By “best policy” I meant “current most preferred policy”.
“prospectively ban genomic choices for traits that our cost-benefit analysis said are bad” is not my position. My position is “ban genomic edits that cause traits that all reasonable cost-benefit analysis agree are bad”, where “reasonable” is defined in terms of near-universal human values. I say more about this here.
I skimmed the article earlier, and read through it more carefully now. I think “edited children will wish the edits had not been made” should be added to the list of exceptions. Also, if we can already predict with high confidence which changes will be regretted, why wait until the next generation to ban them?
Oh, I guess, why haven’t I said this already: If you would, consider some trait that:
you have, and
is a mixed blessing, and
that many / most people would consider a detriment, and
that is uncommon.
I’l go first:
In my case, besides being Jewish lol, I’m maybe a little schizoid, meaning I have trouble forming connections / I tend to not maintain friendships / I tend to keep people at a distance, in a systematic / intentional way, somewhat to my detriment. (If this is right, it’s sort of mild or doesn’t fully fit the wiki page, but still.) So let’s say I’m a little schizoid.
This is a substantively mixed blessing: I have few lasting relationships and feel lonely / disconnected / malnourished, and am sort of conflicted about that because a lot of my intuitions say this is better than any available alternative; but on the other hand, I am a free thinker, I can see things most others can’t see, I can pursue good things that most others won’t pursue.
Now, if someone reads the wiki page, they will most likely come away saying “hell no!”, and would want to nudge their child’s genome away from being like that. Fair enough. I wouldn’t argue against that. I might even do the same, I’m not sure; on the other hand, I do think I have a way of thinking that’s fairly uncommon and interesting and useful and in some ways more right than the default. Either way, there’s no fucking way that I want the state to be telling me which personality traits I can and can’t pass on to my child.
Ok now you:
E.g. do you have a neuroatypicality such as autism, ADHD, bipolar, dyslexia? Some sort of dysphoria or mental illness? A non-heterosexual orientation? Etc. (I’m curious, but obviously not expecting you to share; just asking you to think of it.)
If so, consider the prospect of the state saying that you can’t pass this trait on.
If not, well nevermind lol. There’s a bit more theory here, just in case it helps; specifically:
Beyond that, any phenotype at all will correspond to some kind of consciousness. Someone with insomnia, even if they acknowledge that having insomnia is almost entirely worse than not having insomnia, might still wish to have other people with insomnia to be friends with, simply because an insomniac has a somewhat different experience and way of being than a somniac and can therefore understand and relate specially to insomniacs. So removing any type of person is to some extent changing who humanity is.
Finally, a given type of person (so to speak) might view themselves as part of a “cross-sectional coalition”. In other words, even though a deaf person is not only a deaf person, and views zerself as part of the whole human collective, ze might also view zerself as being part of a narrower collective—deaf people—which has its own being, rights, authority, autonomy, instrumental value, and destiny.
I do not have autism/ADHD/bipolar/dyslexia/dysphoria or a non-heterosexual orientation. If I woke up tomorrow with one of those, I would very badly want it reverted.
However, it seems obvious to me that if being a little schizoid made you a free thinker, able to see things most others can’t see, able to pursue good things that most others won’t pursue, then it does not count as “unambiguous net harm” and the government should have no say in whether you can pass it on. That’s not even close to the line of what the government should be allowed to prohibit.
I think “edited children will wish the edits had not been made” should be added to the list of exceptions.
So to be clear, your proposal is for people who aren’t blind to decide what hypothetical future blind children will think of their parents’s decisions, and that judgement should override the judgement of the blind parents themselves? This seems wild to me.
… Ok possibly I could see some sort of scheme where all the blind people get to decide whether to regulate genomic choice to make blind children? Haven’t thought about this, but it seems pretty messy and weird. But maybe.
My position is “ban genomic edits that cause traits that all reasonable cost-benefit analysis agree are bad”, where “reasonable” is defined in terms of near-universal human values.
But it kinda sounds like your notion of “near-universal” ends up just being whatever your CBA said? I guess I’m not sure what would sway you. Suppose for example the following made-up hypothetical: there’s a child alive today whose blind parents intentionally selected an embryo that would be blind. Suppose that child says “Actually, I’m happy my parents made that choice. I feel close to them, part of a special community, where we share a special way of experiencing the world; we sense different things than other people, and consequently we have different tastes, and this gives us a bit of a different consciousness. Yes there are difficulties, but I love my life, and I wouldn’t want to have been sighted.”. In this case, do you update?
Maybe we’re at an impasse here. At some point I hope to set up convenient streaming / podcasting; if I’d already done so I’d invite you on to chat, which might go better.
Ok possibly I could see some sort of scheme where all the blind people get to decide whether to regulate genomic choice to make blind children?
Yes, blind people are the experts here. If 95% of blind people wish they weren’t blind, then (unless there is good reason to believe that a specific child will be in the 5%) gene editing for blindness should be illegal.
(Although we might overrule blind people if they claimed to be happy but had bad objective measures, like high rates of depression and suicide.)
Yes, blind people are the experts here. If 95% of blind people wish they weren’t blind, then (unless there is good reason to believe that a specific child will be in the 5%) gene editing for blindness should be illegal.
This is absolutely not what I’m suggesting. I’m suggesting (something in the genre of) the possibility of having that if 95% of blind people decide that gene editing for blindness should be illegal, then gene editing for blindness should be illegal. It’s their autonomy that’s at issue here.
Fair point, I glossed over the differences there. Although in practice I think very few blind people who wish they could see, would be in favor of gene editing for blindness being legal.
ASAN opposes germline gene editing in all cases. Germline gene editing is editing a person’s genes that they pass down to their children. We do not think scientists should be able to make gene edits that can be passed down to a person’s children. The practice could prevent future generations of people with any gene-related disability from being born. This is eugenics and a form of ableism.
ASAN opposes non-heritable gene editing for autism. This is when scientists edit a person’s genes in a way that can’t be passed down to their children. ASAN is against ever using this kind of gene editing for autism. We think it would be used to treat or “cure” autism. We do not want “cures” for autism. We want to continue being autistic. We want there to be rules saying people can’t use genetic research to find a “cure” for autism. We are setting this standard for autism and the autistic community because it is what most of our community members believe.
Not directly comparable, but related. (I disagree with their reasoning and conclusions, I think.)
Interestingly, they make the same suggestion I mentioned above:
Some disability communities might want non-heritable gene editing. For example, some people with epilepsy are okay with non-heritable gene editing for the genes that cause their seizures. We think it should be up to each disability community to decide if they are okay with nonheritable gene editing for their disability. Researchers and policymakers should listen to each disability community about how that community feels about non-heritable gene editing.
By “best policy” I meant “current most preferred policy”.
“prospectively ban genomic choices for traits that our cost-benefit analysis said are bad” is not my position. My position is “ban genomic edits that cause traits that all reasonable cost-benefit analysis agree are bad”, where “reasonable” is defined in terms of near-universal human values. I say more about this here.
I skimmed the article earlier, and read through it more carefully now. I think “edited children will wish the edits had not been made” should be added to the list of exceptions. Also, if we can already predict with high confidence which changes will be regretted, why wait until the next generation to ban them?
Oh, I guess, why haven’t I said this already: If you would, consider some trait that:
you have, and
is a mixed blessing, and
that many / most people would consider a detriment, and
that is uncommon.
I’l go first:
In my case, besides being Jewish lol, I’m maybe a little schizoid, meaning I have trouble forming connections / I tend to not maintain friendships / I tend to keep people at a distance, in a systematic / intentional way, somewhat to my detriment. (If this is right, it’s sort of mild or doesn’t fully fit the wiki page, but still.) So let’s say I’m a little schizoid.
This is a substantively mixed blessing: I have few lasting relationships and feel lonely / disconnected / malnourished, and am sort of conflicted about that because a lot of my intuitions say this is better than any available alternative; but on the other hand, I am a free thinker, I can see things most others can’t see, I can pursue good things that most others won’t pursue.
Now, if someone reads the wiki page, they will most likely come away saying “hell no!”, and would want to nudge their child’s genome away from being like that. Fair enough. I wouldn’t argue against that. I might even do the same, I’m not sure; on the other hand, I do think I have a way of thinking that’s fairly uncommon and interesting and useful and in some ways more right than the default. Either way, there’s no fucking way that I want the state to be telling me which personality traits I can and can’t pass on to my child.
Ok now you:
E.g. do you have a neuroatypicality such as autism, ADHD, bipolar, dyslexia? Some sort of dysphoria or mental illness? A non-heterosexual orientation? Etc. (I’m curious, but obviously not expecting you to share; just asking you to think of it.)
If so, consider the prospect of the state saying that you can’t pass this trait on.
If not, well nevermind lol. There’s a bit more theory here, just in case it helps; specifically:
I do not have autism/ADHD/bipolar/dyslexia/dysphoria or a non-heterosexual orientation. If I woke up tomorrow with one of those, I would very badly want it reverted.
However, it seems obvious to me that if being a little schizoid made you a free thinker, able to see things most others can’t see, able to pursue good things that most others won’t pursue, then it does not count as “unambiguous net harm” and the government should have no say in whether you can pass it on. That’s not even close to the line of what the government should be allowed to prohibit.
So to be clear, your proposal is for people who aren’t blind to decide what hypothetical future blind children will think of their parents’s decisions, and that judgement should override the judgement of the blind parents themselves? This seems wild to me.
… Ok possibly I could see some sort of scheme where all the blind people get to decide whether to regulate genomic choice to make blind children? Haven’t thought about this, but it seems pretty messy and weird. But maybe.
But it kinda sounds like your notion of “near-universal” ends up just being whatever your CBA said? I guess I’m not sure what would sway you. Suppose for example the following made-up hypothetical: there’s a child alive today whose blind parents intentionally selected an embryo that would be blind. Suppose that child says “Actually, I’m happy my parents made that choice. I feel close to them, part of a special community, where we share a special way of experiencing the world; we sense different things than other people, and consequently we have different tastes, and this gives us a bit of a different consciousness. Yes there are difficulties, but I love my life, and I wouldn’t want to have been sighted.”. In this case, do you update?
Maybe we’re at an impasse here. At some point I hope to set up convenient streaming / podcasting; if I’d already done so I’d invite you on to chat, which might go better.
Yes, blind people are the experts here. If 95% of blind people wish they weren’t blind, then (unless there is good reason to believe that a specific child will be in the 5%) gene editing for blindness should be illegal.
(Although we might overrule blind people if they claimed to be happy but had bad objective measures, like high rates of depression and suicide.)
This is absolutely not what I’m suggesting. I’m suggesting (something in the genre of) the possibility of having that if 95% of blind people decide that gene editing for blindness should be illegal, then gene editing for blindness should be illegal. It’s their autonomy that’s at issue here.
Fair point, I glossed over the differences there. Although in practice I think very few blind people who wish they could see, would be in favor of gene editing for blindness being legal.
I’m genuinely unsure whether or not they would. Would be interesting to know.
One example, from “ASAN Statement on Genetic Research and Autism” https://autisticadvocacy.org/wp-content/uploads/2022/03/genetic-statement-recommendations.pdf :
Not directly comparable, but related. (I disagree with their reasoning and conclusions, I think.)
Interestingly, they make the same suggestion I mentioned above: