Chinese scientists fired after child dies in world’s first brain gene-editing attempt

The world’s first attempt to edit genes inside a child’s brain, which killed a six-year-old girl in Shanghai last year, has led to the firing of scientists following an official investigation that found they had broken research rules and taken money from her family.

The investigation, ordered by the Communist Party’s Shanghai municipal committee and the local government, concluded on Friday that the researchers had not shared worrying results from monkey tests with the girl’s doctors beforehand. It found that Xinhua Hospital, where she was treated, approved the procedure without key safety data and failed to clearly warn her parents that she could die.

Investigators also said lead scientist Qiu Zilong of Shanghai Jiao Tong University and his hospital colleague Yang Kan were among those who accepted cash and gifts worth about 1.06 million yuan (US$159,000) from the girl’s family, including high-end liquor and electronic devices.

The payments were not disclosed as a conflict of interest in a related paper they published in the journal Nature in February. The probe found no sign of faked data in the study, though it contained inaccurate descriptions of some experiments and other “academic irregularities”.

As punishment, Qiu and Yang were dismissed from their jobs and barred for five years from leading or joining state science projects and competing for awards. Both were also entered into a national database of researchers who have committed serious integrity breaches.

The announcement drew strong reactions on DXY, a popular Chinese medical information platform, where many readers said the researchers had been let off too lightly. “Isn’t this just bribery?” one commenter from Guangdong province wrote, while another asked why no one was facing criminal charges.

Some also questioned the parents’ choice and responsibilities. When a Shanghai user called the girl “lucky” to have parents who spent so much to give her a better life, a commenter from Tianjin replied: “Letting nature take its course and giving up on a child are two different things. Why not think about how much your so-called lucky child suffered?”

At the hospital, Yu Yongguo, the doctor in charge of the clinical study, was removed as head of its research department and demoted, while three other officials were disciplined.

Meanwhile, Shanghai Jiao Tong University School of Medicine was ordered to “reflect deeply and strengthen the management of its affiliated units”. Xinhua Hospital and Songjiang District Central Hospital, which is affiliated with the medical school’s Songjiang Research Institute, were given administrative penalties and told to submit written self-criticisms and make corrections.

The official notice warned that clinical research on cell and gene therapies was “inherently high-risk”, urging institutions and researchers to “abide by industry rules” while remaining “bold in exploring”.

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Chinese scientist under investigation after 6-year-old girl dies ‘following gene therapy’

The girl, whom Science magazine called Mei to protect her family’s privacy, was a kindergarten pupil who took parkour classes but still spoke in simple sentences. She had Snijders Blok-Campeau syndrome, a rare genetic disorder known in just 237 people worldwide that slows speech, learning and movement and has no effective treatment.

After several leading hospitals across China failed to help, her parents turned to Qiu in July 2023, hoping he could design a custom gene-editing treatment.

His team planned to fix the single faulty letter in her DNA by sending editing tools into her brain cells, carried by harmless viruses injected into her spinal fluid. It was the first such attempt in the world, according to a July investigation by Science and Retraction Watch that prompted the official probe.

The family paid about 5.34 million yuan for the project. That included 4.84 million yuan for a Guangzhou firm to make the viruses and for a company in Sichuan province to test them on large animals.

In January last year, Xinhua Hospital’s ethics committee gave the green light for the procedure to move forward, and the girl was injected on March 24. Within days, her kidneys failed and her blood platelets plunged, Science reported.

She was taken into intensive care and died on March 31 of a known side effect of gene therapy, in which tiny blood clots block small blood vessels and damage organs.

The team’s paper, submitted to Nature three months before she was treated, was published almost a year after her death. It reported that the treatment reversed autism-like behaviour in mice, but made no mention of her case at all.

Shanghai’s health commission has launched special inspections of trials involving new medical technologies, according to Friday’s notice.