从“同意捐献”到“自主参与”:样本库研究招募话语的范式转换  

From“Consent to Donation”to“Autonomous Participation”:A Paradigm Shift in Recruitment Discourse of Biobank Research

作　　者：马永慧[1] MA Yonghui(School of Medicine,Xiamen University,Xiamen 361102,China)

机构地区：[1]厦门大学医学院,福建厦门361102

出　　处：《山西大学学报(哲学社会科学版)》2025年第2期40-48,共9页Journal of Shanxi University(Philosophy and Social Science Edition)

基　　金：国家社科基金重大项目“大数据时代生物样本库的哲学研究”(19ZDA039);国家社科基金一般项目“人脑模型研究的伦理挑战及对策研究”(24BZX097)。

摘　　要：“同意捐献”话语在生物样本库招募中发挥了重要作用,其合理性植根于“同意”在医学研究中的历史生成和样本库的概念隐喻。但是样本库的可转化性、再生性和低风险暴露了同意捐献的弊端,充分告知的不可能性阻碍了样本提供者的参与,“同意捐献”话语实际上遮蔽了样本提供者的利益和价值观,割裂了样本提供者和样本库的持续“相互性”和互惠关系。“同意”和“自主”的区别表现在道德价值和真实性层面,“同意捐献”话语无法保障自主,为此,需要将“同意捐献”转向“自主参与”。在样本库研究中,“自主参与”注重价值交流和信息互动,强调决策的过程性和动态性,样本提供者应是“合作伙伴”而非“捐献者”。The“consent to donation”discourse has played an important role in biobanking recruitment,with its plausibility rooted in the historical generation of“consent”in medical research and the metaphorical concept of biobank.However,the translational,reproducible and low risk nature of biobank have exposed the drawbacks of consent to donation.The impossibility of full disclosure hinders the active participation of sample providers,and the discourse of consent to donation effectively masks the interests and values of these providers,disrupting the continuous“reciprocity”and mutual-interactive relationship between the sample providers and the biobank.The difference between“informed consent”and“autonomy”is manifested at the level of moral value and authenticity,and“consent to donation”discourse does not guarantee autonomy.Therefore,there is a need to shift from“consent to donation”to“autonomous participation.”In biobank research,autonomous participation emphasizes value exchanges and information interaction,highlighting the procedural and dynamic nature of decision-making.Sample providers should be seen as“collaborative partners”rather than mere“donors”.

关 键 词：同意捐献 自主参与 样本库研究 隐喻 

分 类 号：B82-057[哲学宗教—伦理学]