A systematic review of responsible stewardship of research and health data from Indigenous communities

Abstract

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.

Fig. 1. PRISMA flowchart, detailing article review process.

This systematic review adhered to PRISMA guidelines as applicable for the article content types included in the review. A total of 371 articles published between 2013 and 2024 were identified and screened on PubMed, IEEE Explore, ACM, and JSTOR. After abstract screening, which involved removal of duplicates and confirmation of article type, a total of 53 full-text articles were reviewed based on this study’s systematic review inclusion and exclusion criteria. After further review of the full text, 41 indexed, peer-reviewed articles were deemed eligible for analysis and synthesis of results (11 excluded for non-health focus), 21 from PubMed, 13 from JSTOR, 2 from ACM, and 1 from IEEE Explore^–. Additionally, 4 articles consisting of policy briefs and communiqués from the gray literature were reviewed and came from The University of Arizona Native Nations Institute (U.S.), First Nations Information Governance Center (Canada), and Te Mana Raraunga Māori Data Sovereignty Network (New Zealand), and are discussed in the eSupplement. Article types primarily consisted of original research articles (n = 20, 49%), followed by essays, commentaries, and perspectives (n = 12, 29%), reviews (n = 5, 12%), and policy briefs (n = 4, 10%).