Key Principles

Wholistic Perspective
Flexible, Nation Respecting Policies
Respect for Traditional Knowledge
Enhance Complimentary Healing
Collaboration between Nations
Nation Controlled Planning
Coordinated Birthing Care
Inclusive Service Planning
Equitable Birthing Access
Respect Indigenous Choices
Nation Led Wellness Design
Data Accountability
Environment Protection
Distinct Nation Governance
Ongoing Joint Review

Indigenous Data Governance

BORN Ontario is committed to honoring Indigenous data principles by ensuring all data-related decisions are guided by the values, needs, and authority of Indigenous communities.

Indigenous Data Governance Principles

First Nations:

OCAP® Principles

Developed by the First Nations Information Governance Centre (FNIGC), the OCAP® principles are foundational for First Nations data governance:

Ownership: First Nations own their data collectively, similar to how a person owns personal information.

Control: First Nations have the right to control all aspects of data management, including collection, use, and disclosure.

Access: First Nations must have access to data about themselves, regardless of where it is held.

Possession: Physical stewardship of data ensures control and safeguards information integrity.

Métis:

Métis Nation Data Governance Principles

The Métis National Council (MNC) has outlined priorities in data governance, emphasizing:

OCAS Principles: Ownership, Control, Access and Stewardship

Self-Determination: Métis govern the collection and use of their data in line with their nationhood.

Nation-Specific Data: Data must be disaggregated to reflect Métis-specific identities, distinct from First Nations and Inuit.

Capacity Building: Supporting Métis Nations to collect, manage, and interpret their own data.

Respect for Rights and Protocols: Data governance must align with Métis cultural, legal, and political traditions.

Inuit:

National Inuit Strategy on Research (NISR) and Inuit Data Sovereignty

Articulated by Inuit Tapiriit Kanatami (ITK):

Inuit Self-Determination in Data: Inuit govern how data about their communities is collected, analyzed, and used.

Relevance and Benefit: Data initiatives must address Inuit priorities and contribute directly to Inuit well-being.

Cultural Integrity: Data practices must respect Inuit cultural knowledge and worldviews.

Regional Control: Recognizing the governance of Inuit regions (Inuvialuit, Nunavut, Nunavik, Nunatsiavut) over data concerning their populations.

Shared Indigenous Data Governance Values

Across First Nations, Métis, and Inuit, common values include:

Data Sovereignty: Indigenous nations have the right to govern their data in accordance with their laws, governance structures, and traditions.

Ethical Stewardship: Data collection and use must follow ethical standards that prioritize community safety, dignity, and benefit.

Nation-to-Nation Relationships: Data governance reflects the inherent rights of Indigenous nations and their relationships with the Canadian state.

Transparency and Accountability: Clear agreements on data use, security, and accountability to Indigenous communities.

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CARE Principles Explained

Collective Benefit

Data ecosystems should be designed and used to enable Indigenous Peoples to derive collective benefits, rather than solely serving academic, government, or commercial interests.

Key aspects include:

Data activities must enhance the well-being of Indigenous communities.

Use of data should contribute to capacity building, innovation, and equitable outcomes.

Benefits from data (knowledge, technology, funding, opportunities) should be shared equitably with Indigenous communities.

Authority to Control

Indigenous Peoples have the inherent right to govern the collection, access, use, and reuse of data that relates to their people, lands, and resources.

This includes:

Recognizing Indigenous governance structures and protocols in data decision-making.

Ensuring that data sovereignty is respected in policy, practice, and legal agreements.

Indigenous nations can define who has authority to access and interpret their data.

Responsibility

Data users and stewards have a responsibility to engage with Indigenous Peoples ethically and respectfully.

Responsibilities include:

Ensuring data activities do not harm Indigenous communities.

Acknowledging and respecting Indigenous cultural values, knowledge systems, and priorities.

Supporting capacity building within Indigenous communities to manage and govern data.

Ethics

Ethical data governance requires engaging with Indigenous Peoples in ways that reflect their worldviews, laws, and ethical standards.

Key principles of ethics include:

Prioritizing free, prior, and informed consent (FPIC) for data collection and use.

Maintaining transparency, accountability, and respect for cultural sensitivities.

Recognizing that Indigenous knowledge and data are not simply public goods but are embedded within relational, cultural, and spiritual contexts.

Why CARE Matters

The CARE Principles are essential because:

They reframe data governance from an Indigenous rights perspective, reinforcing that data is not neutral.

They provide a framework to counter historical data exploitation of Indigenous communities.

They complement existing data stewardship frameworks like OCAP® (First Nations), Inuit principles, and Métis data governance approaches (OCAS).

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