By Simone McCarthy, CNN
Beijing (CNN) — A top Chinese medical university is investigating the death of a young girl in an experimental gene-editing trial conducted by a leading expert at its affiliated hospital that has raised serious concerns about ethics in China’s booming biomedical industry.
Shanghai Jiaotong University School of Medicine said it has established a working group to “conduct a comprehensive investigation” into the clinical trial carried out last year in Xinhua Hospital and a related scientific paper.
The announcement came days after US-based Science magazine and science accountability publication Retraction Watch released a joint report detailing the botched clinical trial that was partially funded by the girl’s parents, who say they paid $860,000 for the development of the treatment.
The girl’s parents told the outlets that doctors didn’t warn them that their daughter could die and had hoped the treatment would correct a gene defect behind developmental delays they worried would affect her in later life.
The hospital’s ethics board concluded the girl’s death was “definitely related” to the treatment, but penalties were minor and the outcome was never made public by the doctors or their institutions, even as results from related research were published in the prestigious science journal Nature, the Science report revealed.
Now in the spotlight, the case has stoked outrage and concern in China especially after a tightening of rules in the wake of another scandal – the revelation in 2018 that babies had been born from embryos gene-edited by Chinese scientist He Jiankui.
The context of the latest clinical trial is vastly different: gene editing is an emerging form of gene therapy that aims to edit DNA or RNA sequences to repair or remove defective genes that cause a range of diseases in children and adults. Unlike gene-editing embryos, these changes aren’t passed to future generations.
Even still, “this case is much more worrying than (that of He Jiankui) … because this case is well-established scientists in one of China’s most prestigious universities,” said Joy Zhang, director of the Centre for Global Science and Epistemic Justice at the University of Kent in the United Kingdom.
He, by contrast, was a little-known, entrepreneur scientist working at a recently established institution when he became the first and only known researcher to engineer human embryos for implantation. The move shocked the global scientific community and landed him in jail for three years.
Since then, “there’s been a series of government initiatives and commitment of how they want to strengthen ethics … but obviously this is not the case,” Zhang said.
Global health expert Yanzhong Huang said that seeing the appearance of “similar ethical failures years later suggests persistent gaps in regulation in terms of transparency, safety and accountability.”
“If you look at this case, it’s full of mistakes, loopholes, and irregularities … so in that sense, it is very unique, but in the meantime I’m afraid in this environment of Chinese biomedical boom this may potentially be the tip of the iceberg,” said Huang, a senior fellow at the Council on Foreign Relations in the US.
A botched trial
Gene therapy, an umbrella term that includes developing treatments using gene-editing, has become a driver of China’s rapidly expanding biotechnology sector, where researchers are racing with peers in the US and elsewhere for medical breakthroughs.
That research is boosted by the country’s so-called dual-track regulatory system, experts say, which allows for therapies to be tested for the first time in humans through “investigator-initiated trials.”
These small-scale clinical trials generally undergo less oversight than the traditional approval pathway for a green light. Similar models exist in other countries and are seen as important to accelerating breakthroughs and administering life-saving treatments especially for rare diseases, where there is little commercial incentive for research. But they may also come with risks.
It was against this backdrop the Shanghai couple who shared their story with Science undertook a journey to get treatment for their young daughter.
The girl had been diagnosed with a rare gene defect that produces a neurodevelopmental condition known as Snijders Blok-Campeau syndrome, Science reported.
The disease can cause intellectual deficits as well as severe physical symptoms. While the girl showed symptoms that were milder than others, her parents decided to explore specialized gene therapy, according to Science.
They connected with Qiu Zilong, a prominent neuroscientist at the Shanghai Jiaotong University Medical School’s Songjiang Research Institute. Qiu was known for research working with a cutting-edge technique known as base editing to make custom treatments for children with rare diseases.
Under a treatment plan he developed for the family, the girl would be the first person in the world to receive a gene-editing therapy directed at the brain, according to Science. The family received an assurance from Qiu that there would be “no safety catastrophes,” according to Science, which reviewed recordings of Qiu made by the family.
Preparations included preclinical trials in mice and monkeys, which Qui told the family proved that clinical trials should go ahead, Science reported.
In early 2025, the hospital’s ethics committee approved the clinical trial, before the final results of one of the preclinical studies on monkeys was released, Science reported. Other results were “unconvincing,” according to a scientist who reviewed them for Science.
Several days after the girl’s treatment last March, she developed a high fever and signs of kidney damage, was rushed to the ICU and died. CNN has been unable to independently verify the account.
A clinical trial listing associated with the experimental treatment has not been updated since last year. When reached by phone by CNN, one of the lead doctors for the trial, Yu Yongguo, declined to comment and hung up. Qiu did not respond to an emailed interview request. Repeated calls to the medical university’s publicity department went unanswered.
In September 2025, a Shanghai district health department fined the hospital approximately $3,600 for failing to properly oversee the trial and not registering it as commercially sponsored research on the national database, Science reported, while Yu was required by the hospital to receive verbal counseling, the family said. CNN has also approached the hospital for comment.
It wasn’t until this past February, when the bereaved parents learned that Nature had published a paper from Qiu that they demanded action from the university. The paper described research on the feasibility of using gene-editing to correct the mutation the caused their daughter’s disorder but did not mention a human trial nor their daughter’s death.
The couple called for an investigation and a retraction of the paper, telling Science they were concerned the paper could give other parents false hope. The university denied the request, Science reported.
In a statement to CNN, Nature’s deputy editor Victoria Aranda said the journal was investigating concerns that had been raised around the manuscript, was in touch with the researchers and would take “take editorial action as appropriate” following their probe.
“No information that a human trial was planned or ongoing was ever shared with us, nor was any data related to human therapy shared or mentioned in any version of the submitted study,” Aranda said. “We were shocked to hear of the death of a child in the recent clinical trial and of the circumstances around that trial.”
An editor’s note was added to the Nature paper on July 29. A Chinese-language press announcement for its publication has been removed from the Xinhua Hospital website, CNN found.
‘Safeguards in place’
The scandal comes as Chinese regulators have been scrambling to keep pace with the surge of innovation and investment into advanced therapies.
Since 2015, investigator-initiated trials for cell and gene therapy products have proliferated, enrolling over 30,000 participants in more than a thousand trials, twice the number of participants in investigational drug trials overseen by a national regulatory body, according to a 2025 analysis by Chinese researchers.
In May, Beijing rolled out new rules specifically for new biomedical technologies, plugging what observers said was a gap in how the development of advanced therapies, including personalized treatments, are controlled.
The new rules establish a national regulatory framework governing such trials, including investigator‑initiated clinical trials like the one carried out at Xinhua Hospital, centralizing oversight and requiring the reporting of adverse reactions. They are also seen as creating a clearer pathway to commercializing these treatments.
“It’s speculation to say if this governance would have made a difference (in this case), but one would hope that … with such safeguards in place … the institution itself might have exercised a lot more care,” said Calvin Ho, an associate professor with Monash Law School in Australia.
Instead, the trial took place at a time when there “wasn’t clear governance regimes in place,” Ho said, adding that balancing innovation and patient protection in these fields is a challenge for governments across the world in this moment.
In China, it’s possible that the case could spark further tightening and oversight in a knee-jerk response that stymies science, observers said. But Beijing is not just balancing innovation and safety, but also global competition – and may not want to slow down.
China’s share of global clinical trial starts grew from 1% in 2009 to 32% in 2025 – nearly matching the US’ 35%, according to a recent survey of US leaders in industry and academia conducted by Cure Innovation Index.
Chinese institutions have the capabilities and are doing cutting edge work, said Huang.
“But at the same time that we are talking about the rise of China as a biotech superpower, we should not forget the other side of the story – the regulatory, ethical challenges that might constitute a serious stumbling block for Chinese science.”
The-CNN-Wire™ & © 2026 Cable News Network, Inc., a Warner Bros. Discovery Company. All rights reserved.
CNN’s Yong Xiong contributed to this report.
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