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For a long time, research policy has been driven by crisis and scandal, from the Nuremberg Code, drafted after Nazi experiments on concentration camp prisoners during World War II, to the Belmont Principles, developed after exposure of a decades-long study by the US government on untreated syphilis in poor African American farmers living around Tuskegee, Alabama. By applying the concept of Indigenous data sovereignty, this project tries to correct this reactive posture by centering the legally recognized rights of Indigenous Peoples as self-determined collectives in developing policy for research that affects their communities.
NNI's Stephanie Carroll (Ahtna) is Principal Investigator on a National Science Foundation (NSF) Ethical and Responsible Research (ER2) project that aims to strengthen the ability of Native nations to exercise sovereign rights over their data. Titled “An Indigenous data governance approach for enhancing ethical research policies and practices” (SES 2024269), the project draws on the concept of Indigenous data sovereignty, which is “the right of a nation to govern the collection, ownership, and application of its own data”. The project applies this framework to promote ethical uses of Indigenous data in academic research settings.
Launched in October 2020, the project surveys and analyzes current ethics standards for Indigenous data governance in law, policy, professional guidelines, and scholarly writings from across the CANZUS countries (Canada, Australia, New Zealand, United States). Findings from the analysis will guide efforts to explore gaps and opportunities in existing policies at US academic institutions through surveys and interviews. Project outcomes include resources such as policy recommendations, checklists, curricula, and published scholarship to be used by universities and other stakeholders to foster ethical uses of Indigenous data in research. An Advisory Board and two panels (Indigenous community constituents; data and ethics experts) support the project team with research strategy and analysis.
The project supports NNI’s mission of strengthening Indigenous governance capacities through the Institute’s ongoing work on Indigenous data sovereignty. Related projects include an analysis of tribal research laws from the perspective of Indigenous self-determination (“Indigenous self-determination in US research governance: an analysis of law, policy, and mechanisms”), and an examination of factors that foster ethical studies with Indigenous communities in federally funded research (“Supporting Indigenous scholars as data stewards and leaders in STEM”).