Who gets to edit the human genome?: Global South sovereignty
The price tag
Vertex priced Casgevy at $2.2 million per patient. The disease: sickle cell. The patients: Nigeria, DRC, India, Tanzania. The Nobel: Stockholm. The patent: Boston. The patients are in Kano.
We have seen this. Antiretrovirals at $10,000 per year while millions died, until Indian generics broke the monopoly and the price fell to $350. COVID vaccines developed with public funding, distributed first to countries that could afford advance purchase agreements. Every medical technology arrives in the Global South one generation after it becomes routine in the North.
The governance debate is being held in the wrong rooms. Nuffield is in London. WHO advisory meets in Geneva. National Academies in Washington. When the bioethicists discuss permissibility, African and South Asian voices are advisory at best. We are consulted. We are not deciding. The ethical framework is being written by the same civilization that patented the technology, and the consultation process is sophisticated enough to look inclusive without transferring actual power.
The effective accelerationists say move faster. Faster for whom? If germline editing arrives in 2030, it arrives in Boston, London, and Singapore — not Lagos, Dhaka, or Lima. Not because the technology is expensive but because the IP regimes and clinical infrastructure channel innovation through markets that can pay. Democratizing technology while maintaining patent monopolies is a contradiction nobody has resolved.
What we want is not complicated. Technology transfer provisions. Compulsory licensing for diseases that disproportionately affect us. Regulatory infrastructure funded as part of any moratorium. A governance body headquartered somewhere that is not Geneva.
Where we concede ground: We have not built the regulatory capacity we demand sovereignty to exercise.
What would change our mind: An international body with binding authority, majority Global South representation, mandatory tech transfer, and enforcement power.
Read the full synthesis: Who gets to edit the human genome?