Girl's Death in Gene-Editing Trial Sparks Ethics Probe in China

A leading Chinese medical university is probing the death of a young girl during an experimental gene-editing trial, sparking serious ethical questions within China's booming biomedical industry. Shanghai Jiaotong University School of Medicine announced it has formed a working group to thoroughly investigate the clinical trial conducted last year at its affiliated Xinhua Hospital and a related scientific paper.

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conduct a comprehensive investigation

The investigation follows a joint report by Science magazine and Retraction Watch, which detailed the flawed clinical trial. The girl's parents revealed they had paid $860,000 for the treatment's development, asserting that doctors failed to inform them of the potential for a fatal outcome. They had hoped the experimental therapy would address a gene defect causing developmental delays.

While the hospital's ethics board determined the girl's death was "definitely related" to the treatment, the penalties were reportedly minor, and the outcome was not publicly disclosed by the medical team or institutions. This lack of transparency occurred even as research findings from the trial were published in the journal Nature.

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doctors didn’t warn them that their daughter could die

The case has ignited public outrage and concern in China, particularly after a 2018 scandal involving gene-edited babies. Unlike embryo editing, this trial involved somatic gene therapy, aiming to correct genetic defects without passing changes to future generations. However, experts like Joy Zhang of the University of Kent expressed greater worry, noting that "this case is much more worrying than (that of He Jiankui) … because this case is well-established scientists in one of China’s most prestigious universities."

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definitely related

Global health expert Yanzhong Huang pointed to persistent regulatory gaps in transparency, safety, and accountability, stating that "similar ethical failures years later suggests persistent gaps in regulation." He described the case as "full of mistakes, loopholes, and irregularities."

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this case is much more worrying than (that of He Jiankui) … because this case is well-established scientists in one of China’s most prestigious universities.