Using Indigenous Standards to Implement the CARE Principles: Setting Expectations through Tribal Research Codes.

Area of Science:

• Biomedical data science
• Indigenous studies
• Data governance

Background:

• Large-scale biomedical databases facilitate global research.
• Increasing data volumes present significant data governance and management challenges.
• Existing data sharing frameworks like FAIR principles may not fully address Indigenous Data Sovereignty concerns.

Purpose of the Study:

• To outline the relationship between data sovereignty and ethics for Indigenous Peoples.
• To describe collective rights asserted by Indigenous Peoples for biomedical data control.
• To explore the implementation of CARE Principles for Indigenous Data Governance to complement FAIR.

Main Methods:

• Literature review on Indigenous Data Sovereignty and data governance.
• Analysis of the relationship between sovereignty, ethics, and biomedical data.
• Examination of existing tribal research codes in the United States as models for CARE Principles implementation.

Main Results:

• Indigenous Peoples assert collective rights and control over their biomedical data.
• The CARE Principles (Collective Benefit, Authority to Control, Responsibility, Ethics) provide a framework for Indigenous data governance.
• Tribal research codes demonstrate practical application of Indigenous data governance standards.

Conclusions:

• Implementing the CARE Principles, guided by tribal research codes, can complement FAIR principles.
• A comprehensive policy and procedural approach is needed for tribal participation in biomedical research.
• Recommendations are provided for tribes, institutions, and ethical practices to enhance Indigenous control over biomedical data.