Who gets to edit the human genome?: Effective accelerationists
New to bioethics
The scream
Three hundred thousand children born with sickle cell every year. Most in sub-Saharan Africa. First pain crisis before second birthday. Bones on fire, organs swelling. Pediatric nurses identify it across a ward by the pitch of the scream.
December 2023: the FDA approved Casgevy. CRISPR-based. Functionally cures sickle cell. Cost: $2.2 million per patient. Germline editing eliminates the disease from the family line. One edit. Every descendant. Every year the committees deliberate, 300,000 more children are born into a disease we know how to prevent.
Off-target rates in current editors are lower than the spontaneous mutation rate in natural conception. Every child born through unassisted reproduction carries roughly sixty new mutations. The editing is more precise than the biology it modifies. The bioethicists demand perfection from the technology and accept imperfection from nature.
The sanctity of life camp raises consent. True: the embryo cannot consent to being edited. The embryo also cannot consent to being born with Huntington’s. Choosing to let a child inherit a fatal disease when you could prevent it is not respecting autonomy. It is outsourcing suffering. The Global South sovereignty advocates are right that if this becomes available only in wealthy countries, we will have created a biological aristocracy encoded in DNA. Our answer is not to slow the technology but to democratize it.
Where we concede ground: He Jiankui was reckless, and the accelerationist temperament produced him. That cost is real.
What would change our mind: If by 2030 the best editors still introduced more unintended changes than unassisted reproduction.
Read the full synthesis: Who gets to edit the human genome?