High-profile autism genetics project paused amid backlash
nature.com
nature.com
> Concerns about the study include fears that its data could potentially be misused by other researchers seeking to ‘cure’ or eradicate ASD.
There is a fine line here. The average person would be better off not having ASD just like they would be better off not being 'deaf'. Unless you disagree which gets into a tricky area.
Leaving a person's abilities up to chance is arbitrary and doesn't solve anything. Unfortunately we can't let everyone decide for themselves since these decisions are done prior or soon after birth.
Restricting a parent's ability to decide the health of their offspring also seems more wrong until you realize a parent could decide to make their offspring deaf, blind, etc.
That would open a whole can of worms. What if some society says black skin is a disability so black people shouldn't be allowed to reproduce?
I'm going to put it another way. Does this really pass your own personal sanity check? That parents should be allowed to:
- Amputate their children's limbs (Various developmental defects
- Remove their children's eyes (Blindness)
- Perforate their children's eardrums (Deafness)
- Remove their tongue / vocal chords (Mutes)
- Paralyze their kids (Various forms of musculoskeletal issues)
- Inflict brain damage on their kids (various forms of intellectual disabilities)
I left it out intentionally as while I personally think it's in the same category, it's unfortunately sufficiently normalized as to pass without question.
Here, I'd probably have that be legal. Not because I approve of it, but because the alternative, regulating who gets to reproduce, is worse.
As for the existing cases of child abuse, we've already got things for that. We have anti-child abuse laws and their like. They're not perfect, but they denote a line of behavior beyond which is not tolerated.
It worked like that a few hundred thousand years ago and we seem to have mostly collectively decided as a species that this was not the way to go
Inflicting deafness is absolute, unmitigated cruelty. The so called "deaf culture" is a sick cult-like group with extremist memes that glorify a defect.
Deafness isn't a feature, it's a bug. It's a crippling disability, and destroys any chance at normal social interactions from birth, requiring significant extra effort by every individual in the deaf person's life to accommodate. It easily leads to depression, antisocial behavior, and other psychological issues.
Worst of all, it restricts the person from experiencing all of the music, conversation, nature and warning alerts and laughter and the vast beautiful landscape of sound there is to experience in the world.
Don't enable monsters by trying to be accepting of differences. It's not cosmetic or trivial or cultural, hearing is a fundamental feature of the human experience.
> a parent could decide to make their offspring deaf, blind, etc.
Not, they couldn't do it without a lot of external help. And then, everybody in that team would go to jail. Society shouldn't move following the insane outliers. This would be like saying that as a psycho could drive a car against somebody, we all should stay away from cars.
The inability to make friends due to the behavioral issues that arise from living with ASD is torturous. It's probably why ASD is also linked with depression. If I weren't intelligent enough to work a technical job where people don't need to interact me, I probably wouldn't be around today.
High intelligence is actually a handicap for friendship, and average intelligence is advantageous for friendship.
Unfortunately, I can a/b test with my sibling to see how my life could have gone. :(
Can we say that a particular type/kind/severity is not disadvantageous on average? But what if it has a higher variance in life/social outcomes (some people are considerably worse off but others are considerably better off compared to a non-ASD population).
Its quite complicated because if a condition is not debilitating then it is also less likely to be diagnosed which means they would be underrepresented in studies.
The big issue is that when you make statistical bets the medical POV is to aim for average, healthy, normative. Is it better to have a gene that has a 10% chance of increasing IQ but a 20% chance of having some mental disorder? It isn't fair to show examples of people that got 'both' without considering the people that only got the mental disorder.
Also, to be fair, it is a trope of any Hollywood serial TV show (House, CSI, etc.) that at least one episode depicts an ASD individual for whom it is either not a disadvantage or benefits them, etc. I wouldn't say these depictions are any closer to a real or respectful representation, However, I would say that there is just as much over-glamorizing of mental health conditions in the current year as there is stigmatizing which is detrimental to everyone.
It solves the problem of fairly allocating traits which are important to have in a society, but for some reason are not preferred. Humans cannot be trusted with complete genetic control. An extreme example would be China's combination of highly sexist society and one-child policy leading to everyone wanting boys and not girls, leading to a demographic catastrophe. Imagine how much worse it would have been if parents could freely and reliably choose the sex of their offspring, instead of having to sneakily murder their infant daughters.
...it sounds like they consulted / planned to consult at least 10,000 members of it.
Maybe the problem is where a policy, practice or simply prejudice would draw a line.
There is autism in my family, some members are officially diagnosed, and while it's not my case (I was born in France in the 1950'), I am certainly not someone with an ordinary world view. Otherwise I managed to have a good enough career, sometimes managing up to 100 people.
The idea that I could have been "suppressed" because some prejudice is frightening.
And if he can't it still begs the same question because we don't see as unborn until x weeks as human yet, that would cancel it out. Otherwise we could use the same argument for every aborted unborn?
- Dan Aykroyd - Anthony Hopkins - Satoshi Tajiri (creator of Pokémon) - Greta Thunberg
Particularly in this industry, autism, ADHD and other's are overrepresented compared to the typical population averages.
I don't have autism myself (I do have ADHD), but I've met quite a few people who do. By the time they reach adulthood (and frankly a long time before), they're quite adept at masking [0]. Pretending to be a normal person to fit into a normal world.
It affects people in different ways and to different severities, particularly in terms of what kinds of accomodations are required. But they can be some of the most intelligent, caring, hard working people you'll come across.
It's problematic because while disabilities suck, people thrive in spite of them. Myself included.
Even screening for Down syndrome feels quite problematic.
Some of the best ways to help people with autism is accomodate them, let them live without masking the things that often put normal people off.
Screening for Down syndrome or autism feels very close to screening for gender.
It's an arbitrary choice made on the foundations of very shaky knowledge. That's not your fault, the general understanding of different neurological conditions is woeful and full of prejudice.
There's legitimate reasons to terminate a pregnancy that are completely unrelated to trying to screen for a "normal" kid.
But this study does not appear to be coming from a good place, or a place of genuine understanding. This snippet highlights it:
> But “there’s a component of suggesting that autistic people don’t have empathy”, she says. “That has been extremely damaging and stigmatizing for autistic people, and is very much at odds with many autistic people’s lived experience, which is often a sort of uncontrollable excess of empathy.”
From personal experience some autistic people have incredible capacity for empathy.
[0] https://www.healthline.com/health/autism/autism-masking#defi...
Nothing about down syndrome, autism or gender qualifies as "very shaky knowledge". It's the woman's choice. It's her body and she has the right to abort for whatever reason she wants.
> There's legitimate reasons to terminate a pregnancy that are completely unrelated to trying to screen for a "normal" kid.
The only legitimate reason is the woman doesn't want to carry the pregnancy to term. If it is wrong to abort an autistic baby, then all abortions are wrong. Think about it.
> But this study does not appear to be coming from a good place, or a place of genuine understanding.
A good place? You get to decide? If you want an autistic kid, you have one. And if another person doesn't want one, they don't have to have one? What ever happened to the choice in pro-choice?
It’s disgusting that this even got as far as it did before it was put on hold, but it’s still progress.
I’m laughing/crying at the last quote there about how the researchers should have known better when the researchers are some of the top names in publishing contentious, dehumanising, unrepeatable, unscientific claims about Autism and Autistics. These people have made their careers off the back of refusing to understand, meaningfully engage, and ironically empathise with Autistic folks. I suppose this is a step in the right direction, though. It’s being talked about. I hope things are really changing.