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DATA SOVEREIGNTY
Who controls Indigenous data, knowledge, and its future…
DATA SOVEREIGNTY
Who controls Indigenous data, knowledge, and its future use?
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CARE & OCAP Principles
OCAP Principles (First Nations)
O - Ownership: Collective ownership of community knowledge and data
C - Control: First Nations direct research and data management
A - Access: First Nations access their own data and determine others' access
P - Possession: Physical control or stewardship of data
CARE vs. OCAP
- CARE → Responsibilities and ethics across Indigenous data ecosystems
- OCAP → Specifically First Nations rights to govern data
- Both → Support Indigenous self-determination and collective authority
CARE Principles (GIDA)
C - Collective Benefit
Data should benefit Indigenous peoples and communities
A - Authority to Control
Indigenous peoples determine how their data is governed - R - Responsibility
Researchers must build respectful, reciprocal relationships
E - Ethics
Indigenous rights and wellbeing come first
Connection to Duarte's Havasupai Example
- CARE Ethics → Research must minimize harm
- CARE Authority to Control → Respect Indigenous decision-making
- OCAP provides a related First Nations governance framework addressing the importance of control over research
Indigenous Data & Risks
Genetic Information: Havasupai Case (Duarte, Ch. 3)
- Blood samples provided for diabetes research
- Researchers also investigated mental illness and inbreeding
- Research extended beyond participants' understanding of its purpose
- Demonstrates the risks of separating data from cultural context
Data Exploitation (All My Relations)
- Corporations profit from collecting and trading data
- Digital footprints make it difficult to opt out
- Losing control over data can harm entire communities
What Counts as Indigenous Data? (GIDA)
- Individual: Health records, identity, genetic information
- Collective: Language, oral histories, cultural traditions
- Non-human relations: Land, water, plants, animals, ecosystems
Why Community Control Matters
- Prevents unauthorized uses of data
- Protects culturally sensitive knowledge
- Helps ensure research serves community priorities
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