Couple pay >$800k for a gene-editing therapy for their daughter. She died.
Points and comments are a snapshot, not live.
A 6-year-old girl died in a Chinese gene-editing trial that was not publicly reported.
Mei, a 6-year-old with a CHD3 mutation causing Snijders Blok-Campeau syndrome, received an experimental base-editing therapy at Xinhua Hospital in Shanghai in March 2025. Her parents paid over $860,000 for the treatment. Seven days after viruses carrying the base editor were infused into her spinal fluid, she died from a severe immune reaction. The trial proceeded under a regulatory provision bypassing national approval. Experts say risks were downplayed and safety signals in animal studies were overlooked. The hospital paid a modest fine; the researcher was not publicly sanctioned.
What commenters are saying
Commenters are outraged at the ethical breaches, particularly the downplaying of risks and the apparent lack of accountability. Many draw parallels to the TGN1412 trial and the Jesse Gelsinger case. Some criticize the parents for pursuing a risky therapy for a non-fatal condition, while others focus on the researchers' failure to communicate risks and the regulatory loophole. A few commenters note the irony of the paper being celebrated while the child was already dead.