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.
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: