{"id":542961,"date":"2026-07-25T03:59:08","date_gmt":"2026-07-25T03:59:08","guid":{"rendered":"https:\/\/www.newsbeep.com\/nz\/542961\/"},"modified":"2026-07-25T03:59:08","modified_gmt":"2026-07-25T03:59:08","slug":"death-of-girl-in-chinese-gene-editing-trial-kept-secret-report","status":"publish","type":"post","link":"https:\/\/www.newsbeep.com\/nz\/542961\/","title":{"rendered":"Death of girl in Chinese gene-editing trial kept secret: report"},"content":{"rendered":"

A six-year-old Chinese girl died last year after receiving an experimental gene-therapy<\/a> to correct a non-life-threatening condition, according to an investigation by Science and Retraction Watch.<\/p>\n

The girl, given the pseudonym “Mei,” died a week after receiving a spinal infusion of trillions of viruses last March designed to penetrate the brain and fix a rare genetic condition that caused her mild cognitive impairment, the report said Thursday.<\/p>\n

But her parents, who paid more than $800,000 to fund the experiment, were not adequately informed about the risks, the report said.<\/p>\n

The lead researcher went on to publish a paper on related animal studies in the prestigious journal Nature that made no mention of Mei, noting only “bridging the gap between preclinical research and clinical translation remains a significant challenge.”<\/p>\n

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 around He Jiankui<\/a>, the biophysicist who secretly produced gene-edited babies<\/a>.<\/p>\n

Mei had a rare genetic condition called Snijders Blok-Campeau syndrome, known to affect just 237 people worldwide.<\/p>\n

Caused by a single mutated DNA base, a T that should be a C, most affected individuals have a normal life expectancy, have larger-than-normal heads and intellectual deficits, though the extent varies widely.<\/p>\n

For Mei, this meant still speaking in simple sentences at age six and eating with training chopsticks, though speech and occupational therapy was helping.<\/p>\n

The trial was led by neuroscientist Zilong Qiu, one of several researchers globally racing to turn base editors — a more precise form of the CRISPR gene editor<\/a> — into custom treatments for children with rare genetic conditions.<\/p>\n

Just a month earlier, an infant with a life-threatening metabolic disorder successfully received such a treatment at the Children’s Hospital of Philadelphia.<\/p>\n

With Mei’s treatment, Qiu was aiming for the world’s first ever gene-editing therapy directed at the brain, rewriting the mutated gene in her neurons so she could make a vital protein.<\/p>\n

Instead she died a week later from a severe immune reaction.<\/p>\n

Seven experts who reviewed the details for Science and Retraction Watch said Qiu and his team downplayed the trial’s risks and went ahead despite low odds of success.<\/p>\n

They also called for a full review of the data submitted for the Nature paper, saying some findings could warrant a retraction.<\/p>\n

The case also raises questions about whether such risky treatments should be initially tested on patients with nonfatal conditions.<\/p>\n

In 1999, the death of 18-year-old Jesse Gelsinger, who received gene therapy for a genetic disease of the liver despite having a milder form, chilled research in the field for the next decade.<\/p>\n","protected":false},"excerpt":{"rendered":"A six-year-old Chinese girl died last year after receiving an experimental gene-therapy to correct a non-life-threatening condition, according…\n","protected":false},"author":2,"featured_media":542962,"comment_status":"","ping_status":"","sticky":false,"template":"","format":"standard","meta":{"footnotes":""},"categories":[5],"tags":[138,111,139,69],"class_list":["post-542961","post","type-post","status-publish","format-standard","has-post-thumbnail","category-business","tag-business","tag-new-zealand","tag-newzealand","tag-nz"],"_links":{"self":[{"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/posts\/542961","targetHints":{"allow":["GET"]}}],"collection":[{"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/posts"}],"about":[{"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/types\/post"}],"author":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/users\/2"}],"replies":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/comments?post=542961"}],"version-history":[{"count":0,"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/posts\/542961\/revisions"}],"wp:featuredmedia":[{"embeddable":true,"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/media\/542962"}],"wp:attachment":[{"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/media?parent=542961"}],"wp:term":[{"taxonomy":"category","embeddable":true,"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/categories?post=542961"},{"taxonomy":"post_tag","embeddable":true,"href":"https:\/\/www.newsbeep.com\/nz\/wp-json\/wp\/v2\/tags?post=542961"}],"curies":[{"name":"wp","href":"https:\/\/api.w.org\/{rel}","templated":true}]}}