A top Chinese medical university is investigating the death of a young girl in an experimental gene-editing trial conducted by a leading expert at its affiliated hospital. The trial, which was partially funded by the girl’s parents, was intended to treat a rare gene defect that produces a neurodevelopmental condition known as Snijders Blok-Campeau syndrome.
Concerns About Ethics
The girl’s parents paid $860,000 for the development of the treatment, which was administered at Xinhua Hospital in Shanghai. However, the hospital’s ethics board concluded that the girl’s death was ‘definitely related’ to the treatment, and the outcome was never made public by the doctors or their institutions.
The case has stoked outrage and concern in China, especially after a tightening of rules in the wake of another scandal involving gene-edited embryos. Global health experts have expressed concerns about the lack of transparency and accountability in China’s biomedical industry, which has been driven by a surge of innovation and investment.
The incident has also raised questions about the use of gene-editing therapies, which aim to edit DNA or RNA sequences to repair or remove defective genes that cause a range of diseases. While these therapies have shown promise in treating rare diseases, they also carry significant risks, including the potential for unintended consequences and long-term effects.
Original reporting: El Paso News (HLL/CB) — read the source article.
