data sovereignty

Policy Brief: Native Nation Rebuilding for Tribal Research and Data Governance

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Indigenous Peoples conducted research long before their interactions with European settlers. Whether through observation or practice, research in a non-western context was woven into Indigenous ways of knowing and being. It continues to inform Indigenous Knowledges of landscapes and natural resources, governance systems, intra- and inter-governmental relationships, and behavior. The outcomes of this research are reflected in how Indigenous Peoples understand who they are today. Research in Indigenous communities has evolved—and not always in positive ways. For decades, noncommunity-member researchers, including non-Indigenous researchers, have studied Indigenous Peoples and communities.

Research practices range from collaborative to exploitative, with research outcomes and outputs often intended for the benefit of users outside a particular Native nation or cultural group. Some researchers honor tribal sovereignty in their research practices and seek tribal government and community guidance on research approvals and processes (or are attempting to pivot in this direction). Others have collected data from Indigenous communities for their personal or research advancement without concern for community desires, collected data without consent from Native nations, and misrepresented how data would be used. Such actions have led to contentious engagements among public institutions, researchers, and Indigenous Peoples.

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Hiraldo, Danielle, Stephanie Russo Carroll, Dominique M. David-Chavez, Mary Beth Jäger, and Miriam Jorgensen. 2020. "Native Nation Rebuilding for Tribal Research and Data Governance." NNI Policy Brief Series. Tucson: Native Nations Institute, University of Arizona.

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

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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
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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

Indigenous Data in the Covid-19 Pandemic: Straddling Erasure, Terrorism, and Sovereignty

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On April 10, 2020, Covid-19 case rates on tribal lands were more than four times the rate in the United States.1 Indigenous Peoples across the country continue to be disproportionately impacted by the coronavirus. As of May 18, 2020, the Navajo Nation has the highest Covid-19 case rates surpassing New York, the pandemic’s epicenter in the United States. As the virus spreads, Indigenous Peoples and nations in the United States face stark disparities in accessing resources to protect their communities—not the least of which relate to data. Examples of data dependency and data terrorism continue to reveal themselves during the pandemic. At the same time, Indigenous nations, scholars, and activists are amplifying Indigenous rights and interests in Covid-19-related data. By asserting Indigenous data sovereignty—the right of Indigenous Peoples and nations to govern data about their peoples, lands, and resources2—Indigenous Peoples are focused on tribal control of tribal data and demand visibility in the disaggregation of national, state, and county data to combat the pervasive erasure of Indigenous Peoples due to inadequate data efforts.

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Citation

Carroll, Stephanie Russo; Desi Rodriguez-Lonebear; Randall Akee; Annita Lucchesi; and Jennifer Rai Richards. Indigenous Data in the Covid-19 Pandemic: Straddling Erasure, Terrorism, and Sovereignty. June 11, 2020: Social Sciences Research Council.

Good Data Practices for Indigenous Data Sovereignty

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Indigenous Data Sovereignty (IDS) and Indigenous Data Governance are Indigenous-led movements and practices through which Indigenous peoples are setting their own visions for good data regarding data generated and collected by and about them. IDS movements and practices can be seen as a manifestation of Indigenous peoples' sovereignty more generally and as an alternative vision of data, centreing Indigenous peoples' rights to self-determination and autonomy. IDS also challenges conventional, western colonial data practices, which have been utilised against Indigenous peoples since colonisation and continue to be used against them in the digital environment. The authors set out the context for, and emergence of, IDS movements and provide an overview of IDS developments including the IDS networks such as Te Mana Raraunga, the Maori Data Sovereignty Network in Aotearoa/New Zealand.

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Lovett, Ray, Vanessa Lee, Tahu Kukutai, Stephanie Carroll Rainie, Jennifer Walker. “Good Data Practices for Indigenous Data Sovereignty,” in Angela Daly, Kate Devitt, & Monique Mann (Eds.), Good Data, Amsterdam: Institute of Network Cultures Inc. ISBN 978-94-92302-27-4. http://networkcultures.org/wp-content/uploads/2019/01/Good_Data.pdf

Genetic Research with Indigenous Peoples: Perspectives on Governance and Oversight in the US

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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 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. We report findings related to 1) considerations for Indigenous governance, 2) institutional relationship 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. The 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.

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Indigenous Peoples’ Rights in Data

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This is the one sheeter version of the publication "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.

 

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Citation

Global Indigenous Data Alliance. (2023). “Indigenous Peoples’ Rights in Data.” The Global Indigenous Data Alliance. GIDA-global.org. DOI: 10.6084/m9.figshare.22138160

Science Seminar: Implementing the CARE Principles in Open Data Repositories

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Science Seminar: Implementing the CARE Principles in Open Data Repositories

The people and purpose-oriented CARE Principles (Collective Benefit, Authority to Control, Responsibility, and Ethics) reflect the crucial role of data in advancing innovation, governance, and self-determination among Indigenous Peoples. The CARE Principles complement and extend the more data-centric approach of the FAIR Principles (Findable, Accessible, Interoperable, and Reusable). This webinar is on the CARE Principles and how Indigenous governance and stewardship are recognized by the NSF's NEON Science in their collection of samples on Indigenous lands, air, water, and non-human relations.

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Stephanie Russo Carroll and Global Indigenous Data Alliance. "Science Seminar: Implementing the CARE Principles in Open Data Repositories". Feb. 14, 2023. Video. NEON Science. https://www.youtube.com/watch?v=xVJNd_jzQzg. Accessed Feb 26, 2023.

Transcripts for all videos are available by request. Please email us: nni@arizona.edu.

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Science Seminar: Implementing the CARE Principles in Open Data Repositories

Operationalizing the CARE and FAIR Principles for Indigenous data futures

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As big data, open data, and open science advance to increase access to complex and large datasets for innovation, discovery, and decision-making, Indigenous Peoples’ rights to control and access their data within these data environments remain limited. Operationalizing the FAIR Principles for scientific data with the CARE Principles for Indigenous Data Governance enhances machine actionability and brings people and purpose to the fore to resolve Indigenous Peoples’ rights to and interests in their data across the data lifecycle.

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Citation

Carroll, S.R., Herczog, E., Hudson, M. et al. Operationalizing the CARE and FAIR Principles for Indigenous data futures. Sci Data 8, 108 (2021). https://doi.org/10.1038/s41597-021-00892-0

Working with the CARE principles: operationalising Indigenous data governance

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Shifting the focus of data governance from consultation to values-based relationships to promote equitable Indigenous participation in data processes.

Indigenous data sovereignty is becoming an increasingly relevant topic, as limited opportunities for benefit sharing have focused attention on the protection of Indigenous rights and interests, and participation in data governance. Globally, there are more than 370 million Indigenous people, representing more than 5,000 distinct cultures, across over 90 countries.6 The recent focus on Indigenous data sovereignty has emerged as part of an intricate weaving together of the Indigenous cultural and intellectual property rights (ICIP) discourse with Indigenous research ethics, and the United Nations Declaration on the Rights of Indigenous Peoples (UNDRIP).

 

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Russo, Stephanie Carroll; Maui Hudson; Jarita Holbrook; Simeon Materechera,; Jane Anderson. Working with the CARE principles: operationalising Indigenous data governance November 9, 2020. Ada Lovelace Institute. Blog. Retreived from https://www.adalovelaceinstitute.org/blog/care-principles-operationalis…

Indigenous Data Sovereignty and Policy

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This book examines how Indigenous Peoples around the world are demanding greater data sovereignty, and challenging the ways in which governments have historically used Indigenous data to develop policies and programs. In the digital age, governments are increasingly dependent on data and data analytics to inform their policies and decision-making. However, Indigenous Peoples have often been the unwilling targets of policy interventions and have had little say over the collection, use and application of data about them, their lands and cultures. At the heart of Indigenous Peoples’ demands for change are the enduring aspirations of self-determination over their institutions, resources, knowledge and information systems. With contributors from Australia, Aotearoa New Zealand, North and South America and Europe, this book offers a rich account of the potential for Indigenous data sovereignty to support human flourishing and to protect against the ever-growing threats of data-related risks and harms.

Download individual chapters

 

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Citation

Walter, M. (Ed.), Kukutai, T. (Ed.), Carroll, S. (Ed.), Rodriguez-Lonebear, D. (Ed.). (2021). Indigenous Data Sovereignty and Policy. London: Routledge, https://doi.org/10.4324/9780429273957