Garba Ibrahim, Carroll Stephanie Russo
Hastings Cent Rep. 2024 Dec;54 Suppl 2:S120-S125. doi: 10.1002/hast.4937.
Governance of biomedical research in the United States has been characterized by ethical individualism, a mode of reasoning that treats the individual person as the center of moral concern and analysis. However, genomics research raises ethics issues that uniquely affect certain genetically related communities as collectives, not merely as aggregates of individuals. This is especially true of identifiable populations-including Indigenous Peoples-that are often minoritized, socially marginalized, or geographically isolated. We propose an alternative, complementary framework based on the United Nations Declaration on the Rights of Indigenous Peoples (UNDRIP) (2007), which explicitly recognizes both individual and collective rights. We use the CARE Principles for Indigenous Data Governance as a case study to show how this UNDRIP-based framework can complement the individual-focused national standard for research oversight represented by the Belmont principles, thereby better protecting Indigenous Peoples' rights and interests in genomic data.
美国生物医学研究的治理一直以伦理个人主义为特征，这种推理模式将个人视为道德关注和分析的中心。然而，基因组学研究引发了一些伦理问题，这些问题独特地影响着某些作为集体而非仅仅作为个体集合的基因相关群体。对于那些往往被边缘化、社会边缘化或地理上孤立的可识别群体，包括原住民群体来说尤其如此。我们基于《联合国土著人民权利宣言》（2007年）提出了一个替代性的、互补性的框架，该宣言明确承认了个人权利和集体权利。我们以《原住民数据治理CARE原则》为例，说明这个基于《联合国土著人民权利宣言》的框架如何能够补充以个人为重点的、由贝尔蒙原则所代表的国家研究监督标准，从而更好地保护原住民群体在基因组数据方面的权益。
