生命公民刍议:从生物样本库知情同意谈起  

Informed Consent of Biobank:Under the Perspective of Biocitizen

作　　者：李晓洁[1] 王蒲生[2] LI Xiao-jie;WANG Pu-sheng(Institute of Medical Humanities,Peing University;Graduate School at Shenzhen,Tsinghua？University)

机构地区：[1]清华大学科学技术与社会研究所 [2]清华大学深圳研究生院

出　　处：《科学与社会》2018年第2期89-96,共8页Science and Society

摘　　要：知情同意原则的核心是一种赋权模式。参与者需要主动参与和提供健康信息,获取信息、给予"合作者"信任,并对生物样本库中数据和样本未来的使用范围有一定的控制能力。本研究从生命公民角度,探讨生物样本库中的知情同意。"生命公民"概念强调"主动的"、"积极的"公民权,与知情同意中对于自主性的推崇相合。公民通过主动、积极地参与到生物样本库知情同意中,可以打破普通人与专家,即作为主动的研究者和被动的受益者之间的界限。The core of the principle of informed consent is a kind of empowerment mode,participants need to actively participate in and provide health information,access to information,give'partners'trust,and the biological sample data in the database and sample have certain ability to control the scope of application of the future.This study discusses the informed consent in the biological sample database from the perspective of life citizen.The concept of"biocitizen"emphasizes"active"and"positive"citizenship,with the approval of informed consent to promote self-reliance.By actively participating in the informed consent of the biological sample database,citizens can break the boundary between ordinary people and experts,namely,active researchers and passive beneficiaries.

关 键 词：生命公民 知情同意 生物样本库研究 

分 类 号：B82[哲学宗教—伦理学]