Indigenous and Tribal Peoples Data Governance in Health Research: A Systematic Review

Area of Science:

• Public Health
• Data Science
• Indigenous Studies

Background:

• Population-level data offers significant potential for enhancing health research and reporting for Indigenous and Tribal peoples.
• The growing data economy necessitates robust governance frameworks for data pertaining to Indigenous peoples, defining decision-making authority and usage protocols.

Purpose of the Study:

• To systematically review the health research literature on Indigenous Data Governance (ID-GOV).
• To identify, describe, and synthesize definitions, principles, and frameworks of ID-GOV.
• To identify and describe processes, policies, and practices within ID-GOV.

Main Methods:

• An international a priori PROSPERO-registered systematic review (CRD42020170033) was conducted.
• Sixty-eight articles were included in the review.
• The review synthesized information on definitions, principles, frameworks, and practices of ID-GOV.

Main Results:

• Five essential components for governing health research data concerning Indigenous peoples were identified.
• These components include Indigenous governance, institutional ethics, socio-political dynamics, data management and stewardship, and overarching influences.
• This review presents the first systematic international examination of ID-GOV.

Conclusions:

• The identified components provide a foundation for developing diverse governance strategies in Indigenous health research.
• Effective ID-GOV is vital for ensuring ethical data collection, use, and benefit-sharing for Indigenous communities.
• This research contributes to optimizing the use of population-level data for Indigenous well-being.