“Epoch Times July 29, 2026” (Epoch Times special reporter Yamaha News Analysis) “Science” and ‘Retraction Watch’ jointly investigated and published a report revealing the death of a 6-year-old Chinese girl after an experimental gene editing therapy which had been covered up. Why couldn’t the lessons from He Jiankui’s case be learned from and prevented from happening again?
The academic supervision website ‘Retraction Watch’ published two significant investigations in succession, uncovering a case where a 6-year-old Chinese girl, using the pseudonym “Mei,” died due to a concealed gene editing treatment. ‘Retraction Watch’ is a blog that reports on retractions of scientific papers and related topics. Launched in August 2010, it is an affiliate of the non-profit organization ‘Center for Scientific Integrity’ (CSI) and has a partnership with the world-renowned journal ‘Science,’ with this investigation being completed in collaboration with ‘Science’ and published in ‘Science.’
Two years ago, Mei’s parents found that their 4-year-old daughter, Mei, was lagging behind in language, writing, and drawing compared to children her age, exhibiting characteristics of autism. Subsequently, Mei was diagnosed with a rare neurological developmental disorder caused by a mutation in the CHD3 gene, which has only been documented in 237 cases worldwide.
In 2023, Mei’s parents Jason and Linda learned about the figure behind this experimental treatment from a support group for families of similar patients, Dr. Qiu Zilong from Xinhua Hospital affiliated to Shanghai Jiao Tong University School of Medicine.
Qiu Zilong is an expert in the field of neurological developmental disorders. He had studied at the University of California, San Diego, then returned to China in 2009, publishing papers in prestigious journals such as ‘Nature,’ ‘Neuron,’ and ‘Proceedings of the National Academy of Sciences’ (PNAS).
After the exposure of He Jiankui’s human gene editing experiments, Qiu Zilong was one of over a hundred Chinese scientists who co-signed an open letter condemning the experiments, indicating that he was not ignorant of the risks and medical ethics of gene editing therapy but still proceeded with a similar path.
Father Jason sent an email to Qiu Zilong, attaching his daughter’s medical records and expressing willingness and capability to bear the costs of the gene therapy. Thirteen minutes later, Qiu Zilong responded to the email, and they quickly reached an agreement to proceed with the experimental gene therapy for Mei.
Evidently, Qiu Zilong, welcoming willing trial participants who also provided funds for the experimental treatment, showed more enthusiasm and determination than the parents.
This was the first human clinical trial of this type of gene therapy, not based on completed animal experiments. The major animal experiments started only after Mei’s parents provided funding, involving two years from therapy development to experiments on mice and macaques. Qiu Zilong’s lab spent over a year establishing a mouse model with the same gene defect and similar symptoms. It is worth mentioning the high level of this lab, achieving human experiments within a brief two-year period, comparable to a paper in the league of ‘Nature.’
The experiment involved delivering gene editing tools into the cerebrospinal fluid using adenovirus. Unlike He Jiankui’s modification of a single fertilized egg cell, this treatment required editing a large number of brain cells, necessitating a substantial amount of adenoviral vectors. To achieve the treatment’s goal, the injected adenovirus had to surpass thousands of doses of adenovirus vaccines. Past gene therapy studies have indicated that the major risk lies in the body’s immune response to an excessive amount of virus entering the body.
Although Qiu Zilong and his team members presented various potential risks to the parents, they apparently avoided deliberately discussing the most significant risk: the potential death of the patient from this experimental therapy.
Mei’s symptoms were not severe, making her an unsuitable candidate for high-risk experimental gene therapy. The issue had been raised in the U.S. medical community over twenty years ago after the Gelsinger case, whether such therapies should be tested on non-fatal disease patients.
Gelsinger was an 18-year-old teenager from Arizona, USA, suffering from a rare liver disease. In September 1999, four days after undergoing a gene therapy trial at the University of Pennsylvania, he died from multiple organ failure. His treatment also involved injecting adenoviral vectors, making him the world’s first participant in a gene therapy clinical trial to die.
There are similarities between the Gelsinger case and the He Jiankui incident. He Jiankui modified the CCR5 gene of twin sisters, rendering them resistant to HIV. Even from a medical ethics perspective, it was a meaningless experiment, as there are already individuals naturally resistant to HIV due to CCR5 variations present in the population. The genetically modified infants were highly unlikely to come into contact with the HIV virus throughout their lives, assuming they lived to a typical age. Unless the purpose of the experiment was merely for the title of being the first in the world.
Experimental clinical treatments inherently carry risks. Participants in experimental treatments often do not bear the treatment costs, hence such experiments are typically funded by large pharmaceutical companies or national research funds. In the West, there are instances where patients have financed ‘personalized therapies’ themselves. However, this case, similar to Gelsinger’s, demonstrates conflicts of interest on an economic level.
Qiu Zilong previously requested the parents to make payments to individual team members. Eventually, they transferred $130,000 to a personal account of a researcher responsible for the experiment.
This arrangement gave the researchers a motivation to carry out the experiment to its conclusion, even though the actual situation indicated extremely high risks.
After the exposure of the He Jiankui case, the initial assertion was that he had obtained approval from the hospital’s ethics committee. However, the ultimate conclusion was that the trial had not genuinely passed proper ethical approval but had falsified review documents and meetings that never took place. Many signatories, both individuals and organizations, denied their understanding and participation post hoc. In China, the trend of institutions shifting blame after incidents is not uncommon.
Subsequent efforts were made by the authorities to amend and implement multiple laws and regulations. However, these laws and regulations seemed to have had no effect in overseeing and preventing accidents in Mei’s gene therapy.
One reason for this is the dual-track system in China’s biomedical regulatory framework: carrying out non-commercial clinical experiments initiated by researchers in large hospitals can test novel gene therapies without the approval of national regulatory authorities.
According to documents from the Yangpu District Health and Wellness Committee where Xinhua Hospital is located, the hospital ethics committee did not review the safety study involving primates before approving Mei’s clinical trial.
If this experiment had undergone more rigorous scrutiny by the National Medical Products Administration with commercial funding rather than a researcher-initiated clinical trial, would the outcome have been different? The issue lies in why a dual-track system was established from the start, unlike the single review system in the United States. This was not an accidental mistake but an intentional loophole left behind.
Similar to the dual-pricing system in the early days of China’s reform and opening up, all dual-track systems are designed to benefit privileged classes. It is not members of the privileged class conducting these high-risk experiments themselves, but rather, there must be some willing to act as experimental guinea pigs first, paving the way for the needs of the privileged class.
After the animal experiments were essentially completed, Qiu Zilong’s team submitted the results of the experiments on mice and macaques to the journal ‘Nature,’ a top international journal paralleled with ‘Science.’ Qiu Zilong even viewed this act of submission as good news to encourage the parents of the patients.
However, a year after the surgery failure and patient’s death, ‘Nature’ published a revised article that deliberately omitted the genetic data related to the family and the original acknowledgments. In other words, the article did not reveal that human experiments had been conducted and had failed.
The scientific community hailed this as a significant scientific breakthrough, with many parents of sick children beginning to inquire about the possibility of their children receiving treatment. It was Mei’s parents who sought the retraction from ‘Nature,’ fearing for others’ children, ultimately exposing the truth. Did this team have no shred of remorse?
Gene editing experiments violating bioethics are not unique to China.
One well-known case is the Golden Rice incident, where the gene for beta-carotene was transferred to rice, giving it a golden color. In 2005, the U.S. agribusiness company Monsanto synthesized the second-generation Golden Rice.
Three years later, in 2008, Tufts University in the U.S. and Zhejiang Academy of Medical Sciences conducted human consumption experiments on 24 school students in Hunan Province. As the experiments were conducted without parental consent, the Massachusetts Supreme Court ruled that the research violated ethics, and the ‘American Journal of Clinical Nutrition’ retracted the published papers.
In recent days, the uproar surrounding the Fauci diary in the U.S. prompts one to recall the gene modification of bat coronaviruses incident by the Wuhan Virus Institute.
At the time, the reason Fauci’s Allergy and Infectious Diseases Institute outsourced the gain-of-function experiments to the Wuhan Virus Institute through the EcoHealth Alliance was not only due to the plentiful samples of bat coronaviruses there, but also likely because the oversight was looser, circumventing stricter U.S. regulations.
Radical elements in science exist in every country, but China has a more fertile ground, namely the Chinese Communist Party’s contempt for ordinary lives and a party culture marked by complete atheism and fearlessness.