On 26/7, the school confirmed to AFP it is investigating reports of the death and has established a specialized committee to conduct a comprehensive review of the incident. A statement from the school emphasized its commitment to scientific integrity, its firm opposition to any medical research violating ethics, and its pledge to severely punish individuals involved based on the investigation's findings.
A joint investigation by Science magazine and Retraction Watch, a non-profit organization monitoring retracted scientific works, revealed the patient, identified as Mei, died last March, approximately one week after receiving an injection into her spinal cord containing trillions of viruses. These were not pathogenic viruses but inactivated ones, used as a 'delivery vehicle' to introduce a corrected gene into her brain, aiming to treat her cognitive developmental delay.
Mei suffered from Snijders Blok-Campeau syndrome, a rare genetic disorder caused by a mutation in a single DNA base, with only about 237 cases recorded worldwide. At age 6, she could only speak simple sentences and had difficulty with movement, requiring assistive devices for eating. However, her condition was improving due to speech and physical therapy. This syndrome is not life-threatening; most patients have a normal life expectancy, although they may have larger head circumferences and varying degrees of intellectual impairment. The report did not specify why the family accepted the risks of an experimental therapy for a non-life-threatening condition.
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Zilong Qiu presenting at an event in 2015. Photo: Xinhua
The project leader was neurologist Zilong Qiu. His goal was to create the world's first gene-editing therapy directly impacting the human brain, by correcting the mutated gene within neurons so the patient's body could produce an essential protein. Qiu's opinion on the incident is currently unknown.
Despite Mei's death, Qiu published an article in the renowned journal Nature in February this year. This work only updated animal trials and did not mention the incident, merely stating the general observation that bridging the gap between preclinical research (the testing phase before human application) and clinical application remains a significant challenge.
The Science and Retraction Watch report also stated that Mei's parents spent over USD 800,000 (approximately 20 billion VND) to fund the trial, but the research team did not fully explain the dangerous risks to them.
According to AFP, the undisclosed death recalls the country's most notorious gene-editing scandal. In 2018, scientist He Jiankui shocked the global scientific community by creating the world's first gene-edited babies, subsequently receiving a three-year prison sentence for illegal medical practice. Qiu was among more than 100 Chinese scientists who signed an open letter condemning He Jiankui at the time. "This project completely disregarded medical bioethical principles, conducting human trials without proven safety", Qiu stated in an interview at that time.
Binh Minh (According to AFP, SCMP, DW, Sina)
