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The Hindu·4 min read·hard

Girl’s death in China: Does gene editing therapy need better regulation? | In Focus Podcast

Z
Zubeda Hamid
Girl’s death in China: Does gene editing therapy need better regulation? | In Focus Podcast
✦AI Summary

The death of a six-year-old girl in China following experimental gene editing therapy has sparked a global debate on medical ethics and regulation. Experts are questioning the oversight of experimental treatments and the risks associated with base editing in clinical settings.

Why it matters

It raises critical questions about the safety, ethics, and regulatory gaps in emerging gene-editing technologies and patient consent.

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The scientific world was rocked last month, when the case of a six-year-old girl who died in China, surfaced. The child was believed to have Snijders Blok-Campeau syndrome, a rare neurodevelopmental disorder caused by a mutation in the CHD3 gene. The condition affects intellectual development, but its severity varies widely. The girl’s parents sought an experimental treatment led by neuroscientist Zilong Qiu at the Shanghai Jiao Tong University.

What happened then was the child underwent base editing therapy, a specialised form of gene editing therapy. The therapy was directed at her brain to correct a genetic mutation in her brain cells. The parents are believed to have financed much of the therapy’s development. Within days of the therapy, the child developed a fever and kidney damage, and died a week later.

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