Science and Retraction Watch have published an in-depth investigation into the case of a young girl in China who died after being given an experimental gene therapy.
(Image credit: MARK GARLICK/SCIENCE PHOTO LIBRARY via Getty Images)
A 6-year-old girl was given a first-of-its-kind gene therapy in a hospital in China for a nonlethal condition. Within a week, she was dead.
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.
Nicoletta Lanese is the health channel editor at Live Science and was previously a news editor and staff writer at the site. She is a recipient of the 2026 AHCJ International Health Study Fellowship, with a project focused on antibiotic stewardship practices in Japan and the U.S. They hold a graduate certificate in science communication from UC Santa Cruz and degrees in neuroscience and dance from the University of Florida. Beyond Live Science, Lanese’s work has appeared in The Scientist, Science News, the Mercury News, Mongabay and Stanford Medicine Magazine, among other outlets. Based in NYC, she also remains involved in dance and performs in local choreographers’ work.
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