It is impossible to understand the appeal of eugenics without realising that it held both utopian and dystopian elements. This is particularly important, because the return of eugenics also involves both. And eugenics really has returned, including under its old name. What may be called the neo-eugenic revival sometimes takes an explicitly racist, white-supremacist form. It talks about birthrates, IQ levels and the impending “civilisational collapse” of the west. It focuses on what it sees as distinct, unequal racial groups. It harkens back to classical eugenic dystopias, such as the influential American writer Madison Grant’s The Passing of the Great Race, published in 1916, an inspiration for Tom Buchanan’s racist rants in The Great Gatsby.
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As it turned out, medical genetics really did produce an effective treatment for spinal muscular atrophy. About a decade ago, a drug called nusinersen was being developed. Some studies suggest that if it is administered early enough, it can wholly counteract the symptoms of the condition, while arresting its progression in adults. But medical genetics also proved that I didn’t have SMA after all. The original diagnosis was made on the basis of muscle biopsies and clinical guesswork. When a test for the genetic markers for SMA became available, mine came back negative. Instead, I was shown to have an even rarer condition – rarer, and less likely to attract research funding. I am tempted to quote Franz Kafka, who once remarked that there is infinite hope in the universe, only not for us.
But, in truth, that isn’t quite apt. Losing both the original diagnosis and the possibility of a treatment felt like a wave of sorrow, tinged with relief. Strange as it may seem, it also gave me a greater sense of freedom, that my life was really my own.
Don’t get me wrong. If there was an actual cure for my condition, I would take it. But there won’t be one, at least not for me. Too much time has passed; too much of my life is behind me. It is my life as it unfolded, and I try my best not to compare it to lives I didn’t live.
It is easier to think this way in your forties than in your teens. In the company of my nondisabled friends, I see plenty of injuries, illnesses and vaguely defined aches. We all have the markings of life. It’s not exactly that my disability ceases to matter as I grow older. In one way, it’s quite the opposite, as I feel the physical impact of the world on my muscles and joints. But I do feel a sense of convergence with my kith and my kin about the tenuousness and frailty of it all, about the need to take care of each other, as we hurtle towards what is coming.
Call it a kind of realism. Those of us who have kids know another side of it. If you plan to have a particular kind of child, you are setting yourself up for failure. Every parent I know has had to abandon their notions of what they thought their children would be for the reality of their particular children. I don’t think any one of them subscribed to the idea of an ideal baby. I hope they didn’t. Such an ideal is a terrible thing for parents as well as children to live up to.
This is the most corrosive effect of liberal neo-eugenics: in positing that an individual ideal of embodiment is something that can be specified, quantified and realised, it creates a framework for torturing both our children and ourselves. Why are we not this perfect thing? Why are we not fitter, happier, more productive? I’m not particularly sentimental about the value of disability in any particular case, but I think it is crucial to acknowledge disability as part of human variation. In treating ever more traits and qualities as things to be measured, ranked and diagnosed, we are doing the opposite – turning variation itself into something like disability.
I would reconsider being child free if medicine can promise that my offspring wouldnt inherit my npf (see edit), chronic depression, migraines and bad eye sight, all of which runs in my family. And yes, Id pay for that treatment.
Edit: Meant NDD, npf is the swedish abbreviation
Out of curiosity, does that mean you’d consider adoption?
I did consider it but chose not to go through the process due to the difficulty of being allowed to adopt when you have a history of mental illness. We have been “stödfamilj”/“avlastningshem” for the local social services though.
I am sorry that sounds really tough.
The superficiality, vanity and fundamental misunderstandings of the human condition of the West strike again, lol. “Raising children in a society with defined, strict moral standards, in prosociality and understanding, to make them the best people possible which will in turn make the best society possible? The fuck? Nah man just give me Sydney Sweeneys, Henry Kissingers and Tom Bradys, people don’t have free will/character and are just selfish, sociopathic, hedonistic automatons anyway so all that matters is being appealing and/or competent”.
strict moral standards
best I can do in consent based morality, sorry.
Nobody can “force” you to think and act right though, they can only force/coerce you to pretend/hypocritically go through the motions (whilst still thinking what you did before was right regardless, and you will ‘go back to your old ways’ as soon as the pressure is gone)… so I guess morality always “requires consent” since it’s the product of conviction and free will?
The superficiality, vanity and fundamental misunderstandings of the human condition of the West strike again, lol
This isn’t limited to the “west.”
You’re kind of describing one of the main facets of Buddhism, the human tendency to “reach” for things they don’t have.
Decidedly not a western concept.
How are “superficiality, vanity and fundamental misunderstandings of the human condition” and “the human tendency to “reach” for things they don’t have” related? Those seem like entirely different things.
Even if there’s something universal, that doesn’t mean that it’s equal in degree across cultures. One culture may be mindful of a certain tendency while another embraces that tendency fully.
It was a non sequitur that I was trying to reply to (perhaps “trying to understand” what the poster meant and less so what they ended up writing), but you’re absolutely right.
Even in the context of Buddhism, the philosophy doesn’t just end at the concept of craving/suffering, but lays out a specific set of behaviors intended to address it.
Americans especially (speaking as one) tend to universalize our culture because it’s often people’s entire frame of reference. Every country in the world has to understand how we think, but we rarely bother to learn how other people think. So we don’t have self-awareness because we assume everyone is just like us.
The capacities are general and human but the excessive tendencies are cultural (and very infectious).
The fact that you identify as a devout fan of an invisible friend is right in line with the cherrypicking & selective reading MO your book club’s known for. How curious.
Friend? Do you think God and us are peers? 🙃😑
I can see this passing under the guise of fixing medical conditions
What may be called the neo-eugenic revival sometimes takes an explicitly racist, white-supremacist form
Lol! “Sometimes,” Jan?
Really?
explicitly
Yes, really. It’s only sometimes explicit, the rest of the time it’s implicit.
Ahh. I see.
What’s the best baby? One who’s healthy? Or one who’s white and male?
If it’s the latter, can I just have the one that other guy didn’t want? Some people just want to have a baby, and if people are paying for designer babies, can the rest of us just adopt the ones the rich people don’t want? We don’t care who their parents were. We don’t care what colour their skin is. Some of us just want to experience the joys of raising a kid.
What’s the best baby?
This one!!!
I think the point is those other ones won’t even be born
Can’t you adopt one? It’s not really related to this issue.
i wouldnt want a child considering everything thats going on in the world right now
That was interesting to read. Thanks for sharing.
I was just talking to my wife and kids about deaf culture and how it is being systematically erased by technology. This segways into not just treatment for a condition after the fact, rather custom genetic treatments tailored to fix whatever is the problem before the baby is born. Who would not want to use a retro virus to fix their babies genetic defect.
The real question is where does it stop. Why not ensure your child is highly intelligent, is athletic, has a certain eye color, etc. I think the answer with our current culture is it doesn’t. There has been, of course, fictional depictions of this in sci fi where you have something like Gattica. This is where you are basically unemployable if you are not genetically altered due to risk.
I prefer a simpler framing, there are a set of genes or traits we can define as bad, and we can try to remove them but no matter what this entire conception will have existential flaws and adhering to it will eventually lead to a collapse of diversity, the map is not the territory and what happens when you try to pretend a map is the territory is that you force a collapse of diversity in that territory…
edit The map is also not the territory because in order for the territory to be alive it must have many different maps that still nonetheless mostly agree in certain aspects.
We can’t necessarily know what the good levers are or how much of what we perceive as a good lever includes unrelated negative elements we falsely lumped in and we can’t necessarily know the consequences of correcting the bad levers are, especially for the overall genetic diversity of humanity.
This doesn’t mean we shouldn’t do it, it means this is a precarious territory to navigate.
Another way to say this is to state that there is no definition of intelligence not because we don’t have tools fine enough to measure it but because the very idea of capturing any meaningful aspect of intelligence with numbers or rigorously objective quantifications is absurd…
Of course, that makes perfect sense.
The precarious nature of making these type of decisions is very real. As you alluded to there can be trade offs or unintended side effects. For instance, high intelligence is also known to highly correlated with neurosis. The effect here could be making babies smarter could lead to a lot more neurotic people to deal with.
gattica, the one movie where he was a genitcally engineered clone. one trope in another show, it removes thier aiblity to EVOLVE when you genitically engineer your offspring.
Something something Star Trek Eugenics Wars.
There’s another angle I don’t think we talk enough about. Evolution. Wouldn’t this put a stop point to human evolution? With the ability to edit our genes like this would it mean that the mutations the human race might need to develop to survive going forward would never happen? Isn’t this basically another form of guaranteeing our eventual Extinction?
Great question but here is the thing, life has no one pattern, the divisions between species is far more often a blur than a hard line and not only is eugenics incorrect in committing the age old sin of attributing virtue to strength or purity it frames any kind of takedown of it in a way that traps one from understanding what life actually is. Evolution isn’t an engineering process it is the result of what the creatures that get by do, this includes humans tinkering with themselves while shouting into the sky they are now god, evolution still applies to them because it is not any singular thing you can point to.
Our methods of understanding the world, especially the physical one, have understandably focused on cutting things into tinier and tinier pieces to isolate precisely what the fundamental nature of things are, but this leads us to think this is how the universe is structured rather than how we can best interrogate it currently.
Eugenics hands you a hammer and tells you everything is nails if you look closely enough… but not only is that argument wrong, the idea of the nail and the hammer being seperate concepts that you have unconciously accepted is wrong.
Life is a conspiracy of fascimiles, it is always a mess when you look closer that appears to adhere to a unified system when you pull back, and the need to understand humanity through a process of endless division, measurement and categorization is actually violently hostile this property of life.
Life is never a body of perfectly replicating machines that are all finely tuned to the same mechanisms, life is always a conspiracy of fascimiles that only from the outside can be referred to comfortably as a species and if we deny that we also kill it… which is another way of stating the existential need for biodiversity. If you really accept the idea of biodiversity leading to fitness I don’t see how you can also truly accept the framing assumptions of eugenics.
This video by Hank Green about the fascinating answer to the silly/genius question “Who has the most genes?” does a good job of expressing the categorical thinking error that eugenics makes quite beautifully in the context of people who are genetic chimeras. How do they even begin to fit into this worldview of eugenics?
My advice is to throw out the entire way of thinking, yes genes exist but they are the residue of something much more complex not the ultimate overlords of centralized authority that determine life and its motive.
https://inv.nadeko.net/watch?v=xm_cWdTgg8k
Not even perfect. My wife doesn’t conceive so we did invitro. They discard all the embryos with detectable genetic diseases. When you have a baby, do you know the piece of mind that comes from knowing they are free of generic diseases or defects?
When you have a baby, do you know the piece of mind that comes from knowing they are free of generic diseases or defects?
No, but do you know how fucked up that sentence sounds when you begin to unpack it?
I am not trying to be a hardliner about this, but there is a really disturbing line of thinking here that people need to realize this slips into and you can see it in your careless and unreflective choice of the word “defect” as you raise a giant red flag above you.
What word would you have me use instead?
I fully understand the slippery slope, Gatica type situation were heading towards. Just wanted to chime in from the other side as a loving father simply for the perspective.
Sounds like “royal” inc3st with more steps. 🤢
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Eugenicists should be barred from reproduction tbh
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I mean, I sympathize, disease is miserable, but that’s too far in the opposite direction?
The risk of genetic engineering leading to cascading social inequity isn’t trivial. There are many, many solid sci-fi plots that illustrate exactly this.
And one could argue “just do it equitably!” Yes. That is the goal. It’s a work in progress. It’s kinda like saying “AGI will solve our problems” or “we’ll just geoengineer our way out of climate change.”
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It’s extremely alarming to me in the US to see the vast majority of the population in extremely poor health. It goes way beyond 1 generation of simply being overweight because they’ve been eating too much. So many people are structurally deformed, poorly developed, and poorly functioning due to multiple generations of horrible diets, antibiotic abuse killing off their host-native microbiomes and damaging their immune systems, lack of breastfeeding, extremely unhealthy people continuing to use their bodies to create other people (examples: 1, 2, 3), etc…
“Survival of the fittest” is brutal and uncivilized, but nature and natural selection also perform the vital function of keeping populations healthy. What we’ve done is myopically & indiscriminately overrule it without replacing it with intelligent and ethical alternatives.
What the actual hell? You willingly admit you agree with this by making it into an article??
edit wow what the hell you are toxic as shit get out of here you sick twisted human
https://maximiliankohler.blogspot.com/2020/02/are-people-in-public-health-failing.html?m=1
https://maximiliankohler.blogspot.com/2022/04/analysis-of-openbiomes-safety-and.html?m=1
https://www.reddit.com/user/MaximilianKohler/?mweb_loid=t2_19gtoycchs
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sure thing mengele fanboy
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This is dumb as hell.
Literally the only downside of eugenics is that people used it as justification to enforce their beliefs onto the reproductive rights of others. That’s it. This article keeps trying to draw parallels between historic expressions of eugenics (controlling others freedom) and genetic screening to avoid common diseases.
There is nothing wrong with using genetic editing to make your baby “better” (whatever that means to you). The problems only start when you start applying that to other people’s babies.
The author brought up that they would (a) immediately take a cure if it existed and (b) uses a wheelchair. I see no difference between that and genetically editing your baby. It’s a tool that exists to allow some people to improve their lives. If the author thinks that we should do that, then they should get off the wheelchair and crawl like nature clearly intended in their case.
There is nothing wrong with using genetic editing to make your baby “better” (whatever that means to you). The problems only start when you start applying that to other people’s babies.
What a wild sentence to read.
You know every baby is someone’s elses baby even your “own”? They are an individual not a rpg character selection screen?
Yeah, and the baby doesn’t get an rpg character creation screen in utero. So unless all babies are made in a test tube and then you can only pick a random zygote to be implanted, you already get significant input into your baby’s future. That’s not even touching on access to resources post-birth.
Unless your point is that reproduction is inherently unethical, then you’re just drawing an arbitrary line in the sand.
Edit: hell, mother gets almost direct input onto the baby’s future. They can smoke, drink, be stressed, etc.
Yeah, and the baby doesn’t get an rpg character creation screen in utero.
and neither should you
I don’t claim to know how to best navigate grey areas here, I am not a doctor, I am also not capable of creating a baby inside my body so this is inherently abstract in some sense for me, what I am saying is that this type of thinking has already lead you into problematic territory which is the danger at hand.
If you think I sit mulling over ways to ensure your kid can’t have the best life possible, no I am not a Republican and also you are trying to distract from my more nuanced point.
Something basic you learn in a good science education is that every step of the way in taking data is fraught with bias we are all to willing to forget about because of all the numbers and precise technical categories and how comforting it feels to fill up unknown spaces with them.
There are obvious ethical implications here and they do not demand the perspective that any kind of pre-emptive intervention to improve your child’s future quality of life is unacceptable, that is not my view and even if it was what would give me the authority to enforce it even if I could?
Anyone who becomes a parent already gets input on their child. In a very literal genetic sense. So when you say they shouldn’t, what you’re saying is either (a) in the interests of fairness, babies must be assigned to families at random or (b) babies are fundamentally unethical by definition.
Not to mention all the other aspects of life parents do for their children. If a parent shouldn’t get input, does that mean the author’s parents shouldn’t have gotten them a wheelchair when they needed it? Should parents refuse to give kids with bad eyes glasses unless the child directly asks for them?
There is no meaningful difference between using genetic editing to avoid having a child that cannot walk and giving a child that cannot walk a wheelchair. Both spite nature, which decided the child shouldn’t walk, equally.
You didn’t listen at all to my ephasis that I am not claiming to be able to identify or enforce any clear line here before you thought about my response.
Yes, much like I think 85% of the article was meaningless irrelevant drivel, I ignored the majority of your comment and focused on the part that seemed to have a point.
Clearly, I was mistaken, as you just clarified that you did not intend to have a point. I apologize. Carry on with platitudes about the sanctity of life.
