对谁来说是合理的? 根据自闭症社区的研究相关担忧,重新考虑知情同意披露
Manisha Khatiwada1, Dana Howard1,2, Tema Krempley1
1The Ohio State University.
The American journal of bioethics : AJOB
|March 2, 2026
概括
合理人对知情同意的标准使许多自闭症患者失败. 需要个性化的方法,以确保在研究中为不同人群提供公平的信息披露.
科学领域:
- 生物伦理学生物伦理学
- 在知情同意的情况下同意.
- 研究伦理学研究伦理学
背景情况:
- 知情同意需要平衡充分的信息与实际限制.
- 从历史上看,美国联邦指南列出了研究所需披露的项目.
- 2018年更新的指导方针要求披露"合理人标准".
研究的目的:
- 评估知情同意中的"合理人标准".
- 检查标准对少数群体,特别是自闭症社区的影响.
- 建议改善公平的信息披露在研究.
主要方法:
- 分析美国联邦关于知情同意的指导方针.
- 审查自闭症社区关于参与研究所提出的担忧.
- 对"合理人标准"的个性化解释的论点.
主要成果:
- "合理人标准"可能无法充分满足所有个人的信息需求.
- 强调"普通"人的需求可以系统地使少数群体处于不利地位.
- 自闭症社区的具体担忧突出了当前标准的潜在缺陷.
结论:
- "合理人标准"要求重新评估以确保包容性.
- 对知情同意的个性化方法对于满足不同参与者需求至关重要.
- 为研究小组提供了建议,以加强公平的信息披露.
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