人脑组织库知情同意的自主性挑战和分析框架  

The Autonomy Challenge and Analytical Framework of Informed Consent in Human Brain Banks

作　　者：张佳乐 陈海丹[1] ZHANG Jia-le;CHEN Hai-dan(The School of Health Humanities,Peking University,Beijing 100191,China)

机构地区：[1]北京大学医学人文学院,北京100191

出　　处：《自然辩证法研究》2024年第12期131-138,共8页Studies in Dialectics of Nature

基　　金：国家社会科学基金重大项目“深入推进科技体制改革与完善国家科技治理体系研究”(21ZDA017)。

摘　　要：人脑组织库是专门收集参与者的全脑和相关组织样本,以及病史信息的生物样本库。当前对人脑组织库建设中伦理问题的讨论相对较少,由于样本和参与者的特殊性,人脑组织库的知情同意问题尚需深入研究。无论在人脑组织库知情同意的程序中如何实现书面同意,因参与者故去造成的缺席都会影响其个人意愿和自主决策的实现。在生命伦理学尊重自主原则的视角下,人脑组织库离世参与者生前的自主决策应当得到持续维护,为此需要对全球范围人脑组织库知情同意中普遍由亲属主导的代理决策方法做出调整,构建尊重自主的人脑组织库知情同意框架。The human brain bank is the biobank dedicated to the collection of participants'whole brain and related tissue samples,as well as their medical history information.Currently,there is little discussion of ethical issues in the construction of human brain banks,and the issue of informed consent for human brain banks needs to be studied in depth due to the specificity of the samples and participants.In human brain banks,regardless of how written consent is implemented in the process of informed consent,the absence of deceased participants will affect the realization of their personal will and autonomous decision making.From the perspective of the principle of respect for autonomy in bioethics,autonomous decision-making of deceased participants in human brain banks should be maintained continuously.To achieve this,it is necessary to adjust the generally kin-dominated approach to surrogate decision making in informed consent for human brain banks worldwide,and build an informed consent framework that respects autonomy.

关 键 词：人脑组织库 知情同意 尊重自主原则 

分 类 号：N031[自然科学总论—科学技术哲学]