Her death was never publicly disclosed by the scientists who developed and administered her experimental gene therapy. But now, more than a year after her death, her parents are telling her story in the hope that others will be spared the same fate.
Mei's trial was led by Zilong Qiu, a neuroscientist at the university's brain center. Live Science has contacted Qiu for comment.
Mei's parents had sought further tests after their daughter was diagnosed with global developmental delay in 2023; this broad diagnosis is given to young children who show delays in several areas, such as speech and motor skills. Genetic sequencing following her diagnosis revealed she had the syndrome.
Jason worried about her future, though, anticipating that she'd continue to trail behind in school and may never live independently. On WeChat (the instant messaging, social media and mobile payment app), Jason and Linda joined a group of parents of kids with autism and similar disorders. There, they learned about Qiu, the neuroscientist, who has a gene-therapy company called Lanqi Xintu Gene Technology. Qiu had been developing a gene therapy for Rett syndrome, another genetic disorder that disrupts brain development.
Qiu planned to use a base editor, a CRISPR-based approach that swaps out just one letter in DNA's code for another. (The technique was famously used in the case of a U.S.-based baby, called KJ, whose life-threatening genetic disease was successfully treated.)
Xinhua Hospital, affiliated with the Shanghai Jiao Tong University School of Medicine, treated Mei. (Image credit: c1a1p1c1o1m1 via Getty Images)
Jason and Linda agreed to the plan. They would ultimately put the equivalent of $860,000 toward the cost of developing, testing and deploying the therapy; those costs included informal payments made directly to various members of the research team. Charging for an unproven therapy is forbidden under Chinese law, but Qiu explained this away by saying the parents were paying into his gene-therapy company, which then paid for the procedure.
The next month, a toxicology study conducted by the team found that four monkeys given the treatment developed moderate to severe liver damage, and one also had kidney damage. This should have prompted additional safety studies, experts told Science, and hinted that the therapy was triggering a dangerous inflammatory response — a known risk of virus-based gene therapies.
On March 24, 2025, after giving her a steroid to dampen potential immune reactions, Dr. Yongguo Yu injected gene therapy-laden viruses into Mei's spinal fluid. Although some virus-based gene therapies in the U.S. can be given with steroids, as of late, doctors often opt for more aggressive immune-suppressing drugs for safety.
The hospital determined her death was directly related to the treatment and caused by thrombotic microangiopathy. This is an immune reaction that causes blood clots and can arise from virus-based gene therapies.
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They also sent a letter to Nature after the publication; at the time, the journal said that the ethical issues raised "fall outside our purview in terms of data integrity" and that the matter should be handled by the university.
You can read the full investigation by Brendan Borrell at Science, along with a breakdown of the top four takeaways from the case. In particular, Mei's death raises questions about China's regulations around experimental therapies and human clinical trials, especially in the wake of the infamous "CRISPR baby" cases that purportedly prompted the country to tighten its restrictions around gene editing.
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