Indigenous Data Governance: Strategies from United States Native Nations

Data have become the new global currency, and a powerful force in making decisions and wielding power. As the world engages with open data, big data reuse, and data linkage, what do data-driven futures look like for communities plagued by data inequities? Indigenous data stakeholders and non-Indigenous allies have explored this question over the last three years in a series of meetings through the Research Data Alliance (RDA). Drawing on RDA and other gatherings, and a systematic scan of literature and practice, we consider possible answers to this question in the context of Indigenous peoples vis-á-vis two emerging concepts: Indigenous data sovereignty and Indigenous data governance. Specifically, we focus on the data challenges facing Native nations and the intersection of data, tribal sovereignty, and power. Indigenous data sovereignty is the right of each Native nation to govern the collection, ownership, and application of the tribe’s data. Native nations exercise Indigenous data sovereignty through the interrelated processes of Indigenous data governance and decolonizing data. This paper explores the implications of Indigenous data sovereignty and Indigenous data governance for Native nations and others. We argue for the repositioning of authority over Indigenous data back to Indigenous peoples. At the same time, we recognize that there are significant obstacles to rebuilding effective Indigenous data systems and the process will require resources, time, and partnerships among Native nations, other governments, and data agents

Genetic research with Indigenous Peoples: perspectives on governance and oversight in the US

IntroductionIndigenous 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.MethodsUsing a community-engaged research approach, we conducted 42 semi-structured interviews with Tribal leaders, clinicians, researchers, policy makers, and Tribal research review board members about their perspectives on ethical issues related to genetics research with Indigenous Peoples in the US.ResultsWe report findings related to (1) considerations for Indigenous governance, (2) institutional relationships upholding sovereignty, (3) expectations for research approvals, and (4) agreements enacting Indigenous governance. Participants described concerns about different ways of exerting oversight, relationships and agreements between Indigenous Peoples and researchers, and gaps that need to be addressed to strengthen existing governance of genomic data.DiscussionThe results will ultimately guide policy-making and development of new strategies for Indigenous Peoples to enforce oversight in research to promote ethically and culturally appropriate research

Life and times of data access: Regarding Native Lands

It is challenging to understand the full and detailed story of Native People’s lands in the United States. In this article, we contend that reliable and accessible data regarding Native People’s lands complicate and perpetuate those challenges. Stemming from the implications of colonial ideologies, such as the General Allotment Act of 1887, Native Peoples’ land-based data are difficult to access for Tribal Nations and researchers. Land data have been and continue to be obscured by U.S. federal processes and are dependent on unreliable systems of outdated and exclusive practices that consistently marginalize Native Peoples. Therefore, those data do not adequately inform Tribal land planning initiatives. In this article we recommend new processes that strengthen Tribal data sovereignty as the fundamental underpinnings to an inclusive and protected data in the future

Indigenous peoples' data during COVID-19 : from external to internal

This paper explores the particular issues that COVID-19 has highlighted for Indigenous Peoples, focusing on governance. While Indigenous Peoples need timely, relevant, high-quality data to inform their own pandemic response, the collection and use of such data are not without risk. Global disease trackers quantifying the size, spread, and distribution of COVID-19 illustrate the power of data during the pandemic. There are dual concerns about the availability and suppression of COVID-19 data: due to historic and ongoing racism and exclusion, publicly available data can be both beneficial and harmful. Indigenous Data Sovereignty draws upon the United Nations Declaration on the Rights of Indigenous Peoples.Global Affairs Canada (GAC

Indigenous Peoples' Rights in Data: a contribution toward Indigenous Research Sovereignty

Indigenous Peoples' right to sovereignty forms the foundation for advocacy and actions toward greater Indigenous self-determination and control across a range of domains that impact Indigenous Peoples' communities and cultures. Declarations for sovereignty are rising throughout Indigenous communities and across diverse fields, including Network Sovereignty, Food Sovereignty, Energy Sovereignty, and Data Sovereignty. Indigenous Research Sovereignty draws in the sovereignty discourse of these initiatives to consider their applications to the broader research ecosystem. Our exploration of Indigenous Research Sovereignty, or Indigenous self-determination in the context of research activities, has been focused on the relationship between Indigenous Data Sovereignty and efforts to describe Indigenous Peoples' Rights in data

Indigenous Peoples' Rights in Data: a contribution toward Indigenous Research Sovereignty

Indigenous Peoples' right to sovereignty forms the foundation for advocacy and actions toward greater Indigenous self-determination and control across a range of domains that impact Indigenous Peoples' communities and cultures. Declarations for sovereignty are rising throughout Indigenous communities and across diverse fields, including Network Sovereignty, Food Sovereignty, Energy Sovereignty, and Data Sovereignty. Indigenous Research Sovereignty draws in the sovereignty discourse of these initiatives to consider their applications to the broader research ecosystem. Our exploration of Indigenous Research Sovereignty, or Indigenous self-determination in the context of research activities, has been focused on the relationship between Indigenous Data Sovereignty and efforts to describe Indigenous Peoples' Rights in data

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 importance of Indigenous Data Governance to support Indigenous decision-making and control of data. Given that much data are generated from research, Indigenous research governance and Indigenous Data Governance overlap. In this paper, we broaden the concept of Indigenous Data Sovereignty by using the CARE Principles for Indigenous Data Governance to discuss how research legislation and policy adopted by Indigenous Peoples in the US set expectations around recognizing sovereign relationships, acknowledging rights and interests in data, and enabling Indigenous Peoples' participation in research governance

Fostering global data sharing: Highlighting the recommendations of the Research Data Alliance COVID-19 working group

© 2020 Austin CC et al. The systemic challenges of the COVID-19 pandemic require cross-disciplinary collaboration in a global and timely fashion. Such collaboration needs open research practices and the sharing of research outputs, such as data and code, thereby facilitating research and research reproducibility and timely collaboration beyond borders. The Research Data Alliance COVID-19 Working Group recently published a set of recommendations and guidelines on data sharing and related best practices for COVID-19 research. These guidelines include recommendations for researchers, policymakers, funders, publishers and infrastructure providers from the perspective of different domains (Clinical Medicine, Omics, Epidemiology, Social Sciences, Community Participation, Indigenous Peoples, Research Software, Legal and Ethical Considerations). Several overarching themes have emerged from this document such as the need to balance the creation of data adherent to FAIR principles (findable, accessible, interoperable and reusable), with the need for quick data release; the use of trustworthy research data repositories; the use of well-annotated data with meaningful metadata; and practices of documenting methods and software. The resulting document marks an unprecedented cross-disciplinary, cross-sectoral, and cross-jurisdictional effort authored by over 160 experts from around the globe. This letter summarises key points of the Recommendations and Guidelines, highlights the relevant findings, shines a spotlight on the process, and suggests how these developments can be leveraged by the wider scientific community

American Indian Reservations and COVID-19: Correlates of Early Infection Rates in the Pandemic

Objective: To determine the household and community characteristics most closely associated with variation in COVID-19 incidence on American Indian reservations in the lower 48 states. Design: Multivariate analysis with population weights. Setting: Two hundred eighty-seven American Indian Reservations and tribal homelands (in Oklahoma) and, as of April 10, 2020, 861 COVID-19 cases on these reservation lands. Main Outcome Measures: The relationship between rate per 1000 individuals of publicly reported COVID-19 cases at the tribal reservation and/or community level and average household characteristics from the 2018 5-Year American Community Survey records. Results: By April 10, 2020, in regression analysis, COVID-19 cases were more likely by the proportion of homes lacking indoor plumbing (10.83,P= .001) and were less likely according to the percentage of reservation households that were English-only (-2.43,P= .03). Household overcrowding measures were not statistically significant in this analysis (-6.40,P= .326). Conclusions: Failure to account for the lack of complete indoor plumbing and access to potable water in a pandemic may be an important determinant of the increased incidence of COVID-19 cases. Access to relevant information that is communicated in the language spoken by many reservation residents may play a key role in the spread of COVID-19 in some tribal communities. Household overcrowding does not appear to be associated with COVID-19 infections in our data at the current time. Previous studies have identified household plumbing and overcrowding, and language, as potential pandemic and disease infection risk factors. These risk factors persist. Funding investments in tribal public health and household infrastructure, as delineated in treaties and other agreements, are necessary to protect American Indian communities.Open access articleThis item from the UA Faculty Publications collection is made available by the University of Arizona with support from the University of Arizona Libraries. If you have questions, please contact us at [email protected]