Ethical concerns over Chinese biomedical industry after undisclosed death of young girl in gene-editing trial
The university has announced a working group will “conduct a comprehensive investigation” into the trial and a related scientific paper
A top Chinese medical university is investigating the death of a young girl following an experimental gene-editing trial, raising concern over ethics in China's biomedical industry.
Listen to this article
Shanghai Jiaotong University School of Medicine said it was investigating the clinical trial conducted by a leading expert at the affiliated Xinhua Hospital last year.
The university has announced a working group will “conduct a comprehensive investigation” into the incident, as well as a related scientific paper.
The announcement comes just days after a report detailing the botched clinical trial was released by US-based Science magazine and science accountability publication Retraction Watch.
It is understood that the clinical trial was partially funded by the girl’s parents, who say they paid $860,000 for the development of the treatment - but were not warned by doctors that their daughter could die.
They had hoped the treatment would correct a gene defect causing developmental delays that they were concerned would affect the girl in later life.
Although the hospital’s ethics board concluded the girl’s death was “definitely related” to the treatment, penalties for those involved were minor and the outcome were also never made public - despite results from related research being published in the prestigious science journal Nature.
The discovery of the girl's death has stoked concern in China over the biomedical industry's ethical practices, echoing memories of a 2018 scandal where babies were born from embryos gene-edited by Chinese scientist He Jiankui.
Although the cases were considerably different, Joy Zhang, director of the Centre for Global Science and Epistemic Justice at the University of Kent called this latest situation "much more worrying".
“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," Zhang said, noting that He, by contrast, was a little-known entrepreneur scientist working at a recently established institution.
The discovery of He's interference shocked the global scientific community, and he was sentenced to three years in jail.
Since then, “there’s been a series of government initiatives and commitment of how they want to strengthen ethics … but obviously this is not the case,” Zhang said.