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.
PDF version. berkeleygenomics.org. X.com. Bluesky.
William Thurston was a world-renowned mathematician. His ideas revolutionized many areas of geometry and topology[1]; the proof of his geometrization conjecture was eventually completed by Grigori Perelman, thus settling the Poincaré conjecture (making it the only solved Millennium Prize problem). After his death, his students wrote reminiscences, describing among other things his exceptional vision.[2] Here's Jeff Weeks:
Thurston emphasized clear vision over algebra, even to a fault. Yair Minksy:
There was something else exceptional about Thurston's vision. Benson Farb:
His vision problems were congenital (present from birth). Gabai and Kerckhoff:
With due reverence for the dead, one nevertheless wonders if his disorder did help stimulate him to use his self-authority to persistently practice visualization.
The genetics of strabismus aren't well-understood, but it's clear that in some cases it is genetic[3]. Now, strabismus is not so uncommon. Over 1% of children have the condition, and the great majority of such people don't become mathematical pioneers. Thus there's no open-and-shut case to say that Thurston's genetics necessarily much influenced his life's work in this way.
But it's at least plausible that he had a genetically-caused visual impairment that spurred him to develop uncommon ways of thinking that generalized powerfully and allowed him to see strange things that others did not see.
(Screenshot from "Nil Geometry Explained!" by ZenoRogue, 2022 (https://www.youtube.com/watch?v=FNX1rZotjjI), on one of the eight Thurston geometries. Thurston didn't discover these geometries, but formulated and advanced the conjecture that these eight geometries can be used to build up any closed 3-manifold (that is, any "finite" 3-dimensional space, maybe curvy and twisty with wormholes, as long as it doesn't have edges and it doesn't go on forever in some direction).)
(Visualization of hyperbolic 3-space, from Geometry Center[4].)
(From "Visualization of Nil, Sol, and SL2(R) Geometries"[5].)
The lesson I want to here draw from Thurston's vision is that even a condition which seems so obviously worse to have, is not at all obviously a strict detriment. If, arguendo, Thurston's special mathematical insight was in part provoked by his impairment, then that impairment had quite mixed consequences—a life of additional difficulty for Thurston, and a treasure trove for humanity's geometric thought.
My intent with this lesson is to give some pause to those who think that there's an unambiguous universal "good" direction for genomes to go. That intuition leads people to suggest that it might be fine or good to prohibit or require certain uses of germline engineering. The assertion goes: If there is a disease, disability, or disorder, like blindness or deafness or dwarfism or autism, and if it's feasible to prevent that condition in a future child using germline engineering, then people should be required by law to do so if they can; or at least, it should be prohibited by law to make your child have such a condition. The condition harms the child, and there's no justification for propagating it.
Other people might view their own atypical condition as being of some special value, perhaps to them or to others, even if it comes with added difficulties. They may want to pass on to their child that special value, and to share in common with their child this way of being.
Thus there is a conflict.
My stance is: protection of genomic liberty for all. This stance does not imply that one ought not to prevent one's future child from having some sort of impairment, just because maybe hypothetically that could lead to the child gaining some unusual abilities in a few very rare cases. On the contrary, there's very good reason to choose to give one's child a genomic foundation for as much health and capability as possible[6]. Hopefully humanity can, with time, arrange things so that access to any unusual abilities or ways of being can be gained through the free choices made by, and the work exerted by, the children themselves, with no need for any exclusive genomic predisposition—as Thurston insisted was true of his own abilities.
But here I just want to suggestively ask, to those who say "No; disorder and decreased capability is obviously strictly worse and should be prevented through state intervention.": How sure are you that there aren't ways of being that you don't easily perceive or anticipate, but that are truly valuable to humanity at large and/or to the people who exist that way? Why impose your questionably-well-informed judgement on someone else's desire to propagate their way of being, without extremely good and near-undoubtable reason? If you come to a conclusion on this matter, it should be only after becoming able to appreciate the breadth of human ways of being.
A last quotation, from Benson Farb[2:1]:
PDF: https://www.ams.org/notices/201511/rnoti-p1318.pdf. Gabai, David, and Steve Kerckhoff. ‘William P. Thurston, 1946–2012’. Notices of the American Mathematical Society 62, no. 11 (1 December 2015): 1318–32. https://doi.org/10.1090/noti1300. ↩︎
PDF: https://www.ams.org/publications/journals/notices/201601/rnoti-p31.pdf. Gabai, David, and Steve Kerckhoff. ‘William P. Thurston, 1946–2012’. Notices of the American Mathematical Society 62, no. 11 (1 December 2015): 1318–32. https://doi.org/10.1090/noti1300. ↩︎ ↩︎
https://www.frontiersin.org/journals/ophthalmology/articles/10.3389/fopht.2023.1233866/full. Martinez Sanchez, Mayra, and Mary C. Whitman. ‘Genetics of Strabismus’. Frontiers in Ophthalmology 3 (20 July 2023). https://doi.org/10.3389/fopht.2023.1233866. ↩︎
‘Geometry Center Videos, Revisited’. Accessed 27 March 2025. https://www.cs.ubc.ca/~tmm/gc/. ↩︎
Novello, Tiago, Vinícius da Silva, and Luiz Velho. ‘Visualization of Nil, Sol, and SL2(R) Geometries’. Computers & Graphics 91 (1 October 2020): 219–31. https://doi.org/10.1016/j.cag.2020.07.016. ↩︎
Savulescu, Julian, and Guy Kahane. ‘The Moral Obligation To Create Children With The Best Chance Of The Best Life’. Bioethics 23, no. 5 (June 2009): 274–90. https://doi.org/10.1111/j.1467-8519.2008.00687.x. ↩︎