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.
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: