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6-year-old girl dies after parents paid $860K for experimental therapy
New York Post • • health
Key Points:
- In China, parents paid $860,000 for an experimental base editing gene therapy to treat their daughter Mei’s rare developmental disorder, despite warnings of low success and safety concerns from animal studies.
- Mei’s treatment involved injecting trillions of viruses into her spinal canal to reach her brain, but she developed severe complications and died days later from thrombotic microangiopathy, a known risk of the therapy.
- Researchers, led by Zilong Qiu, pushed forward with the treatment and published a paper in Nature without acknowledging Mei or the ethical concerns surrounding the trial, sparking calls for investigation and review of the data.
- Experts criticized the trial as premature and unsafe, highlighting misleading assurances to the family and questionable preclinical evidence, while the hospital faced minimal penalties for the fatal outcome.
- The case has raised broader issues about oversight in experimental gene therapies, exploitation of desperate families, and the responsibilities of scientific journals in handling ethical controversies.
