上海交通大学医学院附属新华医院一名6岁女童在接受体细胞碱基编辑治疗后于一周内死亡1。该患儿患有Snijders Blok–Campeau综合征1，这是一种全球仅有数百名确诊患者的罕见疾病1。事件发生于2025年3月24日1，后经国际期刊《Science》的调查而在2026年7月26日公开1。
这一死亡事件引发了关于实验性基因治疗的广泛讨论，涉及研究设计、临床前证据、伦理审查和不良事件报告等多个环节1。上海交通大学医学院已成立专项工作组对此进行全面调查1。该事件也唤起了对1999年Jesse Gelsinger在腺病毒基因治疗临床试验中死亡的历史回顾1。
A six-year-old girl died within one week after receiving experimental somatic cell base editing therapy at Xinhua Hospital affiliated with Shanghai Jiao Tong University School of Medicine 1. The child was being treated for Snijders Blok–Campeau syndrome, a rare genetic disorder affecting only several hundred confirmed patients globally 1.
The fatal incident occurred on March 24, 2025, but remained undisclosed until an investigation by the international journal Science brought the case to public attention on July 26, 2026 1. The incident has sparked widespread debate regarding research design, preclinical evidence, ethical review procedures, and adverse event reporting protocols 1. Shanghai Jiao Tong University School of Medicine has established a special task force to conduct a comprehensive investigation into the matter 1.
This case draws comparison to the 1999 death of Jesse Gelsinger, who died during an adenoviral gene therapy clinical trial, highlighting ongoing concerns about safety in gene therapy research 1.
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