The writer is a science commentatorWhen a couple in China emailed a prominent neuroscientist, it was out of love and desperation for their young daughter Mei (not her real name). A single, rare genetic mutation, they discovered, was slowing her development. Could gene therapy help?
Through a support group for affected families, the couple contacted Zilong Qiu, a talented researcher in Shanghai with a TEDx talk, start-up company and patented treatment for a genetic syndrome under his belt. For the sum of $860,000, Qiu agreed to treat Mei. Within a week of receiving the tailor-made therapy, in early 2025, the six-year-old was dead. A catastrophic immune reaction triggered fatal blood clotting.
A joint investigation by Science magazine and Retraction Watch, a non-profit organisation that tracks disputed research, revealed the tragedy only last month. Mei’s family, who recorded their discussions with Qiu, allege they were not told that death was a possible outcome, nor of safety issues flagged by earlier animal tests.