Shanghai fires two gene-editing researchers after investigators find they failed to report safety findings before a child died in their trial
The city found an inadequate ethics review, flawed consent and money taken from the girl’s family, but no faked data. The case is a warning for custom gene-editing treatments worldwide.
Shanghai officials on Friday fired two scientists and punished several hospital staff after an investigation found they broke research rules in an experimental gene-editing treatment that killed a 6-year-old girl, according to the city task force’s findings as reported by China’s state media.
The task force found the team did not promptly report safety findings, left negative results out of a published paper and did not accurately disclose conflicts of interest. It found no faked data. It also found the hospital’s scientific and ethics reviews were inadequate and the consent process was flawed. Some staff had received about 1.06 million yuan (about $158,900) from the girl’s family, money since returned, China Daily reported.
The lead researcher, surnamed Qiu, and a colleague surnamed Yang were dismissed and barred for five years from leading or joining research projects or award reviews. Science magazine has identified the lead researcher as neuroscientist Zilong Qiu. The trial’s clinical lead at Xinhua Hospital was among others dismissed or demoted, and the medical school and two hospitals were ordered to make corrections.
What happened
The girl had Snijders Blok-Campeau syndrome, a rare disorder that slows a child’s development and has no effective treatment. Her family sought out the researchers for a custom therapy, China Daily reported. She was treated in March 2025 at Xinhua Hospital and died March 31 of thrombotic microangiopathy, a reaction in which tiny blood clots damage organs, which the hospital tied to the therapy.
Her death became public only in July 2026, when Science and Retraction Watch reported it. They found that a research paper the team published in Nature in February did not mention her, and that a monkey safety study finished a month before her treatment showed liver damage in all four animals tested, a report the hospital’s ethics committee had not reviewed.
Why it matters beyond China
The treatment used base editing, a more precise form of the CRISPR gene-editing tool that changes a single DNA letter instead of cutting the DNA. Doctors packed the editing instructions into modified viruses called AAVs, which are widely used in gene therapy, and injected them into her spinal fluid to reach the brain, Science reported.
Custom, one-patient gene editing is a fast-growing hope for children with rare diseases. In 2025, doctors at Children’s Hospital of Philadelphia used a custom base editor to treat an infant known as Baby KJ, Science noted. Shanghai’s health commission says it will now inspect clinical research on new biomedical technologies.
Source: China Daily: Shanghai releases investigation results on gene-editing research incident, Nov. 13, 2026; Xinhua (Chinese); *Science* and Retraction Watch, July 23, 2026.
- China Daily: Shanghai releases investigation results on gene-editing research incident (Nov. 13, 2026)
- Xinhua: 上海公布“交大医学院基因编辑研究事件”调查结果 (Nov. 13, 2026)
- Global Times: Shanghai probes gene-editing study after child’s death (Nov. 13, 2026)
- Science / Retraction Watch: Exclusive: Death of girl in Chinese gene-editing trial was never made public (July 23, 2026)