Calac Alec J, Mackey Timothy K
UC San Diego School of Medicine, San Diego, CA, USA.
Global Health Policy and Data Institute, San Diego, CA, USA.
NPJ Digit Med. 2025 Aug 5;8(1):504. doi: 10.1038/s41746-025-01902-w.
There is growing recognition of the moral and legal authority of Indigenous Peoples to regulate research and other matters that involve their communities under the principle of Indigenous Data Sovereignty (IDS). This systematic review has two aims: (1) detail IDS considerations and practices in health research in the United States and other global contexts; and (2) identify frameworks that operationalize IDS practices for responsible conduct of research and use of data-driven technologies. Our review returned 41 relevant articles detailing specific considerations for the collection, access, and use of Indigenous data, and sub-themes such as cultural and regional considerations. More than half of the articles articulated a theoretical framework or detailed set of guidelines for using Indigenous data, with two especially focused on digital data considerations. Results indicate that intentional engagement with Indigenous researchers and communities will minimize harm and maximize benefits for all participating in research and technology development.
根据原住民数据主权（IDS）原则，原住民在规范涉及他们社区的研究及其他事务方面的道德和法律权威正日益得到认可。本系统综述有两个目标：（1）详细阐述美国及其他全球背景下健康研究中的IDS考量及实践；（2）确定将IDS实践落实到负责任的研究行为和数据驱动技术使用中的框架。我们的综述检索到41篇相关文章，详细说明了原住民数据收集、获取和使用的具体考量，以及文化和区域考量等子主题。超过半数的文章阐述了使用原住民数据的理论框架或详细指南集，其中两篇特别关注数字数据考量。结果表明，与原住民研究人员和社区进行有意识的合作，将使所有参与研究和技术开发的各方所受伤害最小化，并使利益最大化。
