Why have the US, Canada, and Sweden recently taken steps towards Indigenous health data sovereignty?
This project explores why the United States, Canada, and Sweden have recently taken steps towards Indigenous health data sovereignty – a movement that advocates for the rights of Indigenous Peoples to control all aspects of data collection related to their communities. The United States, Canada, and Sweden have unique policies regarding Indigenous peoples, and thus have responded differently to the movement. In the US, the approach has been to increase federal funding and legislative efforts. This includes establishing data sharing policies and tribal consultation laws; these changes aim to enhance tribal access to public health data and increase tribal autonomy. Canada has advanced this movement through the establishment of the first government-funded Inuit Health Survey in Nunavut, where data collection is conducted and owned by Inuit people. Lastly, Sweden has initiated the SamiHET Survey, the first survey in Sweden’s history to collect data on the Sami people, a particularly important feat as Sweden has historically been against collecting any ethnic identifiers in health data. We hypothesize that these positive changes stem from the UN Declaration of Indigenous Rights and increased domestic advocacy by Indigenous communities. Future directions include assessing the viability of linkage systems as a step forward in the movement, analyzing the progress of autonomous tribal data collection in the US, and understanding the extent of Sami's access to data in the newly established SamiHET survey.
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