A Chinese university is looking into reports that a gene-editing trial caused the death of a six-year-old girl, which was not disclosed in the published research, the school said.
The girl, given the pseudonym “Mei”, died last year around a week after receiving a spinal infusion of trillions of viruses designed to penetrate the brain for treatment, according to a joint investigation by Science and Retraction Watch.
The experimental gene therapy was meant to fix a rare genetic condition that caused a delay in cognitive development, the report said on Thursday.
Neuroscientist Zilong Qiu, the lead researcher, went on to publish a paper on related animal studies in the journal Nature that made no mention of Mei.
In response, the Shanghai Jiao Tong University School of Medicine said in a statement yesterday that it “attaches great importance to the matter and has set up a special working group to conduct a comprehensive investigation into the incident”.
“The School of Medicine has always attached great importance to scientific research integrity and research norms, and firmly opposes conducting medical scientific research in violation of scientific research ethics,” it said.
It added that “serious action” would be taken in accordance with the investigation’s findings.
Mei’s parents, who paid more than US$800,000 (RM3.2mil) to fund the experiment, were not adequately informed about the risks, the report by Science and Retraction Watch said.
Qiu was aiming to offer the world’s first gene-editing therapy directed at the brain, rewriting the mutated gene in her neurons so she could make a vital protein, it said.
China has worked to tighten oversight of emerging medical technologies since scientist He Jiankui shocked the world by creating the world’s first genetically altered babies, testing the balance between supervision and its ambition to lead in biotech innovation.
In June, China revamped regulations around cell and gene therapy research, restricting cutting-edge trials to certain hospitals and banning institutions from charging patients fees related to clinical research. — AFP
