless you refuse all the modern screening/tests available.
NIPT tests can be done at week 8 and give a very high indicator that can be followed up with close monitoring/invasive tests at week 14-15 that give a 99% accuracy. That's hardly "are really not that exact".
Per Wikipedia, Down's syndrome currently occurs in ~1 in 1000 live births, and used to occur in 2 in 1000 live births some decades ago, in the USA. That means that a test with a 1% false positive rate (99% accuracy) will lead to a false positive for 98-99 healthy embryos per 1000 live births. I would say that this is fair to call "not all that accurate".
Note: I am not in anyway saying that this means that people shouldn't trust the tests, or anything like that. Just reminding everyone that a test's accuracy has to be compared to the incidence of the disease to decide if it's high or not.
> lead to a false positive for 98-99 healthy embryos per 1000 live births.
The number you’re looking for is 9, not 99
Oops... Off by one [order of magnitude]...
Screening ‘test’ vs diagnostic ‘test’ is an important concept.
Screening tests are designed for sensitivity — false positives are expected and identify who would benefit from additional diagnostic tool and procedures.
Of course gene editing has the potential to go very wrong, and will almost certainly go very wrong. But trisomy 31 is a well defined genetic defect with heavy consequences on the person having it and his or her entourage and there is no ethics preventing to correct the issue even if the technology used can be also used for nefarious means. It would be like not using dynamite for freeing miners in a collapsing mine because in the future there will be bombs made from dynamite targeting children.
What would be the difference between curing a fetus versus a newborn? Isn't editing out the bad gene better than just aborting gestation? For the person gestating too, since going through an abortion is psychologically damaging
Natural Selection might as well be called Natural Eugenics.
I have people in my family with Downs. It made the early pregnancies for every one of my children a terrifying ordeal. Luckily my children were all born perfectly healthy.
I love my family members with it, but their lives have been so much more difficult than they needed to be. It’s not just massively difficult for the disabled, it financially ruined their parents and their care is also a massive tax burden on the community.
If we can eliminate a crippling disease by “just” turning off a gene we should absolutely do it. The alternative is aborting them as soon as it is detected, and even then it isn’t always caught in-utero.
I have worked with people will all sorts of disabilities my entire life. I can confidently say that if I asked any of my blind or deaf colleagues that if they could take a simple gene therapy so they could see/hear again that they would do it without hesitation. Why would Down Syndrome be any different?
I can’t think of a single valid argument against it other than “eugenics bad”. We aren’t talking about Nazi-era human experimentation here.
As I said in another comment, eugenics is state authoritarian control of reproduction and fertility (with the extreme version being genocide).
There are very few people with a disability who wouldn’t want it to have been prevented or cured. “A healthy man has many dreams. A sick man has only one.”
> “A healthy man has many dreams. A sick man has only one.”
I'm partially blind, and I know many fully blind people. None of us have being sighted as our one dream.
Maybe not a “dream” but if you could essentially take a shot and have your version back, wouldn’t you?
I only need to wear glasses but I’d do it in a heartbeat.
> On the other hand, this feels a bit like eugenics, and a slippery slope towards designer babies where you can pick and choose their attributes.
We can discuss pros and cons of freedom of choice of genetics for your children (an opposite spin on the same idea as calling it "designer babies"), but eugenics is a thought-terminating cliche at this point. There's whole space of useful genetics-based treatments and interventions that do not imply involuntary sterilization of people one group deems lesser.
The best thing to do with the term eugenics is to define it specifically as authoritarian control of reproduction.
Voluntary acts aren’t eugenics, otherwise you get absurd things like free choice of mates being eugenics because you are choosing, or any medical treatment being eugenics if it touches genetics or reproduction. Eugenics should be defined as meaning only authoritarian (directly or via state backed “social engineering”) forms.
While I agree with you that it's a thought-terminating cliche, I would caution that humans have historically been very inaccurate with knowing what traits specifically are good vs. bad, while also very strong on enforcement of ingroup/outgroup and purity dynamics.
We could all be hyper-muscular (from that Myostatin gene) and have tetra-chromatic vision*, but that leads to the joke about how "in the future there will be three genders: kpop, furry, and tank", where kpop represents normative beauty standards, furry represents self-expression, and tank represents hyper-optimising for niche goals like being strong.
On the more near-term impacts, before we're ready for me to get turned into an anthro-wolf, if we all end up with our genomes subject to regular updates like our software currently is, some of us are inevitably going to face our cells getting bricked while we're still made of them.
* I don't know how that works so here's the wikipedia page: https://en.wikipedia.org/wiki/Tetrachromacy#Humans
I've always thought we should maintain a list of people like you. Every time we cure something, like blindness in one person, one of you gets picked and your eyes get poked out. That way the total amount of suffering will be conserved, but those who think that's necessary get to be the ones who pay the price for their beliefs.
In the first half of my comment, I explained that I don't think people should suffer. I'm just also aware that if everyone can pick their child's attributes, it could lead to a nation of blond-hair, blue-eyes kids
No it wouldn't. If these traits were everywhere, then they would no longer be exclusive and therefore would lose their appeal. There is nothing inherently "hot" or "attractive" about blond hair or blue eyes.
Would you pick blond hair, blue eyes for your kids? Would black people pick it? Asian?
I wouldn't, but I can imagine a lot of people would
If you wouldn’t, why would a big chunk of the population do it? And if they did it, so what? Why is blonde and blue eyes bad?
Btw, I also wouldn’t if I could choose.
Congratulations, you just won the trophy for most privileged comment on the web!
I'm sorry but if elimination of crippling disease sounds like eugenics to you, then you should deeply think about your moral compass. Comparing autism (I guess some mild form since you put it next to ADHD) and ADHD to Down's syndrome shows that you are completely clueless. I'm sorry for the harsh tone but your comment is absolutely awful and has zero empathy towards people (and their caretakers) suffering from condition much worse than what you are going through.
For where this gets complex, you can look at the Deaf community.
Crippling disease? Or normal variation in humanity? There's significant debate, and a lot of Deaf people really bristle at the idea of eliminating their identity.
I think autism (mild one) is not a bad area for this discussion either. But Down's syndrome? Absolutely not.
I tend to agree, but like autism, Downs varies in severity.
That we permit (and widely practice) pregnancy termination makes it an easier call for me, though.
What are you talking about? WHAT are you talking about?
After skimming through, one obvious question follows:
How can they ensure that (only) one out of three chromosomes only, have XIST integrated? (I assume they can target these three chromosomes due to the CRISPR RNA.)
So down syndrome is trisomy 21, aka three chromosomes 21. Say you have to modify a billion cells, just to give a number. Well, how can you ensure that all those have one XIST gene that is also active (otherwise it would be pointless; XIST produces a RNA which in turn silences the X chromosome by coating it)? Inserting new genes is nothing new, that is already ancient technology at this point in time.
https://en.wikipedia.org/wiki/XIST
If they're going to all that effort to make allele-specific guides why not just cut out the centromere and eliminate the chromosome entirely? This seems like an overly complicated solution.
My understanding is that crispr is less like a scalpel and more like a chainsaw. Great care just be taken to avoid introducing cancer causing mutations.
I wouldn't characterize it like that. It makes mistakes. It's a scalpel in shaky hands. When it works correctly it is very precise but just not 100% reliably.
in vitro there are various techniques where you use crispr on a cell line and then purify it by killing off the cells with errors and only then implant them
in vivo... well there are errors and among other effects are potential cancer
But this has the same problem as before - how can you ensure that only one X-chromosome is killed off? Or at the least one?
I wondered the same thing and according to Gemini a chromosome is massive vs a few genes. Cutting it out with crispr is possible, but it's too big of a change and would lead to cell death rendering whatever change either useless or kills the host given the possible stage this treatment could be delivered at.
Since the presence of that chromosome causes problems in an organism that functions normally with just two of these chromosomes, the change is actually not that big. And the therapy might also not be intended for adults or even children - most of the developmental impediments have already happened at that stage, and neither cutting out the extra chromosome or silencing it will fix this up.
Now ask Gemini what chromosomal anomaly causes Downs. It will likely be enlightening.
hgoel 2 minutes ago | parent | context | on: CRISPR takes important step toward silencing Down ...
I chose to call it quality of life because I don't think that simply being happy is enough to have quality of life, but I don't agree that it's about valuing intelligence over happiness. It's a condition they, and their family, have to live with their entire life. You can't really be permanently sad about a condition you have literally been born with and can't expect to change.
Meanwhile, there are conditions that significantly decrease quality of life even though one's intelligence is unaffected. I think the factor is better described as choice. There are a large number of things a person with Downs just does not have the choice to do differently.
Great achievement. Sometimes I imagine a world where the LLM-money, will and time was funneled into more aggressive CRISPR research and medical advances in general. If I want to go full sci-fi I even imagine cloning.
Cloning isn't even sci-fi or imaginary, just morally questionable and... variably legal (https://en.wikipedia.org/wiki/Human_cloning#Legal_status_of_...). Same goes for gene editing / designer babies / eugenics, which overlaps strongly with the subjects in this discussion.
Let's not conflate eugenics with gene editing or "designer babies." On the contrary, there is little overlap between eugenics and any of the three other topics, but for the vaguest vernacular sense.
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> It would be interesting to understand what people with down syndrome feel about this.
Would it?
> Would they all want what makes them unique turned off?
Having a disability doesn't make you unique, it makes you disabled. There is a difference.
> 99% of people with Down syndrome were happy with their lives; 97% liked who they are; 96% liked how they looked; 99% expressed love for their families; 97% liked their brothers and sisters; 86% felt they could make friends easily.
Survey their parents, who are almost certainly their full-time caregivers, if they are "happy their child has Down syndrome."
If the kinds survive long enough to outlive their parents as many do now, ask them again how happy they are once their home life transitions into an institutional one.
Yeah thats why all new expecting parents (here in Switzerland at least) have blood checks for exactly this and there is a reason its done before crossing the legal limit for abortion.
Respect to every single parent who does their best for their kids, but raising kids these days in western society is very hard and taxing even in best case scenario.
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> Most people with down syndrome live happy, fulfilling lives.
Correction: the people with Down Syndrome who are capable of meaningfully responding to the question answered a certain way on one survey. Down's affects different people differently. There are plenty of people who don't have the mental facilities to understand the question, let alone respond.
I've seen this kind of argument with autism, too. People here on HN will point out that they were diagnosed with autism and still have rich, meaningful lives. I don't doubt that for one moment! Still, my family lived next to a family with a profoundly autistic, nonverbal kid, and their lives were hard. The parents are lovely people but they were at their wits' end dealing with the consequences of his condition. When people talk about nebulous things like "a cure for autism", they don't mean a way to help the HN folks who have jobs and friends and families. They're talking about my next door neighbor who liked to take off his pants and run around naked outside.
I imagine it's the same here. There's the occasional news story about someone with Down Syndrome graduating college and getting married. They're doing fine. It'd still be nice to find a way to help those who'd never be able to make it to kindergarten.
I have a kiddo with (very likely genetically and behaviourally, but not yet diagnosed by a psych) adhd. He runs us ragged. Love the bugger to death but he is a handful.
We had him at a McDonalds playground the other day, and a nonverbal autistic kid came in escorted by a parent. He immediately got overstimulated and screamed. And ran out.
He started doing laps of the McDonalds. Every time he would pass the play area, his parents would gently guide him towards it, then he would bugger off out the front door again.
He did like 12 laps with his father, 12 laps with his grandfather, then 12 laps with his mother, and eventually he came back to the playground and goofed off a bit with his father again. I could clearly see they were drilled on this behaviour and used to take turns minding him.
They very clearly love their son. But they really don't deserve to have a kid more than 1000 times more difficult than I can even imagine. Like even shifting that kids range a bit so that he could tolerate more play time, and do less laps of the building would help everyone involved. He wouldn't be losing some valuable element of his identity for that to happen.
Whereas my kid might have trouble paying attention to the boring bits in school and want to run around a lot. I am not pining for a cure. We might medicate if it becomes an issue. Its hardly worth talking about in comparison.
I agree. I have two friends with light autism that does not impact their mental faculties (the old Asperger's) and they have happy lives because they are different enough to be interesting. Work, family, hobbies, everything.
You push this difference a bit more and it becomes hell. For them and for the others.
It's fantastic that we've reached a point where Down syndrome isn't a rather imminent death sentence, and that people are able to live fulfilling lives despite their disability.
But it's still a profound disability that leads to health complications that necessitate significant medical interventions to achieve a lifespan that's still reduced by ~10 years. Only about a third of the afflicted can live by themselves.
But it's only possible for them to lead good lives when their parents basically dedicate the rest of their own lives to caring for them, I think?
Individuals have very different abilities and needs. Some are able to drive and work independently while others require ongoing support.
99% doesn't make sense, not even 99% of people without Down syndrome are happy (far from it I believe).
What exactly is logically impossible about people with down syndrome being happier on average than those without it?
It could be true because their surrounding/family... would take care better of them than the average person, that I might understand, but still, it's really a stretch.
can you really say you're happy with something when you don't know what life without it looks like? You adapt. You make peace with it. That's human nature. Doesn't mean it's the best option.
It would break the feeling of superiority of people without that disability. Fact. So they can't believe it.
People with legs are objectively superior to people born without legs. This doesn't imply those without have no value but it would be pretty silly to deliberately bring people into the world without legs if you could easily prevent or fix the problem
I'm pretty sure abnormally low levels of neuroticism is a symptom of Downs syndrome. Not a doctor but I've interacted with several. The only neurotypical people who are that happy are Buddhist monks.
That 99% number is wrong.
Additionally, it should set off alarms that the argument implies we should give people Down Syndrome.
Using it to argue against helping people with Down syndrome is worse.
The authors spell out why its wrong. [1] Their sample was exclusively from DS nonprofit mailing lists, got a 17% response rate, with a median household income of $100K, (2x median), and as they wrote, the results are likely "a positive overrepresentation" because people with severe problems are least likely to participate.
On top of that, decades of research [2][3][4] document that people with intellectual disabilities disproportionately answer "yes" to whatever you ask them, and this survey had "Yes" as the first option on every scale. If you take the number at face value, people with DS are the happiest demographic ever measured, crushing the OECD average of ~67% [5].
Using happiness to argue against helping people is wrong because it papers over what Down syndrome actually is, a physical ailment. About half of people with DS have congenital heart defects. Alzheimer's incidence exceeds 90%. Life expectancy is around 60 [6][7][8].
And the suffering isn't contained to the individual. My sister was disabled. It consumed my family. Research confirms this isn't unusual: parents of children with DS show significantly elevated stress [9], siblings become caregivers young [10]. A self-reported happiness survey doesn't capture any of that. It's not the whole picture. It's the one corner of the picture that's easy to look at.
[1] https://pmc.ncbi.nlm.nih.gov/articles/PMC3740159/ ; [2] https://pubmed.ncbi.nlm.nih.gov/7231176/ ; [3] https://www.researchgate.net/publication/11551964 ; [4] https://pmc.ncbi.nlm.nih.gov/articles/PMC3044819/ ; [5] https://www.oecd.org/en/publications/society-at-a-glance-202... ; [6] https://pmc.ncbi.nlm.nih.gov/articles/PMC12812862/; [7] https://www.nia.nih.gov/health/alzheimers-causes-and-risk-fa... ; [8] https://www.cdc.gov/birth-defects/living-with-down-syndrome/... ; [9] https://pmc.ncbi.nlm.nih.gov/articles/PMC8911183/ ; [10] https://journals.sagepub.com/doi/10.1177/10848223211027861
I completely hear your point. We have a close neighbour with a kid with a mental disability which causes her to mentally stay forever 6 years old. She is a happy person but we do see the effects on the parents and sibling and how much care and love they spend. They do it willingly and lovingly, but it still takes a toll. Would they choose differently? I don’t know. But as a parent if I had the chance up front to cure/fix/prevent expression of Down syndrome, I would take it.
Wow, thanks for taking the time to share all this data with such clear points. Much appreciated, especially the personal anecdote to make all this be less academic.
I read their comment, flashback to years of growing up, trying to salvage an unsalvageable situation, and my now non-existent family all came rushing in at once. I saw red, almost posted the one sentence putdown version....glad I took a step back and data-fied it. Learned a bit myself, and I really appreciate you said this. Don't have words for why. Cheers.
It can be so frustrating to read these takes about stuff like DS or Autism - and so tempting to just respond in anger. I'm glad you took a step back too.
You might consider posting that all as a top-level comment. It's very important context.
So sorry for what you had to go through
I mentioned in another comment here that I lived next to a family dealing with a challenging situation. They have my infinite respect for doing their best with a life-altering condition. I saw, and know, how hard it was for them, but they pressed on. Well, same for you and yours. Thanks for doing what you can.
This is a well written response, thank you.
If I told you I put a chemical into the water supply that gave people brown hair you’d probably think I am weird and stupid but not evil.
If I told you the chemical gave people down syndrome you’d probably think I am evil.
Whenever these topics come up there’s always people saying things like “but what if people like it?” And I can’t help but wonder, really? Are we really having this conversation? The answers are obvious so why pretend they’re not?
I don’t believe anybody actually thinks this way.
>I don’t believe anybody actually thinks this way.
Oh, there are far too many people that do. I mostly call them the "Hell for you, heaven for me" bunch, the doublethink/cognitive dissonance in so many is very very strong.
https://joycearthur.com/abortion/the-only-moral-abortion-is-...
“The Only Moral Abortion is My Abortion” is a common example of this behavior.
I think this is a deeply flawed interpretation of the original commenter's post. They are suggesting that we think very carefully about imposing our standards of what constitutes a "good" person on the unborn. I don't see the problem, honestly.
If humanity had the ability to think very carefully then the world would be a much different place.
The number one rule of thinking about the unborn would be thinking about those who are living first.
If you force something major and permanent on somebody without their consent for no good reason, of course it would be evil. It would be evil to force somebody gay to be straight and it would be evil to force somebody straight to be gay, that has nothing to do with the goodness or badness of being straight or gay. Hair dye is temporary.
All of the arguments in this thread seem to be treating this research's outcome as deleting a person, and applying a corresponding moral judgement thereto. But it is not! I personally find that choosing to not have a child with Down Syndrome by engineering away the possibility in advance is no worse than choosing not to have a child at all, and better than aborting a viable but affected fetus, because no life is ended. I am not a murderer for choosing not to have any child at all because I feel that my genes should not be imposed on another generation, and I am not a Nazi for saying that if I had a child, I would take any available humane steps to ensure it received the best subset of genetic material from the set available to it. I would, in fact, argue that leaving the creation of a whole person who will have to experience life for 80 years to a series of genetic coin flips is morally reprehensible. Just because we've always done it that way doesn't make it desirable or humane. I welcome this development.
All analogies are flawed and I think you’re taking the wrong message here.
If doctors gave mothers a vaccine that prevented down syndrome, at a high level, that would be the same as putting an anti-down syndrome drug in the water supply.
The point of the example is not about whether putting things in the water supply is good or bad.
I think it's a valid argument to say that people with down syndrome are much happier than those without. Most of them need a society (or at least multiple other people) without that trait to survive, though.
This post is about curing down syndrome though.
Saying “but they’re happy” in this context is implying that we shouldn’t try to cure it, which is obviously ridiculous.
I had the exact same reaction as you but vitriolic, had to take a step back and treat it like a research exercise (in another reply)
Re: "but they're happy" x obviously ridiculous, it hit me 10 minutes in, if we're going off 99% happy, it's absolutely absurd - then the conclusion is we should give everyone down's syndrome.
My initial snap reaction was it must be trolling. But it can't be, if you're looking to stir the pot you don't do it on the 6 comment non-technical post on the second page.
Which kinda makes it more disturbing, to me, because it goes beyond someone not understanding. It's some sort of weird active misunderstanding, like, seeing fun heart-warming Downs syndrome sibling videos on social media is enough for one to assume it's net-good, somehow.
The answers are not obvious. Arguably, putting anything into the water supply is seriously ethically questionable, whether it changes only your hair color or lowers your IQ or raises it, for that matter. People have the right to accept or deny medical treatment. For treatment which occurs before birth clearly they cannot do that, but if you were meditating upon whether to apply a procedure or not, and you had adults who could understand the question and to whom the procedure would have been applied, taking their opinions into consideration on the subject is entirely valid.
You think of a person with Downs' as less than a person without it, clearly. But why should your opinion matter? If we accept treating Downs' in utero, should we accept genetic treatments to lower criminality? What about independent thinking? What about other "inconvenient" personality traits. Like why not allow some "authority" to eliminate any "negative" trait they wish from the population?
Obviously these are extremes and your position that considering the question with respect to Downs' leads to a straightforward conclusion: on balance, it make sense, but I think we should approach any question about modifying people with serious consideration.
Kind of a strange example, because yeah I do think it’s evil to inflict your aesthetic preference on everyone’s bodies without consent.
So there’s no difference at all? Making everybody have brown hair is the same as giving everyone down syndrome?
They have a significant reduced live span and are far away from the normal population. They also can't reproduce (at least woman, only with very high risk).
Most people don't want to be unique, they want to be a part of the rest of the herde.
Its objectivly better to not have down syndrom.
And before i get downvoted: My stand doesn't mean i look down on peole with down syndrom. These two viewpoints are not exclusive. The same for the decision to abort a fetus with down syndrom doesn't mean that someone decided this, would look down on people with down syndrom.
> 99% of people with Down syndrome were happy with their lives;
I don't believe this number for a second, but let's just assume it's true. Why does that matter? We know from an abundance of research about both the Disability Paradox and that specifically people with intellectual disabilities which are common comorbidities with Down's Syndrome express elevated levels of happiness compared to the general population in part because they lack the necessary faculties to understand their situation. "Ignorance is bliss."
Arguing against a cure that could happen shortly after birth for a debilitating disability on the basis of people reporting high levels of happiness is patently absurd.
Sure, but given the choice to not have down syndrome, I'm sure they will choose it. Were they given the choice? Not as a hypothetical. But in front of their eyes.
As of now, the overwhelming majority of future parents who learn that their baby is going to suffer from Downs decide to abort it. So 99 per cent of would-be Downs may not get to comment on their enjoyment of life at all.
IIRC there are countries and years without a single Down syndrome sufferer born alive. An effective treatment for the condition could change these stats.
A similar statistic applies to many disabilities. If you give people a few years of time, after they acquired a disability, studies show their happiness isn't substantially different from a person without a disability. Grief comes from lack of accessibility and society failing to support us. But not from the actual situation. I have to explain this every other week, to a non-disabled person that tries to tell me how bad my life must be. Its a well known phenomenon. And a total break of boundaries. Imagine someone walking up to a woman and tellign her they are sorry for her being born as a woman? Not imaginable. But happens with people with disabilities all the time.
This sounds a bit like you dislike the lack of understanding, which itself is based on lack of understanding.
On the other hand I agree that commenting on ones disability is a break of boundaries in most contexts. One should quite often avoid to comment on traits in general that are irrelevant for the context or the conversation.
It is not about understanding, it is about not even trying to and just telling a complete stranger how you think they have it bad. That is, as you identified, a break of boundaries. And, frankly, if someone breaks into your house, you are not obligated to "understand" them. You just know they are shitty humans.
If the problem is lack of support from society, you can always go and live off the grid. No artificial barriers there.
You got downvoted because people fail to see from both sides. The people outside of course would compare and say this is the worse outcome, fix it no matter what, but once the person already have it, from their perspective, what do they think about it? Do they also compare, but maybe they cannot make that decision clearly, but it's also their choice so there is room to debate.
If there is no real downside to it, its not even a debate.
People with down syndrom have an avg iq from 50-60 which means that our society do not see them as independent human beings who are allowed to make all decisions themselves.
Also people with down syndrom do have reduced life expectency. In 1960 it was 10 now its at 60 (heart issues).
> 99% are happy
Unfortunately, that's not entirely accurate.
50-90% of babies with diagnosed Down Syndrome are aborted before having a chance to be born and enjoy their lives. In Iceland, that figure is 100%.
I don't see how this makes the figure any less accurate?
I would say that this actually does something remarkable to the statistic. Every child born with Down Syndrome must be highly valued and wanted, and their parents are likely to be strongly pro-life and invested in their human dignity. Any child who was likely to be considered a burden or troublesome, simply didn't make it.
So, you end up with a self-selecting population where the children really have been formed with an optimistic outlook on life, and their parents really did foster environments where they can live happily, and be nurtured despite the disability and obstacles that come up.
It is very nearly a talking point in favor of abortion: that if these babies are truly wanted and loved, they are not being born into a life of abuse, neglect, or disadvantage, which would be a risk for the ones who never made it at all.
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The "No Response" category might end up being a bit over-sampled.
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This is AI generated
I am slightly reminded of Gattaca, the story of which is that certain people are discriminated based on their DNA. Society is built, in general, excluding certain people due to their disabilities. Whether or not a blind person can find meaning or enjoy life has road blocks but is not impossible. Science can provide technologies to potentially improve people's lives -- cochlear implants for those with hearing loss, for example. There are ongoing philosophical discussions of whether or not these technologies and scientific discoveries are actually harming or helping those with these disabilities and the broader discussion of 'normalizing' society at large (I don't want to use the term eugenics).
There are arguments about various "conditions" being diseases or not, Down Syndrome really isn't one of them.
Recognizing that certain mutations very blatantly reduce a person's quality of life and making it possible to revert those mutations does not require treating the people who have not had those mutations reverted as lesser.
Thinking of them as lesser leads to a society that prefers to drag each other down instead of lifting each other up.
I don't know about this argument because they seem a lot happier than I am.
That's not to say that it's unreasonable to value intelligence over happiness, but framing it as quality of life seems off.
I had a uncle with Down syndrome. He was the sweetest and funniest person, we remember him every day more than 10 years after he passed away. Down syndrome carries a lot of physical health problems like heart or lung diseases which make their life very painful. He suffered from lung problems since he was 18 until he passed away at 49, living in a lot of pain and being a big burden to my mum and my grandma, who took care of him. Still, it's true, he never lost his smile and love her sister and mother back as much as it's possible, giving all of us who lived with him a lot of joy.
I am very conflicted with these kind of issues, but I think I am of the opinion that it's better to prevent this suffering, but once they're already here we should make their life as easier as possible.
I chose to call it quality of life because I don't think that simply being happy is enough to have quality of life, but I don't agree that it's about valuing intelligence over happiness.
It's a condition they, and their family, have to live with their entire life. You can't really be permanently sad about a condition you have literally been born with and can't expect to change.
Meanwhile, there are conditions that significantly decrease quality of life even though one's intelligence is unaffected. I think the factor is better described as choice. There are a large number of things a person with Downs just does not have the choice to do differently.
I know that I'm in the small minority of people that read Flowers for Algernon and didn't think the ending was a sad one. His life was interrupted with some brief magic and resolved into what it was always meant to be.
People have gotten emotional with me about my take on that, and that's just fiction. I guess my point is I don't think there is a clear morality play here. This is more like a trolley problem where you have to decide for yourself how much control you're comfortable with.
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That’s still eugenics, though. Except this time it’s not pseudoscience.
Until a certain Austrian painter decided to practice eugenics in a uniquely negative way, the term was value neutral.
The motor bus was hailed as a eugenic invention because it helped prevent inbreeding in small villages, for instance.
This is incorrect in that the term was not neutral before WW2 nor was Nazi Germany Eugenics really unique. Taking these claims one at a time:
>the term was value neutral.
By the late 1930s the academic community had largely moved on from eugenics, the catholic church denounced it 1930 with their Casti Connubii, the Eugenics Office Records closing in 1935 and finally Laughlin retiring in 1939. (The leading Eugenicist)In 1930s being a Eugenics was viewed much like homeopathy is viewed today.
https://en.wikipedia.org/wiki/Casti_connubii - https://en.wikipedia.org/wiki/Eugenics_in_the_United_States
>Until a certain Austrian painter decided to practice eugenics in a uniquely negative way,
Eugenics in the united states saw the rise of the "Moron Laws" and mass sterilization of marginalized communities in the US. In fact, Nazi Germany's Eugenics policies were largely inspired by US Eugenic legislation and actively promoted by US Eugenicist. (Particularly California) Heck mass sterilization programs in the US didn't even die with WW2 continuing into mid 1970s.
https://en.wikipedia.org/wiki/Nazi_eugenics - https://alexwellerstein.com/publications/wellerstein_stateso...
I'm troubled by this thread because the vibe I'm getting is Eugenics was only bad because the science wasn't there yet and the Nazi's did it, this time will be different. No, the aspect which made eugenics dangerous were inherently political and every bit as relevant today than they were a hundred years ago. (Who decides which traits should be "edited" out? What traits should be "edited" in? What policies should be legislated? Who is primarily impacted by these policies? How much agency do the people impacted by these policy have in the situation?)