Girl Died in Gene-therapy Trial, Chinese Authorities Covered It Up

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A six-year-old Chinese girl died after receiving an experimental gene-therapy treatment for a non-life-threatening condition—but the death was covered up.

The young girl died a week after receiving a spinal infusion of viruses designed to fix a rare genetic condition that caused cognitive impairment.

An investigation by Science and Retraction Watch revealed the death this week.

Her parents paid more than $800,000 to fund the experiment, but were not apparently warned of the risks.

A scientific paper was then published about the treatment, but made absolutely no mention of the girl’s death. It simply noted, “Bridging the gap between preclinical research and clinical translation remains a significant challenge.”

The girl had a rare genetic condition called Snijders Blok-Campeau syndrome, which affects less than 250 people worldwide.

The condition is caused by a singe mutation, and results in sufferers having large heads and impaired cognition.

At age 6, the girl had trouble speaking and eating properly.

The cause of death was a severe immune reaction.

The trial was the first attempt to deliver a gene-therapy treatment directly to the brain. It took place a month after a child was successfully treated with gene therapy at the Children’s Hospital in Philadelphia, for a life-threatening metabolic disorder.

Medical Xpress notes, “The previously undisclosed death is a fresh blow to China’s ambitions to rival the United States as a biotech power following the 2018 scandal involving He Jiankui, the biophysicist who secretly produced gene-edited babies.”

“Seven experts who reviewed the details for Science and Retraction Watch said Qiu [the lead scientist] and his team downplayed the trial’s risks and went ahead despite low odds of success.

“They also called for a full review of the data submitted for the Nature paper, saying some findings could warrant a retraction.

“The case also raises questions about whether such risky treatments should initially be tested on patients with nonfatal conditions.”

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