A prominent Chinese scientist is under investigation following the death of a six-year-old girl who received an experimental gene-editing therapy intended to correct a neurodevelopmental genetic mutation. The child, named Mei, died days after the treatment was administered in March last year, according to a report based on a joint inquiry by a scientific journal and Retractoion Watch, an organization that tracks retracted studies.
The clinical trial was led by neuroscientist Qiu Zilong of Shanghai Jiao Tong University’s School of Medicine. Qiu’s research focuses on adapting base editing—a gene-editing technique—to treat rare pediatric diseases. The therapy involved infusing trillions of viruses carrying the base editor into the girl’s spinal fluid. Seven days after the infusion, Mei succumbed to a severe immune reaction linked to the treatment, according to investigators.
Xinhua Hospital, affiliated with Shanghai Jiao Tong University, where the trial was conducted, was fined approximately 24,000 yuan (about HK$27,800) by local health authorities last September. At that time, no public disciplinary actions were taken against Qiu. In response to the recent report, the university’s medical school announced it had formed a special committee to investigate both a paper authored by Qiu and the clinical study undertaken at the hospital. The school emphasized its commitment to research integrity and stated it opposes any medical research that violates ethical guidelines and regulations.
Documents provided by Mei’s parents revealed that the trial was partially funded by around US$860,000 sourced from their personal savings and medication expenses. The hospital permitted the trial to proceed under a regulatory provision that exempts certain studies from national regulatory approval. Mei’s parents expressed frustration over what they described as a lack of accountability from the researchers and institutions involved, saying they decided to come forward because recent revelations about missing safeguards altered their perception of the project.
The report also noted that the fatal outcome was not disclosed in a Nature article published earlier this year that detailed animal trials of the gene-editing therapy. Furthermore, it was alleged that the paper omitted incidents of liver and kidney complications observed in monkeys given the experimental treatment.
Qiu declined to comment on the investigation, stating that official responses would come from the medical school’s leadership. Shanghai Jiao Tong University has been approached for comment but had not provided a statement.
This case has drawn parallels to a previous high-profile gene-editing controversy in China. In 2018, scientist He Jiankui sparked international condemnation after creating the world’s first gene-edited babies, resulting in a three-year prison sentence for violating medical laws. The current investigation highlights ongoing concerns about oversight and ethics in experimental gene-editing research within the country.