The death of a six-year-old girl who was taking part in a clinical trial has raised troubling questions for scientists in China about ethical oversight and transparency in biomedical research.
The child died in March 2025 after receiving gene-editing therapy in Shanghai but the incident was never reported publicly, despite accounts of the high-profile experiment being featured in prestigious journals.
An investigation by Science and Retraction Watch has revealed that the girl received gene-editing therapy to correct a genetic mutation in her brain impacting her cognitive development.
The clinical trial was conducted at Shanghai Xinhua Hospital, which is affiliated with the Shanghai Jiao Tong University School of Medicine. The child was the first person in the world to receive gene-editing therapy designed to target the brain.
The experimental treatment, developed by prominent neuroscientist Zilong Qiu of the university’s Songjiang Research Institute, involved infusing trillions of viruses into the fluid at the base of the girl’s spine. But she had a severe reaction to the treatment and died within a week.
