Child’s death in China gene-editing trial sparks ethics scandal

A six-year-old Chinese girl died in March 2025 after receiving an experimental gene-editing therapy at Xinhua Hospital in Shanghai, a death that was concealed from a subsequent paper published in Nature Springer Nature Group and is now prompting widespread calls for reform of China's biomedical research oversight.

The Case

The girl, identified by the pseudonym Mei, had a rare mutation in her CHD3 gene associated with Snijders Blok-Campeau syndrome, a condition causing moderate developmental delays and language difficulties. Her condition was stable and not life-threatening.foreignpolicy+1

Neuroscientist Zilong Qiu, affiliated with Shanghai Jiao Tong University, proposed treating Mei with base editing, a cutting-edge gene-editing technique. Her family spent more than $860,000 on the experimental treatment, including payments directed to individual researchers — with more than $130,000 sent to a single team member.nypost+1

A joint investigation by Science and Retraction Watch, published on July 23, revealed that animal trials had already raised alarming safety concerns. Four monkeys subjected to the therapy exhibited moderate to severe liver damage before Mei's treatment proceeded, and one showed signs of thrombotic microangiopathy — the same condition that ultimately killed Mei. Experts consulted by Science described images of monkey brain scans used to justify the trial as "completely unconvincing."nypost

Mei died the day after being admitted to the ICU following a persistent fever and kidney distress. An emergency ethics board meeting at the hospital determined that thrombotic microangiopathy caused by the treatment was responsible for her death.nypost

The Cover-Up

Qiu published a paper in Nature in February 2026 describing the gene-editing research but omitted any mention of Mei or her death. When Mei's parents asked Qiu to retract the paper, he initially agreed but later ceased communication. Nature stated that the ethical issues raised were "outside our purview" and that the university should handle the matter.foreignpolicy+1

"This trial should never have taken place," said Steven Gray of the University of Texas Southwestern, a specialist in developing viruses for gene therapies.nypost

The hospital received a fine of approximately $3,600, and the doctor who assured the family of the treatment's safety received only verbal counseling.nypost

Broader Fallout

The case has drawn comparisons to the 2018 He Jiankui scandal, in which a scientist was imprisoned for editing human embryos. Qiu was among more than 100 Chinese scientists who signed an open letter condemning He at the time, writing that He "completely ignored the principles of biomedical ethics."foreignpolicy

Shanghai Jiao Tong University announced plans for a "comprehensive investigation" and pledged to take "serious action" based on the findings. China's biotech industry fears a regulatory backlash. "I hope this tragedy does not have a lasting negative impact on China's investigator-initiated clinical-research system, but there is a real risk of a regulatory backlash," said Wang Haoran, chief executive of Neoland Biosciences.scmp+1

Foreign Policy's James Palmer noted that the story has received extensive coverage in Chinese media but has not yet appeared in the most official outlets, "suggesting that authorities are still deciding what the official response should be."foreignpolicy