2026-09-08 · contested story
Two children died from gene therapies in China: where the field goes next
In March 2025, a six-year-old girl in Shanghai—referred to as 'Mei' by her family—died seven days after receiving an experimental base-editing gene therapy injected into her spinal fluid to correct a mutation causing Snijders Blok-Campeau syndrome, a non-fatal neurodevelopmental condition. Her parents had paid roughly $860,000 to fund the treatment developed by neuroscientist Zilong Qiu at Shanghai Jiao Tong University's affiliated Xinhua Hospital. The death was never publicly disclosed, even as Qiu's team published related preclinical animal work in Nature without mentioning the child. Weeks after Science and Retraction Watch broke the story in July 2026, a second death emerged: a boy with Duchenne muscular dystrophy died in August 2025 in a CRISPR trial run by biotech firm HuidaGene. Both deaths occurred under China's 'investigator-initiated trial' (IIT) pathway, which allows hospitals to test therapies with less regulatory oversight.
How each side frames it
left
"Not because gene editing itself has failed, but because of allegations that a patient's death was never fully disclosed to the scientific community."
"The story raises an important question. How much transparency is needed when scientists are testing some of the world's most powerful medical technologies?"
"the girl's family had contributed roughly around 800,000 US dollars towards the development of the therapy, highlighting another emerging feature of highly personalized medicine, which is its enormous cost."
"Now, experimental treatments do carry risks. Every early-stage clinical trial involves uncertainty, and unfortunately, not every patient survives. That by itself is not what has shocked the scientific community."
center
"A death in a gene therapy trial is not, by itself, a verdict on gene therapy. What matters is how the field handles that death."
"This shouldn't have gone to trial"
"in this environment of Chinese biomedical boom this may potentially be the tip of the iceberg"
"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"
"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."
right
"The report from Scienceis making waves in the research world, raising questions about research oversight and capitalizing on desperate families to fund shaky science."
"6-year-old girl dies after parents paid $860K for experimental therapy"
"Zilong Qiu, who led the research for Mei's treatment, appeared to be obsessed with publishing research in a prestigious journal, hoping hers would be 'the first brain-directed gene-editing therapy.'"
"The hospital was fined about $3,600, and the doctor who told the family it was 'relatively safe' was given 'verbal counseling.'"
"China now conducts thousands of clinical trials annually, but the American public has almost no visibility into how these trials are run, how data are collected, or whether adverse events are fully disclosed"
What each side left out
The left left out — covered by the Nature & New York Post & SBS
- The toxicology study showing all four monkeys sustained liver damage before the girl was treated
- The specific trivial penalties (fine, verbal counseling)
- The second death (Duchenne/HuidaGene boy)
The left left out — covered by the Nature & Forbes
- Historical comparison to Jesse Gelsinger and prior gene-therapy fatalities
The center left out — covered by the Yahoo/PharmaVoice
- U.S. congressional (Republican) letter demanding FDA scrutiny of Chinese trial data
The center left out — covered by the New York Post
- The direct $130,000 payment to a researcher overseeing a lab
The right left out — covered by the Forbes & Gizmodo & The Damage Report
- The positive framing of gene therapy's proven successes (30+ approvals, sickle cell, Baby KJ)
- The technical explanation of base editing and AAV delivery mechanisms
The right left out — covered by the Yahoo/PharmaVoice
- Third death (RiboX CAR-T patient in his 50s) which the company says FDA was aware of
What's actually true?
[verified] A six-year-old girl died in March 2025, seven days after receiving an experimental gene-editing therapy injected into her spinal fluid at Xinhua Hospital in Shanghai.
[verified] The girl's parents paid $860,000 to fund the development of the treatment.
[verified] The girl's death was never publicly disclosed, even though Qiu's team published related preclinical animal studies in Nature without mentioning her.
[verified] A toxicology study in monkeys showed all four animals sustained liver damage from the treatment before it was given to the girl.
[verified] A second child, a boy with Duchenne muscular dystrophy, died in August 2025 in a CRISPR gene-editing trial run by HuidaGene; he was the fourth and final participant and received a higher dose than previous participants.
[verified] Both deaths occurred under China's investigator-initiated trial (IIT) pathway, which allows hospitals to test therapies with less regulatory oversight.
[verified] The hospital's ethics board concluded the girl's death was 'definitely related' to the treatment.
[verified] The hospital was fined about $3,600 and the doctor who told the family it was 'relatively safe' was given 'verbal counseling.'
The narrative clash
Whether the girl's death was due to inherent trial risk vs. a preventable, avoidable trial that should not have proceeded
Left: Now, experimental treatments do carry risks. Every early-stage clinical trial involves uncertainty, and unfortunately, not every patient survives. That by itself is not what has shocked the scientific community.
Right: Her treatment went forward even when experts say success was unlikely, animal studies showed red flags for safety, and doctors downplayed risks — including of death
Whether the RiboX death was concealed from regulators
Left: In the third case, the patient died in March 2026, yet in early August 2026 the FDA reportedly cleared the therapy to begin clinical trials in the United States — without the company ever having publicly reported the death.
Right: The company involved in the third case, RiboX, said the FDA was aware of the death, which was included as part of its IND submission
15 sources analyzed
The Damage Report CNN Nature New York Post Charlie Kirk Gizmodo Yahoo! Search Forbes STAT News South China Morning Post Science (AAAS) Bloomberg Times Higher Education Live Science Seoul Broadcasting System