Michele Suina

GIDA-RDA COVID-19 Guidelines for Data Sharing Respecting Indigenous Data Sovereignty

Year

Indigenous Peoples around the globe have diverse narratives of resilience and adaptability; however, they are also acutely impacted by the negative social, economic, environmental and health outcomes of COVID-19 (UN Special Rapporteur on the rights of Indigenous Peoples, 2020). As such, it is vital that Indigenous Peoples are included in all aspects of pandemic-related surveillance, research, research planning, and policy.

Systemic policies, and historic and ongoing marginalisation, have led to Indigenous Peoples’ mistrust of agencies and the data/research they produce. For example, Indigenous nation-specific COVID-19 data in the United States have been released by government entities without tribal permission and knowledge. These sensitive data continue to be accessed and reused without consent from Indigenous governing bodies by the media, researchers, non-governmental organisations, and others.

Although this type of data usage is attempting to combat data invisibility of American Indians and Alaska Natives to address gaps, reporting of tribal-specific data is making tribes more visible in ways that can result in unintentional harm and ignores inherent Indigenous sovereign rights. Media perpetuation of misinformation and disinformation is amplifying confusion and harm to Indigenous Peoples.

To avoid increased distrust and harm, and to improve the quality and responsiveness of data activities, Indigenous data rights, priorities, and interests must be recognised in all COVID-19 research activities throughout the data lifecycle, and in ownership of any resulting innovations. We must also acknowledge that expressions of self-determination vary substantially across nation states due to conditions that also undermine the ability of Indigenous Peoples to govern data or enact sovereignty over data.

Native Nations
Resource Type
Topics
Citation

RDA COVID-19 Indigenous Data WG. "Data sharing respecting Indigenous data sovereignty." In RDA COVID-19 Working Group (2020). Recommendations and guidelines on data sharing. Research Data Alliance. https://doi.org/10.15497/rda00052

Reclaiming Indigenous Health in the US: Moving beyond the Social Determinants of Health

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The lack of literature on Indigenous conceptions of health and the social determinants of health (SDH) for US Indigenous communities limits available information for Indigenous nations as they set policy and allocate resources to improve the health of their citizens. In 2015, eight scholars from tribal communities and mainstream educational institutions convened to examine: the limitations of applying the World Health Organization’s (WHO) SDH framework in Indigenous communities; Indigenizing the WHO SDH framework; and Indigenous conceptions of a healthy community. Participants critiqued the assumptions within the WHO SDH framework that did not cohere with Indigenous knowledges and epistemologies and created a schematic for conceptualizing health and categorizing its determinants. As Indigenous nations pursue a policy role in health and seek to improve the health and wellness of their nations’ citizens, definitions of Indigenous health and well-being should be community-driven and Indigenous-nation based. Policies and practices for Indigenous nations and Indigenous communities should reflect and arise from sovereignty and a comprehensive understanding of the nations and communities’ conceptions of health and its determinants beyond the SDH.

Native Nations
Resource Type
Citation

Carroll,S.R.; Suina,M.; Jäger,M.B.; Black,J.; Cornell,S.; Gonzales,A.A.; Jorgensen,M.; Palmanteer-Holder,N.L.; DeLaRosa, J.S.; Teufel-Shone,N.I. Reclaiming Indigenous Health in the US: Moving beyond the Social Determinants of Health. Int. J. Environ. Res. Public Health 2022, 19, 7495. https:// doi.org/10.3390/ijerph19127495

Principles of Indigenous Data Governance

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Indigenous data, whether collected by national governments and institutions or gathered by Indigenous Peoples themselves, are integral for: decision-making; the exercise of collective rights to self-determination; the affirmation and application of Indigenous epistemologies; and fulfilling responsibilities to Indigenous Peoples, nations, communities, and human, spiritual, and non-human relations. Indigenous data include knowledge and information on and about Indigenous Peoples in any format, including cultural heritage embedded in languages, knowledges, practices, technologies, natural resources, waters, and territories. Indigenous data sovereignty asserts the rights of Indigenous Peoples and nations to govern the meaning, collection, ownership, and application of these data about their peoples, lands, cultural practices, and resources. Indigenous data governance enacts Indigenous data sovereignty, providing mechanisms for ensuring Indigenous Peoples’ rights and interests are reflected in data policies and practices.

 

Resource Type
Citation

United States Indigenous Data Sovereignty Network. (February 2020). “Principles of Indigenous Data Governance.” usindigenousdata.org