Six-year-old “Mei” had Snijders Blok-Campeau syndrome, a disorder diagnosed in just 237 people worldwide, marked by developmental delays and simple speech. In March 2025, doctors at Shanghai’s Xinhua Hospital infused trillions of viruses carrying an experimental base-editing therapy into her spinal fluid to correct the mutation. Seven days later she died of a severe immune reaction — a death never made public, as Science and Retraction Watch reveal in a joint investigation by Brendan Borrell.
A trial with few guardrails
The trial, led by neuroscientist Zilong Qiu, ran as an “investigator-initiated trial” — a fast-growing pathway letting hospitals test novel therapies with only local ethics review, bypassing China’s national regulator. Mei’s parents paid over $800,000 from savings and relatives but weren’t adequately informed of the risks. Qiu later published a related Nature paper on base-editing in mice without mentioning her death or the family’s funding.
Steven Gray, a gene therapy researcher at UT Southwestern Medical Center, reviewed the case and said bluntly: “This shouldn’t have gone to trial.” The episode, echoing He Jiankui’s 2018 CRISPR-baby scandal, tests whether China’s booming biotech sector can police itself while racing to become a global biomedical power.
Related on the SLP
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Related on the SLP
Vindication for He Jiankui? Seven years after the Chinese scientist’s pioneering work landed him in jail, scientists and ethicists are exploring the inevitably of gene edited babies
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