Who gets to edit the human genome?: The Story

The video

November 2018. He Jiankui uploaded a YouTube video announcing he had edited the genomes of two human embryos using CRISPR-Cas9. Twin girls, Lulu and Nana. HIV resistance, he claimed. The scientific community reacted as if someone had detonated a device everyone knew was buildable but assumed no one would build yet. He went to prison for three years. He emerged in 2022 and opened a new laboratory in Wuhan.

The tool is an alien artifact hiding in plain sight. Jennifer Doudna and Emmanuelle Charpentier adapted it from a bacterial immune system in 2012 and shared the Nobel Prize in 2020. It locates a specific DNA sequence in three billion base pairs of human genetic code, cuts it, and replaces it with something else. A basic CRISPR kit costs less than a decent laptop.

Two different edits

The public conflates what the science separates. Somatic therapy edits a living person’s cells — changes die with them. Germline editing alters embryos — changes enter the gene pool permanently, inherited by descendants who were never consulted. Somatic is already in clinics: the FDA approved the first CRISPR treatment for sickle cell in December 2023. Germline is where the argument lives.

The vacuum

No international body has binding authority. The WHO issued recommendations. They are recommendations. Seventy countries have restrictions ranging from bans to polite suggestions. The country with the lowest regulatory floor sets the ceiling for the species.

Governance frameworks exist — the bioethicists wrote them — but they will be ignored by the first nation that decides genetic competitiveness matters more than norms. Meanwhile, three hundred thousand children are born with sickle cell disease every year, and each year the committees deliberate is a year counted in suffering the effective accelerationists find unconscionable. The Nobel was awarded in Stockholm. The patent is held in Boston. The patients are in Kano — and the Global South sovereignty advocates see the pattern repeating: Western institutions set the ethics while Western companies capture the value. At the deepest level, the embryo is the patient, and the patient cannot consent — a premise the sanctity of life tradition refuses to negotiate.

He Jiankui’s three-year sentence was the shock absorber — the system’s attempt to register the magnitude of what happened. Five years from now, if a clinic in a country with minimal oversight offers germline edits for disease resistance and cognitive enhancement on the same menu, the committees will discover whether their work was governance or autobiography.

Perspectives:
- Bioethicists
- Effective accelerationists
- Global South sovereignty
- Sanctity of life