Patient death in China gene-editing trial draws fire: Journal

A six-year-old girl died in March 2025 after receiving an experimental gene-editing treatment in a clinical trial at Shanghai Xinhua Hospital, Science Journal reported, raising questions about regulatory oversight in China. The child, who had a genetic mutation affecting neurodevelopment, died days after the treatment from a severe immune reaction linked to the therapy, the magazine reported, citing documents and accounts from the girl's parents. The death had not been previously disclosed and was omitted from a Nature paper published earlier in 2026 detailing animal studies of the base-editing therapy, according to Science. The paper also left out kidney and liver issues observed in earlier monkey experiments. Qiu Zilong, a neuroscientist at Shanghai Jiao Tong University School of Medicine who led the therapy development, and Dr. Yongguo Yu, who oversaw the study, did not respond to requests for comment. The case highlights the opaque nature of investigator-initiated trials in China, where researchers test novel therapies after local review without national drug regulator approval. Such studies have surged 11-fold from 2015 to 2023 to top 1,000. The hospital was fined about US$3,600 and Yu received verbal counseling, while the parents, who contributed US$860,000 to the research, were offered no compensation.