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Journal and University Open Probes After Reporting Reveals Child’s Death and Family Funding in Gene‑editing Study

Revelations that a family paid $860,000 and a child died after an experimental treatment have prompted scrutiny of the paper’s data, disclosure and clinical oversight.

Overview

  • Reporting by Science and Retraction Watch showed the family of a six‑year‑old paid about $860,000 to support development of a gene‑editing therapy and the child died seven days after receiving the treatment from physicians at Xinhua Hospital.
  • Nature posted an Editors’ Note on July 29 and said it is investigating concerns about the February paper, including questions raised about the data presented.
  • Shanghai Jiao Tong University School of Medicine has set up a special task force to conduct a comprehensive investigation into the incident and the research team's conduct.
  • The published paper described only preclinical work in mice and non‑human primates while a preprint had thanked participating families, and the final paper did not disclose the family’s payment or the patient’s death; several external experts have questioned parts of the study’s efficacy data.
  • The case highlights gaps in disclosure rules and clinical oversight for experimental gene therapies, raises ethical questions about patient‑funded research, and could lead to journal corrections, institutional discipline or regulatory reviews.