Girl’s undisclosed death in gene-editing trial raises red flags in booming Chinese industry

A young girl's undisclosed death in a gene-editing clinical trial at Shanghai Jiaotong University has sparked intense debate and raised serious ethical concerns about China's burgeoning biomedical industry. The Shanghai Jiaotong University School of Medicine has launched an investigation into the clinical trial that took place at Xinhua Hospital last year, as well as a related scientific paper.

The scandal comes to light just days after Science magazine and Retraction Watch published a joint report detailing the flawed trial, which was partly funded by the girl's parents who reportedly paid $860,000 for the treatment. The parents claim they were not warned that their daughter faced a risk of death and hoped the experimental treatment could correct a gene defect causing developmental delays.

The hospital's ethics board concluded the girl's death was "definitely related" to the treatment, but penalties were minimal and the outcome was never made public. This case has ignited outrage and concern in China, especially following another scandal in 2018 where embryos were gene-edited by scientist He Jiankui, resulting in the birth of babies with edited DNA.

Unlike this case, those gene-editing embryos were not passed down to future generations, and the research was carried out by a relatively unknown scientist working in a newly established institution. The case has once again highlighted persistent gaps in regulation, transparency, safety, and accountability within China's rapidly expanding biotechnology sector, driven by the country's dual-track regulatory system that allows for early-stage human trials with less oversight.

Experts warn that this incident may merely be the tip of the iceberg, given the ongoing biomedical boom in China.