Exclusive: death of girl in Chinese gene-editing trial was never made public
The parents felt they were in good hands. Xinhua Hospital, which is affiliated with the Shanghai Jiao Tong University School of Medicine, was acclaimed for its pediatrics department. It was the first Chinese institution to perform open heart surgery on infants, and the first in the country to separate conjoined twins. If all went well, the hospital would make history once again. The girl would be the first person in the world to receive a gene-editing therapy directed at the brain. It would rewrite the mutated gene in her neurons, restoring the needed DNA base so she could make a vital protein.
Leading the effort was Zilong Qiu, a neuroscientist at the university’s brain center, the Songjiang Research Institute. At the time, in late March 2025, Qiu was one of several researchers around the world vying to push base editors—a more precise form of the powerful gene editor CRISPR—into custom treatments for children with rare diseases. One month earlier, KJ Muldoon, an infant with a life-threatening metabolic disorder, had quietly received his first intravenous infusion of one such treatment at the Children’s Hospital of Philadelphia.
