Indigenous Governance Database
Nanibaa’ A. Garrison
Common Rule Revisions to Govern Machine Learning on Indigenous Data: Implementing the Expectations
We agree with Chapman et al. that the Common Rule needs revision, particularly regarding the application of artificial intelligence and machine learning (AI/ML) in health research with Indigenous Peoples. Without greater consideration of collective harms in human subjects research, this…
Genetic Research with Indigenous Peoples: Perspectives on Governance and Oversight in the US
Indigenous Peoples are increasingly exerting governance and oversight over genomic research with citizens of their nations, raising questions about how best to enforce research regulation between American Indian, Alaska Native, and Native Hawaiian peoples and researchers. Using a community-engaged…
Indigenous Peoples and research: self-determination in research governance
Indigenous Peoples are reimagining their relationship with research and researchers through greater self-determination and involvement in research governance. The emerging discourse around Indigenous Data Sovereignty has provoked discussions about decolonizing data practices and highlighted the…
Applying the ‘CARE Principles for Indigenous Data Governance’ to ecology and biodiversity research
Indigenous Peoples are increasingly being sought out for research partnerships that incorporate Indigenous Knowledges into ecology research. In such research partnerships, it is essential that Indigenous data are cared for ethically and responsibly. Here we outline how the ‘CARE Principles for…
Extending the CARE Principles from tribal research policies to benefit sharing in genomic research
Indigenous Peoples have historically been targets of extractive research that has led to little to no benefit. In genomics, such research not only exposes communities to harms and risks of misuse, but also deprives such communities of potential benefits. Tribes in the US have been exercising their…
Using Indigenous Standards to Implement the CARE Principles: Setting Expectations through Tribal Research Codes
Biomedical data are now organized in large-scale databases allowing researchers worldwide to access and utilize the data for new projects. As new technologies generate even larger amounts of data, data governance and data management are becoming pressing challenges. The FAIR principles (Findable,…
Access and Management: Indigenous Perspectives on Genomic Data Sharing
As genomic researchers are encouraged to engage in broad genomic data sharing, American Indian/Alaska Native/Native Hawaiian (AI/AN/NH) leaders have raised questions about ownership of data and biospecimens and concerns over emerging challenges and potential threats to tribal sovereignty. Using a…
Genomic Research Through an Indigenous Lens: Understanding the Expectations
Indigenous scholars are leading initiatives to improve access to genetic and genomic research and health care based on their unique cultural contexts and within sovereign-based governance models created and accepted by their peoples. In the past, Indigenous peoples’ engagement with genomic research…