Kabata Faith, Thaldar Donrich
School of Law, University of KwaZulu-Natal, Durban, South Africa.
Petrie-Flom Center for Health Law Policy, Biotechnology, and Bioethics, Harvard Law School, Cambridge, MA, United States.
Front Genet. 2023 Nov 7;14:1282515. doi: 10.3389/fgene.2023.1282515. eCollection 2023.
While debate on the international regulation of human genomic research remains unsettled, the Universal Declaration on the Human Genome and Human Rights, 1997 qualifies the human genome as "heritage of humankind" in a symbolic sense. Using document analysis this article assesses whether, how and to what extent the common heritage framework is relevant in regulation of human genomic research. The article traces the history of the Human Genome Project to reveal the international community's race against privatization of the human genome and its resulting qualification as the common heritage of humanity. Further, it reviews the archival records of UNESCO's International Bioethics Committee to discover the rationale for qualifying the human genome as common heritage of humankind. The article finds that the common heritage of mankind framework remains relevant to the application of the human genome at the collective level. However, the framework is at odds with the individual dimension of the human genome based on individual personality rights. The article thus argues that the right to benefit from scientific progress and its applications offers an alternative international regulatory framework for human genomic research.
尽管关于人类基因组研究的国际监管的争论仍未解决，但1997年的《世界人类基因组与人权宣言》在象征意义上将人类基因组界定为“人类的遗产”。本文通过文献分析，评估共同遗产框架在人类基因组研究监管中是否相关、如何相关以及在何种程度上相关。文章追溯了人类基因组计划的历史，以揭示国际社会为反对人类基因组私有化及其被认定为人类共同遗产而展开的竞赛。此外，文章回顾了联合国教科文组织国际生物伦理委员会的档案记录，以探寻将人类基因组认定为人类共同遗产的理由。文章发现，人类共同遗产框架在人类基因组于集体层面的应用中仍然具有相关性。然而，该框架与基于个人人格权的人类基因组的个体维度存在冲突。因此，本文认为，从科学进步及其应用中受益的权利为人类基因组研究提供了另一种国际监管框架。
