I remember this was literally the question posed to us by an ethics professor 20 years ago. Now it’s a reality.
A person with Down’s can live a happy fulfilling life, but most parents would never choose to have a child with Down’s if it could be born ‘normal’ instead. So we’re essentially removing them from the gene pool and human race.
It’s eugenics for sure. I’m not sure if it’s unethical though. It’s pretty complex.
Stopping fetuses from developing Down’s Syndrome in my opinion isn’t unethical because it will genuinely improved their quality of life. They will live longer lives, have fewer health problems, etc. The slippery slope however was pretty well covered in the film Gattica in which people not only start requesting designer children but the world becomes a dystopian utopia where the genetically perfected are unfairly favored as the ruling class while the genetically unmodified become relegated to the worker/slave class.
The one thing you can guarantee of the human race though is we will do it before we really put the thought in to “if” we should do it.
I have ADHD and have 2 boys on the spectrum. Despite the challenges with my younger and higher needs son I don’t know if given the opportunity to play God if I would. As you said it’s an extremely complex question I don’t know if anyone is truly equipped to answer and I’d argue we definitely aren’t mature enough to start playing God.
Personally, I’d much rather have never been born than be as neurodivergent as I am. We all exist without our consent, and I think preventing disabilities and neurodivergence in our children is no more unethical than having children in the first place. I’d never make the decision for people who already exist, I know some people consider it a part of who they are and I wouldn’t want to change that. However, with hypothetical offspring, they aren’t anybody yet. You can’t take away part of a identity that doesn’t exist.
What scares me is the idea that having neurodivergent children could be outlawed. I think neurodivergence does bring a lot of value to humanity as a whole, and while I don’t think there’s anything egreiously unethical about an individual preventing it in their child, the idea that a government could have that much power over how we have children is absolutely fucking terrifying.
This is something I’ve thought a lot about. I hope you appreciate my rambling or at least don’t find me inconvenient to ignore
I do appreciate it and stresses why it’s such a nuanced topic and why I feel we (collective) are not mature enough to make the decision about if we should be playing God.
My 12 year old who is high needs is also the happiest and gentlest boy despite the challenges and when asked he feels he is not different and more importantly, he feels normal.
He also has T1D. I’d much rather we focus CRISPR on solving the problems we currently have than erasing the “inconvenience” of a neurotypical having a kid with autism, ADD or Autism.
My understanding is that women with down syndrome only have a 30-50% chance of fertility, and men are generally infertile. Additionally there are laws in place to prevent those with mental disabilities from being taken advantage of sexually, which lessens the chance of children even more. It’s a spontaneous mutation, so they wouldn’t be removed from the gene pool.
Realistically, gene editing will never be affordable for the vast majority of the world’s population. But today, abortion is chosen up to 93% of the time instead. If the alternative is a live, healthy birth, I can’t see any ethical issues.
they were mostly against termination, but when they introduced screenings, and optional termination. the disease mysteriously disappeared. even though publicly they were against it
(it’s a story I read about it a long time ago, so take it with a grain of sand)
I think what is talking about is like everyone now forced to have blue eyes with gene editing so is it considered a type of soft genocide or something.
Not saying this is what you’re saying, but it’s attitudes like this that make me see red. We gotta stop letting our society become so atomized that we’ve replaced tribalism with Turbo Tribalism.
Groups who are so desperate to maintain a group identity that they think something like a child getting cochlear implants or other actual remedies to handicaps is equivalent to “genocide” against their group. (that’s a thing.)
Everyone is susceptible to this syndrome to some degree, but you see it the most when you see people suggest the possibility of positive change.
Well, deaf people at least have the argument that they do have their own languages and cultures.
Of course they lose that argument when they ignore the fact that they can still teach their children their language and culture even if said children can hear, though, so it isn’t a very good argument, but it is an argument, I guess. 🤷♂️
I’d never heard of it, but after reading about it it looks like basic depressive Hollywood drama slop with some anti-cochlear implants¹ and anti-metal music² propaganda and the usual “learn to be happy with the cards you’re dealt” conformist bullshit³ mixed in, so no thanks, I think I’ll pass, I’m already angry enough without having to suffer through this sort of shit.
1.– Sure, cochlear implants kind of suck when compared to working ears (though maybe not so much when compared to somewhat working ears with tinnitus), but someone born deaf won’t be able to tell the difference, having nothing to compare, and at least they’ll warn you when a car is honking for you to get out of its way (and, frankly, quite often at work I wish I could just unplug my ears and plug in some music, so they’ve got their good sides too).
But we weren’t talking about cochlear implants; we were talking about CRISPR. We were talking about giving deaf people proper working ears. Nah, fuck that. If we can do that we can do better. Give everyone who wants it the ability to hear as well as, say, a dog. I, and lots of people, would pay good money for that.
2.– Seriously, what the fuck. Have we learnt nothing since the eighties satanic panic? American religiosity and so-called morals are a fucking cancer on global culture. Keep that fucking shit to yourselves, if you enjoy wallowing in each other’s misery that much.
3.– Fuck. That. Fuck the cards I’m dealt. I’ll make my own fucking cards. Play them how I want. And if I have to, I’ll make my own fucking game (creative commons licence, of course, in case anyone else is into it).
This isn’t eugenics or close to it, it’s fixing actual problems before someone is born, not choosing who has rights to breed. If they announced a therapy to guarantee a child will grow up immune to corporate propaganda or be able to use their brain in a rational, well-planned and thoughtful way, and have exceptional language skills, we should voluntarily hand the world over to them. Because what’s happening right now is the opposite of that.
Right now capitalism is imposing eugenics on us. The system and the cost of life has created a very real system deciding who can have families. If tools emerged that could guarantee the kids we DO have aren’t subject to the same weaknesses and limitations, we need to capitalize on every advantage we can.
I agree. Eugenics is about harming the rights of the would-be parents. It means telling them, “You have traits we consider undesirable, so we will forcibly prevent you from having any child whatsoever.”
To me, that’s different from parents choosing to avoid having a child with certain traits. Or not having children at all.
If parents decide to cure a disorder in their future child, or decide to abort a pregnancy, nobody is stopping those parents from trying again. The parents themselves have not been deemed undesirable and unworthy to pass on their genes.
You’re definitely right how this without proper regulation could get out of hand with unethical individuals trying to edit genes. I’d say from my non-geneticist perspective the line would be “would editing this gene improve the individual’s quality of life or improve their life expectancy”. Operationalizing"quality of life" is obviously crucial here and can’t be defined socially but medically such as “no debilitating pain”.
I do wonder how things like this will impact existing communities of individuals with disabilities. I’d expect it would probably increase discrimination as it will increase the perception of people with disabilities as being “curable” which isn’t always possible or even desirable.
Yeah this is scary. Down syndrome is definitely in the gray area too where it can be viewed negatively but plenty of people have it and lead fulfilling lives. Wipe cystic fibrosis out of a fetus and all but the most staunch biological purists would agree it was a good thing. Make your fetus white, blonde, and blue eyed and it’s obviously eugenics. I don’t know how I feel about this.
Completely apart from the ethics, I think this technology is really cool though.
They live fulfilling lives at the detriment of others who have to live less fulfilling lives, maybe they don’t see it that way, but its added responsibility
There are a lot of reports and interviews with ppl who have down syndrome that are not happy at all with their situation. Ie. Unable to have a driving licence, go to university, huge disadvantage on the dating market… the list goes on.
I’m not saying they can’t have fulfilling moments but we also shouldn’t kid ourselves and look at down syndrome with rosy eyes. If it could be cured everyone would do it instantly.
Deaf people will decry “fixing” a person hearing impaired in the womb. Yet, it’s a correction to biological normative.
Adjusting a gender to a different one in the womb would not be.
Adjusting physical traits for looks wouldn’t be.
Adjusting a physical trait like spinal deformity would be.
Adjusting for general height would not be.
If there is something diagnosable in the ICD-10 codes we have, and it’s preventable in a population, it would not be eugenetics. Remove gene editing as the tool, but just say “magic” a cure. Cures apply to diseases, not traits.
You don’t cure being black. You CAN cure sickle cell.
I think the line is pretty clear.
You simply use existing diagnostic criteria of deviation from biological normative function.
The diagnostic criteria and the culture that determines that criteria are both subject to change. lots of things that people consider perfectly normal now would be classified as a disease or disorder in the past.
Gattaca is the semi-dystopian vision of our future if we just walk blindly down this path without legislating it properly in advance.
For those who haven’t seen the movie: Rich people start paying for perfect “designer babies”. A person’s genetic information becomes their whole identity; businesses only hire employees with the most genetic predisposition towards being good at the job, while regular people conceived “the old-fashioned way” get McJobs. Even wearing glasses is treated like a crippling disability that immediately and visibly marks someone as “inferior”.
It is extremely important that we pass laws to ensure that genetic engineering doesn’t create a new caste system.
I genuinely wonder where the line is between curing defects and eugenics. It seems razor thin how it can swing easiy into dark territory.
There will be no line for anyone who can afford it. Morality will not be in question. It’s basic human nature. To believe anything else is crazy
I remember this was literally the question posed to us by an ethics professor 20 years ago. Now it’s a reality.
A person with Down’s can live a happy fulfilling life, but most parents would never choose to have a child with Down’s if it could be born ‘normal’ instead. So we’re essentially removing them from the gene pool and human race.
It’s eugenics for sure. I’m not sure if it’s unethical though. It’s pretty complex.
Stopping fetuses from developing Down’s Syndrome in my opinion isn’t unethical because it will genuinely improved their quality of life. They will live longer lives, have fewer health problems, etc. The slippery slope however was pretty well covered in the film Gattica in which people not only start requesting designer children but the world becomes a dystopian utopia where the genetically perfected are unfairly favored as the ruling class while the genetically unmodified become relegated to the worker/slave class.
I don’t think Downs works like that.
It’s already being removed, since people choose abortion over downs and since people with Downs don’t have children (normally).
It is not hereditary. It’s an error or mutation that can occur for anyone. The chances are higher the older the parents are.
There’s hereditary factors but it’s because the genes in charge of replication are flawed.
The one thing you can guarantee of the human race though is we will do it before we really put the thought in to “if” we should do it.
I have ADHD and have 2 boys on the spectrum. Despite the challenges with my younger and higher needs son I don’t know if given the opportunity to play God if I would. As you said it’s an extremely complex question I don’t know if anyone is truly equipped to answer and I’d argue we definitely aren’t mature enough to start playing God.
Here be dragons.
Personally, I’d much rather have never been born than be as neurodivergent as I am. We all exist without our consent, and I think preventing disabilities and neurodivergence in our children is no more unethical than having children in the first place. I’d never make the decision for people who already exist, I know some people consider it a part of who they are and I wouldn’t want to change that. However, with hypothetical offspring, they aren’t anybody yet. You can’t take away part of a identity that doesn’t exist.
What scares me is the idea that having neurodivergent children could be outlawed. I think neurodivergence does bring a lot of value to humanity as a whole, and while I don’t think there’s anything egreiously unethical about an individual preventing it in their child, the idea that a government could have that much power over how we have children is absolutely fucking terrifying.
This is something I’ve thought a lot about. I hope you appreciate my rambling or at least don’t find me inconvenient to ignore
I do appreciate it and stresses why it’s such a nuanced topic and why I feel we (collective) are not mature enough to make the decision about if we should be playing God.
My 12 year old who is high needs is also the happiest and gentlest boy despite the challenges and when asked he feels he is not different and more importantly, he feels normal.
He also has T1D. I’d much rather we focus CRISPR on solving the problems we currently have than erasing the “inconvenience” of a neurotypical having a kid with autism, ADD or Autism.
My understanding is that women with down syndrome only have a 30-50% chance of fertility, and men are generally infertile. Additionally there are laws in place to prevent those with mental disabilities from being taken advantage of sexually, which lessens the chance of children even more. It’s a spontaneous mutation, so they wouldn’t be removed from the gene pool.
https://pmc.ncbi.nlm.nih.gov/articles/PMC6603116/
If 99℅ of pregnancies are screened and the gene’s edited then, yeah, you’re effectively eliminating people with Down’s from our world.
Unless society collapses and the Quirk returns naturally.
Realistically, gene editing will never be affordable for the vast majority of the world’s population. But today, abortion is chosen up to 93% of the time instead. If the alternative is a live, healthy birth, I can’t see any ethical issues.
https://obgyn.onlinelibrary.wiley.com/doi/10.1002/pd.2910
Reminds me of Cyprus with Thalassemia,
they were mostly against termination, but when they introduced screenings, and optional termination. the disease mysteriously disappeared. even though publicly they were against it
(it’s a story I read about it a long time ago, so take it with a grain of sand)
Well, it looks like your memory is somewhat correct.
https://pubmed.ncbi.nlm.nih.gov/17486509/
i personally call it “soft-eugenics”.
not too give it moral traits, it just is
Isn’t eugenics more about choosing who can reproduce for the best outcome? Curing after the facts doesn’t seem to fit that.
I think what is talking about is like everyone now forced to have blue eyes with gene editing so is it considered a type of soft genocide or something.
Nah, man, forget blue eyes. Think neon purple. With natural blue hair. Fucking anime shit.
And just imagine what furries will do to themselves once they get their paws on this tech…
Nono, the paws come after
Yeah now you’re talking! Cat girls/boys here we come!
Blade runner or deus ex timeline
Batman beyond. They will create batman beyond.
Not saying this is what you’re saying, but it’s attitudes like this that make me see red. We gotta stop letting our society become so atomized that we’ve replaced tribalism with Turbo Tribalism.
Not clear to me what you are trying to say.
Groups who are so desperate to maintain a group identity that they think something like a child getting cochlear implants or other actual remedies to handicaps is equivalent to “genocide” against their group. (that’s a thing.)
Everyone is susceptible to this syndrome to some degree, but you see it the most when you see people suggest the possibility of positive change.
Well, deaf people at least have the argument that they do have their own languages and cultures.
Of course they lose that argument when they ignore the fact that they can still teach their children their language and culture even if said children can hear, though, so it isn’t a very good argument, but it is an argument, I guess. 🤷♂️
Watch The Sound of Metal, it’s very good
I’d never heard of it, but after reading about it it looks like basic depressive Hollywood drama slop with some anti-cochlear implants¹ and anti-metal music² propaganda and the usual “learn to be happy with the cards you’re dealt” conformist bullshit³ mixed in, so no thanks, I think I’ll pass, I’m already angry enough without having to suffer through this sort of shit.
1.– Sure, cochlear implants kind of suck when compared to working ears (though maybe not so much when compared to somewhat working ears with tinnitus), but someone born deaf won’t be able to tell the difference, having nothing to compare, and at least they’ll warn you when a car is honking for you to get out of its way (and, frankly, quite often at work I wish I could just unplug my ears and plug in some music, so they’ve got their good sides too).
But we weren’t talking about cochlear implants; we were talking about CRISPR. We were talking about giving deaf people proper working ears. Nah, fuck that. If we can do that we can do better. Give everyone who wants it the ability to hear as well as, say, a dog. I, and lots of people, would pay good money for that.
2.– Seriously, what the fuck. Have we learnt nothing since the eighties satanic panic? American religiosity and so-called morals are a fucking cancer on global culture. Keep that fucking shit to yourselves, if you enjoy wallowing in each other’s misery that much.
3.– Fuck. That. Fuck the cards I’m dealt. I’ll make my own fucking cards. Play them how I want. And if I have to, I’ll make my own fucking game (creative commons licence, of course, in case anyone else is into it).
Limits are meant to be broken, not embraced.
Oh looks good! appreciate the recommendation.
Ah thanks for the clarification.
This isn’t eugenics or close to it, it’s fixing actual problems before someone is born, not choosing who has rights to breed. If they announced a therapy to guarantee a child will grow up immune to corporate propaganda or be able to use their brain in a rational, well-planned and thoughtful way, and have exceptional language skills, we should voluntarily hand the world over to them. Because what’s happening right now is the opposite of that.
Right now capitalism is imposing eugenics on us. The system and the cost of life has created a very real system deciding who can have families. If tools emerged that could guarantee the kids we DO have aren’t subject to the same weaknesses and limitations, we need to capitalize on every advantage we can.
I agree. Eugenics is about harming the rights of the would-be parents. It means telling them, “You have traits we consider undesirable, so we will forcibly prevent you from having any child whatsoever.”
To me, that’s different from parents choosing to avoid having a child with certain traits. Or not having children at all.
If parents decide to cure a disorder in their future child, or decide to abort a pregnancy, nobody is stopping those parents from trying again. The parents themselves have not been deemed undesirable and unworthy to pass on their genes.
You’re definitely right how this without proper regulation could get out of hand with unethical individuals trying to edit genes. I’d say from my non-geneticist perspective the line would be “would editing this gene improve the individual’s quality of life or improve their life expectancy”. Operationalizing"quality of life" is obviously crucial here and can’t be defined socially but medically such as “no debilitating pain”.
I do wonder how things like this will impact existing communities of individuals with disabilities. I’d expect it would probably increase discrimination as it will increase the perception of people with disabilities as being “curable” which isn’t always possible or even desirable.
Yeah this is scary. Down syndrome is definitely in the gray area too where it can be viewed negatively but plenty of people have it and lead fulfilling lives. Wipe cystic fibrosis out of a fetus and all but the most staunch biological purists would agree it was a good thing. Make your fetus white, blonde, and blue eyed and it’s obviously eugenics. I don’t know how I feel about this.
Completely apart from the ethics, I think this technology is really cool though.
They live fulfilling lives at the detriment of others who have to live less fulfilling lives, maybe they don’t see it that way, but its added responsibility
Actual Nazi rhetoric btw
this is killing no one, its the same person tho
There are a lot of reports and interviews with ppl who have down syndrome that are not happy at all with their situation. Ie. Unable to have a driving licence, go to university, huge disadvantage on the dating market… the list goes on. I’m not saying they can’t have fulfilling moments but we also shouldn’t kid ourselves and look at down syndrome with rosy eyes. If it could be cured everyone would do it instantly.
I’m not looking at it with “rosy eyes”, I’m just explaining that to me it’s not nearly as cut and dry as something like cystic fibrosis.
https://en.m.wikipedia.org/wiki/Social_model_of_disability
Notice how everything you listed is a result of society’s treatment of them and not necessarily their learning disability itself?
Cognitive impairment isn’t a social construct.
Phenotype vs biological normative.
Deaf people will decry “fixing” a person hearing impaired in the womb. Yet, it’s a correction to biological normative.
Adjusting a gender to a different one in the womb would not be.
Adjusting physical traits for looks wouldn’t be.
Adjusting a physical trait like spinal deformity would be.
Adjusting for general height would not be.
If there is something diagnosable in the ICD-10 codes we have, and it’s preventable in a population, it would not be eugenetics. Remove gene editing as the tool, but just say “magic” a cure. Cures apply to diseases, not traits.
You don’t cure being black. You CAN cure sickle cell.
I think the line is pretty clear.
You simply use existing diagnostic criteria of deviation from biological normative function.
The diagnostic criteria and the culture that determines that criteria are both subject to change. lots of things that people consider perfectly normal now would be classified as a disease or disorder in the past.
Who defines the diagnostic criteria?
Gattaca is the semi-dystopian vision of our future if we just walk blindly down this path without legislating it properly in advance.
For those who haven’t seen the movie: Rich people start paying for perfect “designer babies”. A person’s genetic information becomes their whole identity; businesses only hire employees with the most genetic predisposition towards being good at the job, while regular people conceived “the old-fashioned way” get McJobs. Even wearing glasses is treated like a crippling disability that immediately and visibly marks someone as “inferior”.
It is extremely important that we pass laws to ensure that genetic engineering doesn’t create a new caste system.
they should poll people with down syndrome. not carers, not family, no people who work with them.
if they consider they idea obscene, them or should be considered obscene, of they consider it a must, then it’s ok.
I think a fair line is removing debilitating genetic conditions, but not for cosmetic uses.
If the person grows old enough that they have dysphoria for some reason then cosmetic surgeries are pretty routine these days.
I’m fine with it at this point.