Mawkim.org

(RHS) First Nations Regional Longitudinal Health Survey

Code of Research Ethics

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Statistical Highlights

Not applicable; this is a governance and ethics document.

Notable Findings

This was one of the earliest formal articulations of the OCAP® principles—Ownership, Control, Access, and Possession—which have since become the foundation of Indigenous data sovereignty. It also established that all research results must be reviewed by FNIGC prior to publication to ensure community-first accuracy and accountability.

Abstract

This ethics code was developed by FNIGC and regional First Nations partners to govern research under the RHS. Adopted in 1997 and revised in 2005 and 2007, it codified the OCAP® principles—Ownership, Control, Access, and Possession—and provided detailed protocols for consent, confidentiality, authorship, data access, and publication. Designed to uphold Indigenous self-determination in all aspects of research, it applied across ten regions and all future RHS cycles.

The document became a foundational touchstone for Indigenous data sovereignty, ensuring that research respects legal traditions, community priorities, and the need for long-term trust.

RELEASE DATE:

February 22, 2007 (Revised January 27, 2005; Originally adopted July 25, 1997)

CONDUCTED BY:

First Nations Information Governance Committee (FNIGC), under the Assembly of First Nations; developed through national collaboration with regional First Nations organizations and supported by the Medical Services Branch

DATA COLLECTION PERIOD:

Applies to all RHS data cycles beginning with 1997 and guiding ethics for future cycles including 2002/03 onward.

PARTICIPATING COMMUNITIES:

Applies nationally to all First Nations communities involved in the RHS; includes representation from 10 regions such as BC, Alberta, Manitoba, Ontario, Quebec, Atlantic Canada, and the North.

LENGTH & STRUCTURE:

7 pages outlining ethical principles, research governance guidelines, and protocols for data access, analysis, and publication, divided into 9 formal sections.

Why It Matters

The Code of Research Ethics formalized the conditions under which First Nations, including Mi’kmaq, would allow health data to be collected and used. It established that data belongs to the people it describes, reinforcing community control over every stage—from consent to storage to publication. The requirement for FNIGC review of results before public release (Section 5.3) ensures that the information shared is not only accurate, but culturally safe and representative​.

For Mi’kmaw communities, this provides protection against harmful narratives and ensures alignment with community priorities. The code is more than a compliance checklist—it is a statement of jurisdiction and trust, recognizing the right to define the terms of one’s own story.

Key Topics

  • Codified OCAP® principles as the basis for First Nations data sovereignty and ethical research.
  • Established rules for consent, confidentiality, access, authorship, and data use across all research phases.
  • Reinforced community participation, control, and benefit throughout data collection, analysis, and publication.

Before OCAP, we didn’t know what happened to our data. Now we decide how it’s used, and that’s changed how people feel about participating in research.

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