The information revealed about an experimental gene editing study carried out in China started an ethical and safety debate in the scientific world.
According to joint research by Science and Retraction Watch, the 6-year-old girl, nicknamed “Mei” to protect her family’s privacy, was taken to an experimental treatment at Xinhua Hospital in Shanghai in March 2025 for the treatment of a genetic disorder.
The study was led by neuroscientist Zilong Qiu. Researchers aimed to correct the genetic mutation in the cells of the child’s brain by using the precise gene editing method known as “base editing”.
If the treatment is successful, Mei would be the first person in the world to receive this type of gene editing treatment that directly targets the brain.
HE DIED HIS LIFE 7 DAYS AFTER TREATMENT
On March 24, 2025, doctors introduced a massive amount of viral vector carrying the gene editor’s genetic instructions into the child’s spinal fluid.
However, in the days after the treatment, Mei’s health condition rapidly deteriorated. First, his fever rose, then serious problems arose in his kidney function and the platelet level in his blood dropped dangerously.
According to documents obtained by Science, the child died just 7 days after the treatment was administered, following a serious immune reaction related to the treatment.
A later evaluation by a board at the hospital stated that there was a connection between the experimental treatment and the child’s death.
DANGER SIGNAL IN MONKEY EXPERIMENTS
One of the most controversial points of the research was the findings that emerged in animal studies conducted before human experiments.
In the toxicology report dated February 2025, it was reported that all four monkeys receiving the treatment had moderate or severe liver damage.
According to some independent experts who spoke to Science, after these results, additional safety studies with lower doses needed to be conducted before starting human trials.
Gene therapy expert Steven Gray said regarding the study that the experiment should not be conducted on humans at this stage.
THE CLAIM THAT THE FAMILY PAID MILLIONS OF YUAN
Another issue that attracted attention in the research was the financing of the treatment.
Although it was stated in the informed consent document of the study that no additional fee would be charged from the family due to the experiment and that the expenses would be covered by the sponsor company, according to the information provided by Science, the family provided financing of approximately 6 million yuan, or hundreds of thousands of dollars at the exchange rate of the period, for studies related to the research.
According to Chinese legislation, it is prohibited to charge a patient for an unproven experimental treatment.
DEATH WAS NOT ANNOUNCED TO THE PUBLIC
After Mei’s death, the incident was not made public for a long time.
According to Science’s investigation, the clinical trial’s registration was not updated for more than a year. The researchers later published the results of animal experiments linked to the study in Nature in early 2026, but the article made no mention of Mei’s treatment and death.
In its statement to Science, Nature stated that it was not aware of these problems with the clinical trial before the article was published.
THE FAMILY IS NOW ASKING FOR ACCOUNTABILITY
Mei’s parents said they decided to go public about their daughter’s experience because they felt there was not enough accountability from researchers and institutions.
The family stated that they learned the extent of the security problems before the treatment only after their daughter’s death.
Seven experts from the fields of genetics, virology and bioethics interviewed by Science within the scope of the file also expressed serious concerns about various stages of the study.
Experts especially criticized that the safety signals in animal experiments were not taken into account sufficiently, there were problems in transferring the risks to the family, and human experiments were started even though the probability of success of the treatment was low.
While the incident brought China’s control mechanisms in biotechnology and gene editing studies into question again, it also raised new questions about the extent to which the regulations introduced after the He Jiankui scandal, which led to the birth of genetically modified babies in 2018, were effective in practice.
