197
8【聊了什么 The What】
本期节目，我们从六岁女孩小美（化名）的离世谈起。2025年3月24日，小美在上海交通大学医学院附属新华医院接受了一项被称为“全球首例”的试验性脑部碱基编辑治疗。术后七天，她在出现严重免疫反应和血栓性微血管病后不幸离世。
基因编辑如何运作？病毒载体、免疫反应与脱靶效应可能带来哪些风险？动物实验、伦理审查和知情同意是否真正保护了接受试验性治疗的儿童？当一个孩子的病情并不危及生命时，又是谁在决定什么样的风险“值得承担”？主播八如和仁慈与常驻嘉宾 Jayne 一起，从基因编辑的基本原理出发，讨论这场悲剧背后的医疗伦理、风险披露与公众知情权。
我们也试图把视线从单一的“医疗事故”移向更深层的问题：社会对独立、健全与正常的执念，是否加剧了残障儿童及其家庭的恐惧？当教育、照护和社会支持不足时，选择高风险医疗干预，究竟是不是一种真正自由的选择？当医学试图“修正”残障，我们更需要追问：它是否真正把人的生命、意愿与生活经验放在了中心？
内容提示：本期涉及儿童死亡、试验性医疗、医疗创伤及健全中心主义。
In this episode, we begin with the death of Mei, a six-year-old girl whose name has been changed for privacy. On March 24, 2025, she underwent an experimental gene-editing therapy directed at the brain at Xinhua Hospital affiliated with Shanghai Jiao Tong University School of Medicine. The procedure was described as the first of its kind in the world. Seven days later, she died after developing a severe immune response and thrombotic microangiopathy.
How does gene editing work? What risks are associated with viral vectors, immune reactions, and off-target effects? Did the animal testing, ethical review, and informed-consent process adequately protect a child receiving an experimental treatment? When a child’s condition is not life-threatening, who decides which risks are “worth taking”? Hosts Baru and Merci are joined by guest Jayne to examine the science of gene editing and the questions of medical ethics, risk disclosure, and the public’s right to know raised by this case.
We also look beyond the idea of an isolated “medical accident” to consider a deeper issue: Does society’s fixation on independence, able-bodiedness, and normalcy intensify the fears experienced by disabled children and their families? When adequate education, caregiving, and social support are unavailable, can choosing a high-risk medical intervention truly be considered a free choice? When medicine attempts to “correct” disability, we must ask whether it is truly placing people’s lives, wishes, and lived experiences at the center.
Content note: This episode discusses the death of a child, experimental medical treatment, medical trauma, and ableism.
Death of girl in Chinese gene-editing trial was never made public | Science | AAAS
【本期嘉宾 Episode Guests】
Jayne：常驻嘉宾，拥有辣辣神经元
仁慈：假肢使用者，残障研究者，过气网红
八如：INFJ听人，电影导演，美国聋校教师
Jayne: Neurospicy, regular Podcast guest
Mercy: Prosthetic user, disability studies researcher, and "former internet influencer."
Baru: INFJ, hearing ally, film director, and Teacher of the Deaf and Hard of Hearing
【时间轴 The When】
00:00:00 | “全球首例”之后：小美与SBC综合征
00:03:33 | 基因编辑如何“改写”DNA？
00:07:42 | 病毒载体、免疫反应与脱靶风险
00:15:16 | 这场治疗真的有必要吗？
00:19:41 | 动物实验、风险披露与伦理审查
00:25:38 | 当医学试图“修正”残障
00:36:00 | 知情同意是否包括其他选择？
00:40:19 | 公众知情权与医学权威
00:44:56 | 为什么承担风险的总是孩子？
00:48:19 | 沉默、论文与一场被隐去的死亡
00:00:00 | After the “World’s First”: Xiaomei and SBC Syndrome
00:03:33 | How Does Gene Editing “Rewrite” DNA?
00:07:42 | Viral Vectors, Immune Reactions, and Off-Target Risks
00:15:16 | Was This Treatment Truly Necessary?
00:19:41 | Animal Testing, Risk Disclosure, and Ethical Review
00:25:38 | When Medicine Seeks to “Correct” Disability
00:36:00 | Does Informed Consent Include Alternatives?
00:40:19 | The Public’s Right to Know and Medical Authority
00:44:56 | Why Are Children the Ones Bearing the Risk?
00:48:19 | Silence, Publication, and a Death Left Untold
【我们是谁 Who We Are】
残言片语是一档用残障视角看主流问题的中文播客。残障是人类无法逃避的脆弱性问题，我们致力于在日常生活和社会热点中搜寻被忽视的残障视角，期待和观众一起挑战刻板印象，打击健全中心主义（Ableism），从而真诚地感知、理解、创造自己与世界。
“Disabled Talks” is a Chinese podcast that explores mainstream issues through a disability lens, recognizing disability as an unavoidable aspect of human vulnerability often overlooked in mainstream discussions. Our mission is to uncover overlooked disability perspectives in everyday life and current events, challenge stereotypes, combat ableism alongside our audience, and foster genuine ways to perceive, understand, and shape ourselves and the world. Join us in reimagining societal narratives through the vital prism of disability experience.
【支持我们 Please Support Us】
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- 海外用户：patreon.com/disabledtalks
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If you like our show and want to support us, please consider the following:
- Those Abroad: patreon.com/disabledtalks
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