Girl’s death in China reveals human cost of unregulated science

A six-year-old girl in China died in March 2025 after receiving what researchers said they believed was the world’s first base-editing therapy directed at the brain, according to an investigation by Science and Retraction Watch.

The investigation has raised important questions about the oversight of an experimental personalised gene-editing trial and the way the researchers and their institutions communicated their choices.

The girl had Snijders Blok-Campeau syndrome, a rare neurodevelopmental disorder caused by a mutation in the CHD3 gene. Although the condition affects intellectual development and its severity varies widely, most people with the condition live full lives.

But that such a case could still clear the bar for an unprecedented, high-risk brain intervention says something about a society uneasy with disability and enamoured of techno-scientific interventions.

The girl’s parents sought the experimental treatment after learning of research led by neuroscientist Zilong Qiu at the Shanghai Jiao Tong University.