npj Digital Medicine · 2024 · 21 citations · 23 references
HumanitiesHealth InformaticsHealth PolicyData EthicsIndigenous Peoples' RightsIndigenous StudiesData SovereigntyIndigenous GovernanceIndigenous HealthIndigenous PeoplesIndigenous RightsIndigenous SovereigntyHealth Data IntegrationHealth Data ProtectionIndigenous Access RightsIndigenous Health EthicsIndigenous Health RightsIndigenous Medical EthicsSelf-determination In HealthSovereignty Movements
Digital health is increasingly promoting open health data. Although this open approach promises a number of benefits, it also leads to tensions with Indigenous data sovereignty movements led by Indigenous peoples around the world who are asserting control over the use of health data as a part of self-determination. Digital health has a role in improving access to services and delivering improved health outcomes for Indigenous communities. However, we argue that in order to be effective and ethical, it is essential that the field engages more with Indigenous peoples´ rights and interests. We discuss challenges and possible improvements for data acquisition, management, analysis, and integration as they pertain to the health of Indigenous communities around the world.
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The CARE Principles for Indigenous Data Governance
Stephanie Russo Carroll, Ibrahim Garba, Óscar Luis Figueroa Rodríguez et al. · Data Science Journal · 2020 · 1.2K citations · Full text
Law, Data Science, Data Ethics +16
Operationalizing the CARE and FAIR Principles for Indigenous data futures
Stephanie Russo Carroll, Edit Herczog, Māui Hudson et al. · Scientific Data · 2021 · 447 citations · Full text
Janet Smylie, Michelle Firestone · Statistical Journal of the IAOS · 2015 · 150 citations · Full text