Neuroscientist Under Investigation After Child’s Death During Gene Editing Trial

Qiu Zilong, a neuroscientist at Shanghai Jiao Tong University, is facing scrutiny following the death of a 6-year-old girl involved in a gene editing trial that he supervised.

Reports indicate that the child received an experimental treatment involving the injection of numerous viruses carrying a Base Editor recipe into her spinal fluid.

The story reveals that in March 2025, the girl arrived at Shanghai’s Xinhua Hospital, dressed in a “pink jacket with a cartoon bear and blue pants.” She seemed to take her hospital visits in stride, as her parents believed she would be well taken care of in this reputable pediatric facility.

Her condition stemmed from a genetic mutation that impedes cognitive development. This experimental approach aimed to correct those mutations using an advanced gene editing technology, likened to CRISPR. Tragically, she became the first person to undergo such brain gene editing therapy, a procedure that cost over $860,000.

The events that followed, however, were kept hidden for a long time, largely due to the oppressive nature of the Chinese Communist Party, which has ambitions of surpassing the U.S. in biotechnology.

A watchdog group called Retraction Watch disclosed that the hospital employed a fast-tracked process that sidestepped government regulations, and Qiu’s team significantly downplayed the treatment’s risks to her family. Experts expressed that adverse reactions noted during animal trials should have halted the move to human trials.

During the gene editing process, a virus was meant to introduce modified genetic material into her cells. Unfortunately, the girl developed a severe immune response to the combination of viruses injected into her spinal column and died just a week after being admitted.

A shocking cover-up followed, erasing her story and fate from any related literature. Notably, Qiu’s team published an article regarding animal testing in gene editing trials after her death, without mentioning her tragic outcome.

After this incident, the hospital faced only a minor penalty from local health officials, and to date, Qiu has not faced any formal consequences. The girl’s parents have since expressed their frustration at the lack of accountability, even using pseudonyms to protect their identities.

“Understanding the absence of proper safety measures really changed how we viewed the whole project. We didn’t realize how unusual and risky many arrangements were,” shared the girl’s father, who requested to be called “Jason.”

Interestingly, Dr. Qiu had once been critical of He Jiankui, known for the unethical creation of genetically edited babies. Despite his earlier reservations, Qiu saw potential for gene editing to tackle neurological issues. In 2023, Jason and his wife reached out to Qiu, expressing willingness to fund the experimental treatment for their daughter, and he responded within 13 minutes.

In the years that followed, Jason reported increasing pressure to financially support the research, sometimes in dubious ways, like informal payments to the research team. Costs soared, and he was warned that any withdrawal of financial support would lead to a waste of expenses already incurred. Although Chinese law forbids charging for untested treatments, the researchers labeled the substantial payments as “donations” to advance medical research.

Jason and his wife documented their interactions with Qiu and the researchers, ensuring they had evidence when it came time for decision-making.

Experts noted a mixed review of the situation. While Qiu’s work was not fraudulent, it seemed he overlooked the dangers associated with the treatment, failing to implement necessary precautions that might have mitigated risk during the procedure.

International scientists, initially excited by Qiu’s work, were angered upon learning about previous unsuccessful experimental treatments involving young patients. They felt misled when the complete context wasn’t disclosed before publication.

Despite Qiu’s company having insurance for the trial, Mei’s parents did not receive any compensation after her death. They expressed regret for not asking more questions, while also feeling the weight of disappointment when discussing their situation with friends who helped fund the treatment.

Recently, Shanghai Jiao Tong University stated that it has formed a special group to investigate Qiu’s clinical work and his published papers. The university emphasized its commitment to research integrity and opposition to unethical practices in medical research.