人类遗传资源提供者利益分享的正当性探讨  

Discussion on the Legitimacy of Benefit Sharing among Providers of Human Genetic Resources

作　　者：李雅琴[1] 惠学远 LI Yaqin;HUI Xueyuan(School of Medical Humanities,Tianjin Medical University,Tianjin 300070,China)

机构地区：[1]天津医科大学医学人文学院,天津300070

出　　处：《中国医学伦理学》2021年第11期1393-1398,共6页Chinese Medical Ethics

摘　　要：随着生物科技的快速发展,利益分享成为人类遗传资源研究中的一重大难题,如何保障提供者在参与研究中的合理利益越来越受到社会关注。遗传资源提供者在要求利益分享时常面临不道德诱惑、利他主义和努力应得理论等的质疑,始终处于被忽视或得不到与自身相匹配利益的境地。基于人类遗传资源财产属性、贡献应得理论和公平正义原则,理应认同提供者利益分享的权利。通过限定利益分享主体、样本属性分类、完善知情同意及双重利益分享等方式,保障提供者利益分享的实现。通过对利益分享争议背后伦理观念的反思,从贡献视角和正义视角发掘利益分享的内在伦理基础,主张在契约自治前提下保障不利地位者的利益分享。With the rapid development of biotechnology,benefit sharing has become important problem in the study of human genetic resources.How to protect the reasonable interests of the providers in the research has attracted more and more social attention.Genetic resource providers are often confronted with the question of immoral temptation,altruism and the theory of deserving efforts when they ask for benefit sharing,and they are always ignored or cannot get their own matching benefits.Based on the property attributes of human genetic resources,the theory of contribution due and the principle of fairness and justice,it should be recognized that the providers have the right to share benefits.The realization of provider benefit sharing is guaranteed by limiting benefit sharing subjects,sample attribute classification,improving informed consent and double benefit sharing.Through the reflection of the ethical concept behind the dispute of benefit sharing,this paper explored the internal ethical basis of benefit sharing from the perspective of contribution and justice,and advocated the protection of the benefit sharing of the disadvantaged under the premise of contractual autonomy.

关 键 词：人类遗传资源 利益分享 贡献 公平正义 

分 类 号：R-052[医药卫生]