Halmai Nicole B, Taitingfong Riley, Jennings Lydia L, Yracheta Joseph, Garba Ibrahim, Lund Justin R, Curley Caleigh A, Claw Katrina G, Taualii Maile, Garrison Nanibaa' A, Carroll Stephanie Russo
1Traditional and ancestral lands of the Patwin Peoples.
2Genome Center, University of California, Davis, California, USA; email:
Annu Rev Genomics Hum Genet. 2025 Apr 18. doi: 10.1146/annurev-genom-022024-125543.
As the field of genomics and human genetics continues to push our understanding of disease and biodiversity through an ever-increasing pool of genomic data, it is critical to consider the social, ethical, and legal implications of using such data. This is particularly true for genomic data pertaining to Indigenous Peoples, much of which has been collected and (re)used in research without the informed consent of Indigenous communities or without the return of benefits of research discoveries to these communities. Indigenous data sovereignty (IDSov) provides a framework through which Indigenous Peoples can assert their right to control data on or about their communities and lands. Here, we provide a review of IDSov and recommendations for how researchers can integrate it into their genomic research with Indigenous Peoples. Inclusion of IDSov in genomic research design supports meaningful partnerships between researchers and Indigenous communities, ensuring the maximization of benefits and minimization of harms for improved community health and prosperity.
随着基因组学和人类遗传学领域通过不断增加的基因组数据集，持续推动我们对疾病和生物多样性的理解，考虑使用此类数据的社会、伦理和法律影响至关重要。对于与原住民相关的基因组数据而言尤其如此，其中许多数据在未经原住民社区知情同意或未将研究发现的利益回馈给这些社区的情况下，就已被收集并（重新）用于研究。原住民数据主权（IDSov）提供了一个框架，通过该框架，原住民能够主张其控制有关其社区和土地的数据的权利。在此，我们对IDSov进行综述，并就研究人员如何将其纳入与原住民的基因组研究提出建议。在基因组研究设计中纳入IDSov，有助于研究人员与原住民社区建立有意义的伙伴关系，确保利益最大化和危害最小化，以促进社区健康与繁荣。
