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Aug 05, 2026 10:00
A leading Chinese medical university, the School of Medicine at Shanghai Jiao Tong University, is investigating the death of a young girl during an experimental gene-editing trial conducted last year at its affiliated Xinhua Hospital and led by a renowned expert, Qiu Zilong.
According to a joint report by Science and Retraction Watch, the parents paid approximately 750,000 euros for the development of the treatment intended for their daughter, who suffered from the rare Snijders-Blok-Campeau syndrome, CNN reports. The parents claim that the doctors did not warn them of the risk of death and that they had been assured there would be “no safety catastrophe.”
The hospital’s ethics committee concluded that the death was “clearly linked” to the treatment, but the penalties were limited (a small fine imposed on the hospital and psychological counseling for a doctor), and the findings were not made public—even though the related research was published in "Nature" without mentioning the human clinical trial or the death. After discovering this earlier this year, the parents demanded an investigation and the retraction of the article. The university refused to retract it, but "Nature" has since added an editorial note and states that it is reviewing the manuscript.
This case has sparked anger and concern in China regarding ethical lapses in the rapidly expanding biotechnology sector, particularly since it involves renowned scientists at a prestigious university.
Experts highlight the structural risks of China’s “dual-track” system, in which researcher-initiated clinical trials are subject to less oversight, and hope that recent national regulations on innovative therapies will enforce greater transparency, safety, and accountability. There are concerns, however, that this scandal could lead either to a hasty tightening of regulations—which could hinder scientific research—or to persistent regulatory loopholes, which would undermine China’s position as a biotechnology superpower.
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