Stephanie Russo Carroll

Interests

Teaching

American Indian, Alaska Native, Indigenous health policy,data governance

Research

health and the environment, climate change, governance, American Indian, Alaska Native, Indigenous, sovereignty, community wellness, community development

Courses

Scholarly Contributions

Books

• Walter, M., Kukutai, T., Carroll, S. R., & Rodriguez-Lonebear, D. (2021). Indigenous Data Sovereignty and Policy. Oxford: Routledge.
• Walter, M., Carroll, S., & Rodriguez-Lonebear, D. (2020). Indigenous Data Sovereignty and Policy. Taylor and Francis. doi:10.4324/9780429273957
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  There are an estimated 370 million Indigenous Peoples in over 70 countries worldwide, often facing common issues stemming from colonialism and its ongoing effects. Routledge Studies in Indigenous Peoples and Policy brings together books which explore these concerns, including poverty; health inequalities; loss of land, language and culture; environmental degradation and climate change; intergenerational trauma; and the struggle to have their rights, cultures, and communities protected. Indigenous Peoples across the world are asserting their right to fully participate in policy making that affects their people, their communities, and the natural world, and to have control over their own communities and lands. This book series explores policy issues, reports on policy research, and champions the best examples of methodological approaches. It will explore policy issues from the perspectives of Indigenous Peoples in order to develop evidence-based policy, and create policy-making processes that represent Indigenous Peoples and support positive social change. Edited by Jerry White and Susan Wingert (The University of Western Ontario), this series considers proposals from across indigenous policy subjects. To find out more about how to submit a book proposal, please contact the series editors or Development Studies Editor, Helena Hurd.

Chapters

• Carroll, S. R., Cornell, S., & Jorgensen, M. (2021). Can a Self-Determination Strategy Improve Indigenous Health Care? Evidence from the United States. In Developing Governance and Governing Development: International Case Studies of Indigenous Futures. London: Rowman and Littlefield International.
• Carroll, S. R., Walter, M., & Kukutai, T. (2021). Indigenous Data Sovereignty. In The Indigenous World 2021 (35th Edition)(pp 692-702). Copenhagen, Denmark: International Work Group for Indigenous Affairs (IWGIA).
• Johnson, N., Erickson, K. S., Ferguson, D. B., Jäger, M. B., Jennings, L. L., Juan, A. R., Larson, S., Smythe, W. K., Strawhacker, C., Walker, A., & Carroll, S. R. (2021). The impact of COVID-19 on food access for Alaska Natives in 2020. In Arctic Report Card 2021. Washington, DC: National Oceanic and Atmospheric Administration. doi:https://doi.org/ 10.25923/5cb7-6h06
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  Johnson, N., Erickson, K.S.+, Ferguson, D.B., Jäger, M.B., Jennings, L.L., Juan, A.R.+, Larson, S.+, Smythe, W.K.S., Strawhacker, C., Walker, A.+, Carroll, S.R., 2021: . , T.A. Moon, M.L. Druckenmiller, and R.L. Thoman, Eds. .
• Walter, M., & Carroll, S. R. (2021). Chapter 1: Indigenous Data Sovereignty, Governance and the Link to Indigenous Policy. In Indigenous Data Sovereignty and Policy. Oxford: Routledge.
• Walter, M., Carroll, S. R., Kukutai, T., & Rodriguez-Lonebear, D. (2021). Chapter 14: Embedding systemic change--opportunties and challenges. In Indigenous Data Sovereignty and Policy. Oxford: Routledge.
• Kukutai, T., Carroll, S. R., & Walter, M. (2020). Indigenous Data Sovereignty,” in Mamo, D. (Ed.). In The Indigenous World 2020 (34th Edition)(pp 654-662). Copenhagen, Denmark: International Work Group for Indigenous Affairs (IWGIA).
• Lovett, R., Lee, V., Kukutai, T., Cormack, D., Rainie, S. C., & Martin, J. (2019). Good Data Practices for Indigenous Data Sovereignty and Governance. In Good Data(pp 26-38). Amsterdam: Institute of Network Cultures.
• Rainie, S. C., Kukutai, T., Walter, M., Axelsson, P., Walker, J., & Figuaroa, O. (2019). Open Data & Indigenous Data Sovereignty. In The State of Open Data.
• Rainie, S. C., Kukutai, T., Walter, M., Axelsson, P., Walker, J., & Figuaroa, O. (2018). Public draft: Open Data & Indigenous Data Sovereignty. In The State of Open Data.

Journals/Publications

• Carson, W. O., Cordova-Marks, F. M., Jennings, L. L., & Carroll, S. R. (2025). Reaffirming Indigenous data sovereignty in New Mexico as a result of COVID-19. Frontiers in public health, 13(Issue). doi:10.3389/fpubh.2025.1302655
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  Despite New Mexico's history of working with and enhancing collaboration with the 23 Tribes in the state, data sharing and collaboration with Tribes was poor during the COVID-19 pandemic. New Mexico's policies of state collaboration with Tribes conflicts with the principles of Indigenous Data Sovereignty and fails to recognize Tribal public health authorities. New Mexico state agencies limited what data Tribes and Tribal Organizations received, resulting in the suppression of Tribes' inherent rights. This policy brief concludes with recommendations for the state of New Mexico to respect Tribal sovereignty, uphold the tenants of Indigenous Data Sovereignty, restore trust with Tribes, and support increased capacity and capability of Tribes.
• Carson, W. O., Valenti, M., Begay, K., Carvajal, S., Carroll, S. R., Yuan, N. P., & Cordova-Marks, F. M. (2025). Evaluating Indigenous Identity and Stress as Potential Barriers to Accessing On-Campus Healthcare for Indigenous Students at a Large Southwestern University. International Journal of Environmental Research and Public Health, 22(Issue 9). doi:10.3390/ijerph22091409
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  Introduction: This study examined the relationship between Indigenous identity, perceived stress, and healthcare utilization for Indigenous students on-campus. Methods: Potential participants included undergraduate and graduate Indigenous students from Tribal Nations within the United States. Participants were recruited through community partnerships and in person communication. This survey included the Perceived Stress Scale (PSS-10), the Multiethnic Identity Measure (MEIM), and university Campus Health Service Health and Wellness Survey. Results: 153 Indigenous students from United States-based Tribal Nations participated in this survey. While there appears to be a relationship between Indigenous identity, perceived stress, and Campus Health utilization, the results were not significant for the second tertile (OR: 1.1 (0.4, 2.7)) or third tertile (1.4 (0.5, 3.3)). Students who reported “Yes” or “Unsure” to questions on if their insurance needed them to go outside of the university were far less likely to use Campus Health (Yes OR: 0.2 (0.08–0.5)); (Unsure OR: 0.09 (0.03–0.3)) and CAPS (Yes OR: 0.2 (0.09–0.6)); (Unsure OR: 0.2 (0.04–0.4)). Discussion: This study saw a complex relationship between Indigenous identity, perceived stress, and campus health utilization; however, the findings are not statistically significant. There are distinctions in on campus health care usage when adjusting for undergraduate or graduate student status and health insurance literacy. Conclusion: The research findings offer many promising avenues for future work around Indigenous identity, affordability of healthcare, and importance of health literacy.
• Halmai, N. B., Carroll, S. R., Garba, I., Yracheta, J. M., & Garrison, N. A. (2025). Common Rule Revisions to Govern Machine Learning on Indigenous Data: Implementing the Expectations. American Journal of Bioethics, 25(Issue 2). doi:10.1080/15265161.2024.2441737
• Halmai, N. B., Carroll, S. R., Garba, I., Yracheta, J. M., & Garrison, N. A. (2025). Common Rule Revisions to Govern Machine Learning on Indigenous Data: Implementing the Expectations. The American journal of bioethics : AJOB, 25(2), 73-76.
• Jennings, L., Jones, K., Taitingfong, R., Martinez, A., David-Chavez, D., Alegado, R. ʻ., Tofighi-Niaki, A., Maldonado, J., Thomas, B., Dye, D., Weber, J., Spellman, K. V., Ketchum, S., Duerr, R., Johnson, N., Balch, J., & Carroll, S. R. (2025). Governance of Indigenous data in open earth systems science. Nature Communications, 16(Issue 1). doi:10.1038/s41467-024-53480-2
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  In the age of big data and open science, what processes are needed to follow open science protocols while upholding Indigenous Peoples’ rights? The Earth Data Relations Working Group (EDRWG), convened to address this question and envision a research landscape that acknowledges the legacy of extractive practices and embraces new norms across Earth science institutions and open science research. Using the National Ecological Observatory Network (NEON) as an example, the EDRWG recommends actions, applicable across all phases of the data lifecycle, that recognize the sovereign rights of Indigenous Peoples and support better research across all Earth Sciences.
• Jennings, L., Jones, K., Taitingfong, R., Martinez, A., David-Chavez, D., Alegado, R. ʻ., Tofighi-Niaki, A., Maldonado, J., Thomas, B., Dye, D., Weber, J., Spellman, K. V., Ketchum, S., Duerr, R., Johnson, N., Balch, J., & Carroll, S. R. (2025). Governance of Indigenous data in open earth systems science. Nature communications, 16(1), 572.
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  In the age of big data and open science, what processes are needed to follow open science protocols while upholding Indigenous Peoples' rights? The Earth Data Relations Working Group (EDRWG), convened to address this question and envision a research landscape that acknowledges the legacy of extractive practices and embraces new norms across Earth science institutions and open science research. Using the National Ecological Observatory Network (NEON) as an example, the EDRWG recommends actions, applicable across all phases of the data lifecycle, that recognize the sovereign rights of Indigenous Peoples and support better research across all Earth Sciences.
• Jäger, M. B., Johnson, N., Burk, E., Christensen, N., Ferguson, D. B., Honani, S., Huntington, O., Larson, S., Jennings, L., Johnson, M. K., Juan, A., Strawhacker, C., Taylor, M., Todd, W. F., Walker, A., & Carroll, S. R. (2025). Our lands tell our stories: supporting Indigenous co-led research through the Indigenous Foods Knowledges Network. Arctic Science, 11(Issue). doi:10.1139/as-2024-0063
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  The Indigenous Foods Knowledges Network (IFKN) brings together Indigenous researchers and community leaders from the Arctic and U.S. Southwest along with non-Indigenous researchers to foster cross-cultural interdisciplinary knowledge exchange about sovereignty of Indigenous foods. IFKN draws on cultural and scientific expertise from shared cultural protocols and practices, Indigenous Knowledges, Earth sciences, and social sciences to better understand reclamation, preservation, and perpetuation of traditional food practices to sustain Indigenous food sovereignty in a rapidly changing global environment. In this article, we discuss how IFKN developed a methodology prioritizing relational accountability encompassing both people and place while establishing a framework for collaborative learning that centers Indigenous Knowledge systems. We provide examples from our roles as Tribal community members, university researchers, and network members in creating an organizational framework for this collaborative work and connecting it to community, university, and research protocols and practices. We further describe the ways that IFKN adapted during the COVID-19 pandemic to continue to remotely co-produce knowledge and amplify concerns and priorities of community partners through non-academic settings.
• Lockwood, B. L., Williamson, H. J., Lee, M. S., Carroll, S. R., Rodriguez, N., & Armin, J. S. (2025). Invisible women: unpacking the erasure of Native American women with intellectual and/or developmental disabilities in health surveillance. Critical Public Health, 35(Issue 1). doi:10.1080/09581596.2025.2573208
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  Public health authorities recognize the need for more robust data systems to characterize health inequities, particularly among those with intersectional identities (National Center for Health Statistics, 2023). Currently, it is difficult to describe the health outcomes of Native American women with intellectual and/or developmental disabilities (I/DD), a population for whom key demographic information is unavailable. In this qualitative study, we interviewed 11 experts to understand why this population is not represented in mainstream health surveillance. The findings indicate that the visibility of Native American women with I/DD is influenced by both the institutions that shape data collection and the forms of data that are prioritized in health surveillance. Interview participants highlighted the disability service system and Tribal Nations as important gatekeepers of health data, while pointing out structural constraints that prevent these institutions from meeting the data needs of their constituents. Moreover, participants suggested that Western data systems, which prioritize deficit-based models of disability and rely on quantitative methodology, misrepresent people with disabilities and fail to acknowledge Indigenous ways of knowing. Interviews revealed several pathways to improving data equity, beginning with greater representation of Native American people and people with I/DD in institutions that govern health surveillance.
• Barton, K. S., Porter, K. M., Mai, T., Claw, K. G., Hiratsuka, V. Y., Carroll, S. R., Burke, W., & Garrison, N. A. (2024). Genetic research within Indigenous communities: Engagement opportunities and pathways forward. Genetics in medicine : official journal of the American College of Medical Genetics, 26(7), 101158.
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  Against a historical backdrop of researchers who violated trust through lack of benefit sharing, transparency, and engagement, efforts are underway to develop better approaches for genetic and genomic research with Indigenous communities. To increase engagement, there is a need to understand factors that affect researcher and community collaborations. This study aimed to understand the barriers, challenges, and facilitators of Indigenous Peoples in the United States participating in genetic research.
• Barton, K., Porter, K., Mai, T., Claw, K., Hiratsuka, V., Carroll, S., Burke, W., & Garrison, N. (2024). Genetic research within Indigenous communities: Engagement opportunities and pathways forward. Genetics in Medicine, 26(7). doi:10.1016/j.gim.2024.101158
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  Purpose: Against a historical backdrop of researchers who violated trust through lack of benefit sharing, transparency, and engagement, efforts are underway to develop better approaches for genetic and genomic research with Indigenous communities. To increase engagement, there is a need to understand factors that affect researcher and community collaborations. This study aimed to understand the barriers, challenges, and facilitators of Indigenous Peoples in the United States participating in genetic research. Methods: We conducted 42 semistructured interviews with Tribal leaders, clinicians, researchers, policy makers, and Tribal research review board members across the United States to explore perceived risks, benefits, barriers, and facilitators of genetic research participation. Results: Participants, identifying as Indigenous (88%) or non-Indigenous allies (12%), described their concerns, hesitancy, and fears about genetic research, as well as the roles of trust, transparency, and respect for culture in facilitating partnerships. Previous harms—such as sample and data misuse, stigmatization, or misrepresentation by researchers—revealed strategies for building trust to create more equitable and reciprocal research partnerships. Conclusion: Participants in this study offered strategies for increasing genetic research engagement. The pathway forward should foster transparent research policies and practices to facilitate informed research that supports the needs and priorities of participants, communities, and researchers.
• Carson, W. O., Curley, C., Goldtooth-Halwood, R., McClelland, D. J., Carroll, S. R., Yuan, N. P., Carvajal, S., & Cordova-Marks, F. M. (2024). Examining Indigenous Identity as a Protective Factor in Mental Well-Being Research in the United States: A Scoping Review. International journal of environmental research and public health, 21(11).
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  Due to historical and ongoing structural racism and settler colonialism, Indigenous Peoples and communities in the United States are at a higher risk for a variety of diseases, elevated stress, and negative mental health outcomes. In addition, the United States federal government and the public encourage a view that Indigenous Peoples are primarily a racial group. Federally-, state-, and un-recognized Indigenous Peoples have a collective right to self-determination and sovereignty, and individuals of these Peoples understand this. The goals of this scoping review were to examine what research on identity and mental well-being is currently being conducted with Indigenous populations in the United States, synthesize the results, and determine if researchers are utilizing toolsets and theories that reinforce the sovereignty of Indigenous Peoples, communities, and the individual. The scoping review followed guidelines from the Joanna Briggs Institute guide for Scoping Reviews and the Preferred Reporting Items for Systematic Reviews and Meta-Analyses for Scoping Reviews (PRISMA-ScR). Four databases and over six thousand articles were searched for this review, with twenty-four that had data extracted and analyzed. Current research on the relationship between Indigenous identity and mental well-being shows mixed results. The findings of this scoping review highlight a need for Indigenous-specific tools for measuring identity in place of tools used for other ethnic and racial groups. More research must be conducted to create tools that specifically examine the phenomena of United States-based Indigenous identity.
• David-Chavez, D., Gavin, M., Ortiz, N., Valdez, S., & Carroll, S. (2024). A values-centered relational science model: supporting Indigenous rights and reconciliation in research. Ecology and Society, 29(2). doi:10.5751/es-14768-290211
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  Addressing complex social-ecological issues requires all relevant sources of knowledge and data, especially those held by communities who remain close to the land. Centuries of oppression, extractive research practices, and misrepresentation have hindered balanced knowledge exchange with Indigenous communities and inhibited innovation and problem-solving capacity in all scientific fields. A recent shift in the research landscape reflects a growing interest in engaging across diverse communities and ways of knowing. Scientific discussions increasingly highlight the inherent value of Indigenous environmental ethics frameworks and processes as the original roadmaps for sustainable development planning, including their potential in addressing the climate crisis and related social and environmental concerns. Momentum in this shift is also propelled by an increasing body of research evidencing the role of Indigenous land stewardship for maintaining ecological health and biodiversity. However, a key challenge straining this movement lies rooted in colonial residue and ongoing actions that suppress and co-opt Indigenous knowledge systems. Scientists working with incomplete datasets privilege a handful of narratives, conceptual understandings, languages, and historical contexts, while failing to engage thousands of collective bodies of intergenerational, place-based knowledge systems. The current dominant colonial paradigm in scientific research risks continued harmful impacts to Indigenous communities that sustain diverse knowledge systems. Here, we outline how ethical standards in researcher practice can be raised in order to reconcile colonial legacies and ongoing settler colonial practices. We synthesize across Indigenous and community-based research protocols and frameworks, transferring knowledge across disciplines, and ground truthing methods and processes in our own practice, to present a relational science working model for supporting Indigenous rights and reconciliation in research. We maintain that core Indigenous values of integrity, respect, humility, and reciprocity should shape researcher responsibilities and methods applied in order to raise ethical standards and long-term relational accountability regarding Indigenous lands, rights, communities, and our shared futures.
• Duerr, R., Taitingfong, R., Martinez, A., Vera, L., Jennings, L., Downs, R., Antognoli, E., Brink, T., Halmai, N., David-Chavez, D., Carroll, S., Hudson, M., Buttigieg, P., & O’brien, M. (2024). Earth Science Data Repositories: Implementing the CARE Principles. Data Science Journal, 23(Issue). doi:10.5334/dsj-2024-037
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  Datasets carry cultural and political context at all parts of the data life cycle. Historically, Earth science data repositories have taken their guidance and policies as a combination of mandates from their funding agencies and the needs of their user communities, typically universities, agencies, and researchers. Consequently, repository practices have rarely taken into consideration the needs of other communities such as the Indigenous Peoples on whose lands data are often acquired. In recent years, a number of global efforts have worked to improve the conduct of research as well as data policy and practices by the repositories that hold and disseminate it. One of these established the CARE Principles for Indigenous Data Governance (Carroll et al. 2020), representing ‘Collective Benefit’, ‘Authority to Control’, ‘Responsibility’, and ‘Ethics”’ hosted by the Global Indigenous Data Alliance (GIDA 2023a). In order to align to the CARE Principles, repositories may need to update their policies, architecture, service offerings, and their collaboration models. The question is how? Operationalizing principles into active repositories is generally a fraught process. This paper captures perspectives and recommendations from many of the repositories that are members of the Earth Science Information Partners (ESIPFed, n.d.) in conjunction with members of the Collaboratory for Indigenous Data Governance (Collaboratory for Indigenous Data Governance n.d.) and GIDA, defines and prioritizes the set of activities Earth and Environmental repositories can take to better adhere to CARE Principles in the hopes that this will help implementation in repositories globally.
• Garba, I., & Carroll, S. R. (2024). The UN Declaration on the Rights of Indigenous Peoples and Genomics: Ethical Complementarity for Just Research. Hastings Center Report, 54(Issue 2). doi:10.1002/hast.4937
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  Governance of biomedical research in the United States has been characterized by ethical individualism, a mode of reasoning that treats the individual person as the center of moral concern and analysis. However, genomics research raises ethics issues that uniquely affect certain genetically related communities as collectives, not merely as aggregates of individuals. This is especially true of identifiable populations—including Indigenous Peoples—that are often minoritized, socially marginalized, or geographically isolated. We propose an alternative, complementary framework based on the United Nations Declaration on the Rights of Indigenous Peoples (UNDRIP) (2007), which explicitly recognizes both individual and collective rights. We use the CARE Principles for Indigenous Data Governance as a case study to show how this UNDRIP-based framework can complement the individual-focused national standard for research oversight represented by the Belmont principles, thereby better protecting Indigenous Peoples’ rights and interests in genomic data.
• Garba, I., & Carroll, S. R. (2024). The UN Declaration on the Rights of Indigenous Peoples and Genomics: Ethical Complementarity for Just Research. The Hastings Center report, 54 Suppl 2, S120-S125.
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  Governance of biomedical research in the United States has been characterized by ethical individualism, a mode of reasoning that treats the individual person as the center of moral concern and analysis. However, genomics research raises ethics issues that uniquely affect certain genetically related communities as collectives, not merely as aggregates of individuals. This is especially true of identifiable populations-including Indigenous Peoples-that are often minoritized, socially marginalized, or geographically isolated. We propose an alternative, complementary framework based on the United Nations Declaration on the Rights of Indigenous Peoples (UNDRIP) (2007), which explicitly recognizes both individual and collective rights. We use the CARE Principles for Indigenous Data Governance as a case study to show how this UNDRIP-based framework can complement the individual-focused national standard for research oversight represented by the Belmont principles, thereby better protecting Indigenous Peoples' rights and interests in genomic data.
• Taitingfong, R., Martinez, A., Hudson, M., Lovett, R., Maher, B., Prehn, J., Rowe, R. K., Boileau, K., Franks, A., Khan, S., Walker, J. D., & Carroll, S. R. (2024). Aligning policy and practice to implement CARE with FAIR through Indigenous Peoples’ protocols. Acta Borealia, 41(Issue 2). doi:10.1080/08003831.2024.2410112
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  In 2019, members of the Global Indigenous Data Alliance (GIDA) published the CARE Principles (Collective Benefit, Authority to Control, Responsibility, and Ethics) for Indigenous Data Governance (IDGov). CARE has since been referenced, leveraged, and adopted in various ways across disciplines and sectors worldwide. In this article, GIDA members from Aotearoa New Zealand, Australia, Canada, and the United States share examples of IDGov models that predate and emerged after the development of CARE. Together, we reflect upon the affordances and limitations of the broad uptake of CARE. We argue that renewed attention is needed to the original intent of CARE: to direct data actors to local communities’ protocols and frameworks for IDGov, and to transform institutional policies and practices to fortify Indigenous Peoples’ authority to control their data.
• Wutich, A., Nelson, R., DuBois, L. Z., Astorino, C. M., Knudson, K., Reynolds, A. W., Riley, E. P., Smith, R. W., VanSickle, C., Carroll, S. R., Connors, C. K., Jankovic-Rankovic, J., Mitchell, C., Roque, A. D., & Tsosie, K. S. (2024). “Rigorous and Systematic Qualitative Data Analysis in Biological Anthropology”. American Journal of Biological Anthropology, 186(Issue 78). doi:10.1002/ajpa.70008
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  Biological anthropologists have long engaged in qualitative data analysis (QDA), though such work is not always foregrounded. In this article, we discuss the role of rigorous and systematic QDA in biological anthropology and consider how it can be understood and advanced. We first establish what kinds of qualitative data and analysis are used in biological anthropology. We then review the ways QDA has been used in six subfields of biological anthropology: primatology, human biology, paleoanthropology, dental and skeletal biology, bioarchaeology, and anthropological genetics. We follow that with an overview of how to use QDA methods: three simple QDA methods (i.e., word-based analysis, theme analysis, and coding) and three QDA approaches for model-building and model-testing (i.e., content analysis, semantic network analysis, and grounded theory). With this foundation in place, we discuss how QDA can support transformative research in biological anthropology—emphasizing the valuable role of QDA in inductive and community-based research. We discuss how QDA supports transformative research using mixed-methods research designs, participatory action research, and abolition and Black feminist research. Finally, we consider how to close a QDA project, reflecting on the logistics, ethics, and limitations of qualitative data sharing, including how researchers can use the CARE Principles (Collective Benefit, Authority to Control, Responsibility, and Ethics) to support Indigenous data sovereignty.
• Brewer, J. P., Carroll, S. R., Bartecchi, D., Chesnais, A. K., & Johnson, M. K. (2023). Life and times of data access: Regarding Native Lands. Environment and Planning F, 2(1-2), 305-315. doi:10.1177/26349825231164616
• Cummins, J., Soto, A., Anderson, J., Gosart, U., Ward, A., & Carroll, S. (2023). Enhancing Stewardship of Indigenous Peoples’ Data, Information, and Knowledges in Libraries and Archives through Indigenous Data Governance. Library Trends, 72(1). doi:10.1353/lib.2023.a938211
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  This article provides foundational definitions connected to Indigenous Peoples’ data in relation to information institutions, specifically libraries and archives. The authors explain the relationship between Indigenous Data Sovereignty (IDSov) and Indigenous Data Governance (IDGov) before moving into a general overview of norms and principles related to enhancing IDSov and implementing IDGov and finishing with the CARE Principles for Indigenous Data Governance (Collective Benefit, Authority to Control, Responsibility, and Ethics). This article also provides examples of the application and implementation of the CARE Principles in libraries and archives, including Community-Driven Archives, Indigenous Librarianship, Local Contexts Labels and Notices in Libraries, and Language Materials. This article concludes with recommendations for applying the CARE Principles in information institutions. The purpose of the article’s information is to provide foundational article, definitions, resources, and perspectives for information institutions and professionals, specifically librarians and archivists, to support IDSov and apply and use IDGov principles from Indigenous Peoples’ viewpoints. The authors’ intention is to show the importance of this work in communities, not just in information institutions. This article also highlights the importance of Indigenous librarianship when operationalizing IDGov. This article acknowledges the work being done in various information institutions to de-silo information practices and incorporate Indigenous Peoples’ perspectives.
• Garba, I., Sterling, R., Plevel, R., Carson, W., Cordova-Marks, F. M., Cummins, J., Curley, C., David-Chavez, D., Fernandez, A., Hiraldo, D., Hiratsuka, V., Hudson, M., Jäger, M. B., Jennings, L. L., Martinez, A., Yracheta, J., Garrison, N. A., & Carroll, S. R. (2023). Indigenous Peoples and research: self-determination in research governance. Frontiers in research metrics and analytics, 8, 1272318.
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  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.
• Garrison, N. A., & Carroll, S. R. (2023). Genetic research with Indigenous Peoples: perspectives on governance and oversight in the US. Frontiers in research metrics and analytics, 8, 1286948.
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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.
• Hudson, M., Carroll, S. R., Anderson, J., Blackwater, D., Cordova-Marks, F. M., Cummins, J., David-Chavez, D., Fernandez, A., Garba, I., Hiraldo, D., Jäger, M. B., Jennings, L. L., Martinez, A., Sterling, R., Walker, J. D., & Rowe, R. K. (2023). Indigenous Peoples' Rights in Data: a contribution toward Indigenous Research Sovereignty. Frontiers in research metrics and analytics, 8, 1173805.
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  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.
• Hudson, M., Carroll, S., Anderson, J., Blackwater, D., Cordova-Marks, F., Cummins, J., David-Chavez, D., Fernandez, A., Garba, I., Hiraldo, D., Jennings, L., Martinez, A., Sterling, R., Walker, J., Rowe, R., & Jäger, M. (2023). Indigenous Peoples' Rights in Data: a contribution toward Indigenous Research Sovereignty. Frontiers in Research Metrics and Analytics, 8(Issue). doi:10.3389/frma.2023.1173805
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  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.
• Jennings, L., Anderson, T., Martinez, A., Sterling, R., Chavez, D. D., Garba, I., Hudson, M., Garrison, N. A., & Carroll, S. R. (2023). Applying the 'CARE Principles for Indigenous Data Governance' to ecology and biodiversity research. Nature ecology & evolution, 7(10), 1547-1551.
• Jennings, L., Anderson, T., Martinez, A., Sterling, R., Chavez, D. D., Garba, I., Hudson, M., Garrison, N. A., & Carroll, S. R. (2023). Applying the ‘CARE Principles for Indigenous Data Governance’ to ecology and biodiversity research. Nature Ecology and Evolution, 7(Issue 10). doi:10.1038/s41559-023-02161-2
• Leonard, K., David-Chavez, D., Smiles, D., Jennings, L., Alegado, R., Tsinnajinnie, L., Manitowabi, J., Arsenault, R., Begay, R., Kagawa-Viviani, A., Davis, D., van Uitregt, V., Pichette, H., Liboiron, M., Moggridge, B., Carroll, S., Tsosie, R., & Gomez, A. (2023). Water Back: A Review Centering Rematriation and Indigenous Water Research Sovereignty. Water Alternatives, 16(2).
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  The recent Land Back movement has catalysed global solidarity towards addressing the oppression and dispossession of Indigenous Peoples’ Lands and territories. Largely absent from the discourse, however, is a discussion of the alienation of Indigenous Peoples from Water by settler-colonial states. Some Indigenous Water Protectors argue that there cannot be Land Back without Water Back. In response to this emergent movement of Water Back, this review of research by Indigenous and non-Indigenous writers traces the discursive patterns of Indigenous Water relationships and rematriation across themes of colonialism, climate change, justice, health, rights, responsibilities, governance and cosmology. It advances a holistic conceptualization of Water Back as a framework for future research sovereignty, focusing mainly on instances in Canada, Australia, Aotearoa New Zealand, and the United States. We present the findings on the current global Waterscape of Indigenous-led research on Indigenous Water issues. Water Back offers an important framework centring Indigenous ways of knowing, doing, and being as a foundation for advancing Indigenous Water research.
• Van Horne, Y. O., Carroll, S. R., Chief, K., Lothrop, N. Z., Richards, J. R., Begay, M. G., Charley, P. H., Ingram, J. C., & Beamer, P. I. (2023). Using environmental health dialogue in a Diné-centered approach for individualized results reporting in an environmental exposure study following the Gold King Mine Spill. Environmental Research, 231. doi:10.1016/j.envres.2023.116196
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  Background: On August 5, 2015, the Gold King Mine Spill (GKMS) resulted in 3 million gallons of acid mine drainage spilling into the San Juan River impacting the Diné Bikeyah (traditional homelands of the Navajo people). The Gold King Mine Spill Diné Exposure Project was formed to understand the impacts of the GKMS on the Diné (Navajo). Reporting individualized household results in an exposure study is becoming more common; however, materials are often developed with limited community input with knowledge flowing in one direction - from researcher to participant. In this study we examined the development, dissemination, and evaluation of individualized results materials. Methods: In August 2016, Navajo Nation Community Health Representatives (Navajo CHRs) sampled household water, dust, and soil, and resident blood and urine for lead and arsenic, respectively. From May–July 2017, iterative dialogue with a wide range of community partners and a community focus groups guided the development of a culturally-based dissemination process. In August 2017, Navajo CHRs reported individualized results and they surveyed the participants on the report-back process at that time. Results: All of the 63 Diné adults (100%) who participated in the exposure study received their results by a CHR in person and 42 (67%) completed an evaluation. Most of those participants (83%) were satisfied with the result packets. Respondents ranked the individual and overall household results as the most important information they received (69% and 57%, respectively), while information on metals exposures and their health effects were the least helpful. Conclusions: Our project illustrates how a model of environmental health dialogue, defined by iterative, multidirectional communication among Indigenous community members, trusted Indigenous leaders, Indigenous researchers, non-Indigenous researchers, can improve reporting individualized study results. Findings can inform future research to encourage multi-directional environmental health dialogue to craft more culturally responsive and effective dissemination and communication materials.
• Van Horne, Y. O., Carroll, S. R., Chief, K., Lothrop, N. Z., Richards, J. R., Begay, M. G., Charley, P. H., Ingram, J. C., & Beamer, P. I. (2023). Using environmental health dialogue in a Diné-centered approach for individualized results reporting in an environmental exposure study following the Gold King Mine Spill. Environmental research, 231(Pt 2), 116196.
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  On August 5, 2015, the Gold King Mine Spill (GKMS) resulted in 3 million gallons of acid mine drainage spilling into the San Juan River impacting the Diné Bikeyah (traditional homelands of the Navajo people). The Gold King Mine Spill Diné Exposure Project was formed to understand the impacts of the GKMS on the Diné (Navajo). Reporting individualized household results in an exposure study is becoming more common; however, materials are often developed with limited community input with knowledge flowing in one direction - from researcher to participant. In this study we examined the development, dissemination, and evaluation of individualized results materials.
• Carroll, S. R., Garba, I., Plevel, R., Small-Rodriguez, D., Hiratsuka, V. Y., Hudson, M., & Garrison, N. A. (2022). Using Indigenous Standards to Implement the CARE Principles: Setting Expectations through Tribal Research Codes. Frontiers in genetics, 13, 823309.
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  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, Accessible, Interoperable, and Reusable) were developed to facilitate data sharing. However, the Indigenous Data Sovereignty movement advocates for greater Indigenous control and oversight in order to share data on Indigenous Peoples' terms. This is especially true in the context of genetic research where Indigenous Peoples historically have been unethically exploited in the name of science. This article outlines the relationship between sovereignty and ethics in the context of data to describe the collective rights that Indigenous Peoples assert to increase control over their biomedical data. Then drawing on the CARE Principles for Indigenous Data Governance (Collective benefit, Authority to control, Responsibility, and Ethics), we explore how standards already set by Native nations in the United States, such as tribal research codes, provide direction for implementation of the CARE Principles to complement FAIR. A broader approach to policy and procedure regarding tribal participation in biomedical research is required and we make recommendations for tribes, institutions, and ethical practice.
• Carroll, S. R., Plevel, R., Jennings, L. L., Garba, I., Sterling, R., Cordova-Marks, F. M., Hiratsuka, V., Hudson, M., & Garrison, N. A. (2022). Extending the CARE Principles from tribal research policies to benefit sharing in genomic research. Frontiers in Genetics, 13(Issue). doi:10.3389/fgene.2022.1052620
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  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 sovereignty to limit this extractive practice by adopting laws and policies to govern research on their territories and with their citizens. Federally and state recognized tribes are in the strongest position to assert research oversight. Other tribes lack the same authority, given that federal and state governments do not recognize their rights to regulate research, resulting in varying levels of oversight by tribes. These governance measures establish collective protections absent from the US federal government’s research oversight infrastructure, while setting expectations regarding benefits to tribes as political collectives. Using a legal epidemiology approach, the paper discusses findings from a review of Tribal research legislation, policy, and administrative materials from 26 tribes in the US. The discussion specifies issues viewed by tribes as facilitators and barriers to securing benefits from research for their nations and members/citizens, and describes preemptive and mitigating strategies pursued by tribes in response. These strategies are set within the framing of the CARE Principles for Indigenous Data Governance (Collective Benefit, Authority to Control, Responsibility, Ethics), a set of standards developed to ensure that decisions made about data pertaining to Indigenous communities at the individual and tribal levels are responsive to their values and collective interests. Our findings illustrate gaps to address for benefit sharing and a need to strengthen Responsibility and Ethics in tribal research governance.
• Carroll, S. R., Plevel, R., Jennings, L. L., Garba, I., Sterling, R., Cordova-Marks, F. M., Hiratsuka, V., Hudson, M., & Garrison, N. A. (2022). Extending the CARE Principles from tribal research policies to benefit sharing in genomic research. Frontiers in genetics, 13, 1052620.
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  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 sovereignty to limit this extractive practice by adopting laws and policies to govern research on their territories and with their citizens. Federally and state recognized tribes are in the strongest position to assert research oversight. Other tribes lack the same authority, given that federal and state governments do not recognize their rights to regulate research, resulting in varying levels of oversight by tribes. These governance measures establish collective protections absent from the US federal government's research oversight infrastructure, while setting expectations regarding benefits to tribes as political collectives. Using a legal epidemiology approach, the paper discusses findings from a review of Tribal research legislation, policy, and administrative materials from 26 tribes in the US. The discussion specifies issues viewed by tribes as facilitators and barriers to securing benefits from research for their nations and members/citizens, and describes preemptive and mitigating strategies pursued by tribes in response. These strategies are set within the framing of the CARE Principles for Indigenous Data Governance (Collective Benefit, Authority to Control, Responsibility, Ethics), a set of standards developed to ensure that decisions made about data pertaining to Indigenous communities at the individual and tribal levels are responsive to their values and collective interests. Our findings illustrate gaps to address for benefit sharing and a need to strengthen Responsibility and Ethics in tribal research governance.
• Carroll, S. R., Suina, M., Jäger, M. B., Black, J., Cornell, S., Gonzales, A. A., Jorgensen, M., Palmanteer-Holder, N. L., De La Rosa, J. S., & Teufel-Shone, N. I. (2022). Reclaiming Indigenous Health in the US: Moving beyond the Social Determinants of Health. International Journal of Environmental Research and Public Health, 19(Issue 12). doi:10.3390/ijerph19127495
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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.
• Carroll, S. R., Suina, M., Jäger, M. B., Black, J., Cornell, S., Gonzales, A. A., Jorgensen, M., Palmanteer-Holder, N. L., De La Rosa, J. S., & Teufel-Shone, N. I. (2022). Reclaiming Indigenous Health in the US: Moving beyond the Social Determinants of Health. International journal of environmental research and public health, 19(12).
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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 . 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.
• Dreifuss, H. M., Yuan, N. P., Russo Carroll, S., Bauer, M. C., & Teufel-Shone, N. I. (2022). Utilizing Digital Storytelling to Develop a Public Health Professions Pathway for Native American High School Students. Health promotion practice, 15248399221135586.
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  Digital storytelling is a decentering methodology in health promotion that positions the storyteller as an expert to create a narrative of their lived experiences. This article describes using a two-phase digital storytelling process within the Diné (Navajo) Educational Philosophy framework to guide the development of a culturally grounded curriculum plan that actively engages Diné youth in exploring health professions pathways in their community. The first phase consisted of developing a high school digital storytelling team by training three Diné youth attending high school on the Navajo Nation located in southwest United States, in digital storytelling. In the second phase, the high school digital storytelling team worked collaboratively with seven Diné students enrolled at the local tribal college to develop digital stories about navigating from high school to college. Data from seven completed digital stories were analyzed with assistance from a community advisory board to identify asset-based themes that contributed to positively transitioning from high school to a tribal college. The results revealed several strategies for successful transitions from high school to a public health college major. The culturally relevant strategies and stories were incorporated into a school-based health professions pathway curriculum plan for Diné youth.
• Khan, S. M., Farland, L. V., Catalfamo, C. J., Austhof, E., Bell, M. L., Chen, Z., Cordova-Marks, F., Ernst, K. C., Garcia-Filion, P., Heslin, K. M., Hoskinson, J., Jehn, M. L., Joseph, E. C., Kelley, C. P., Klimentidis, Y., Russo Carroll, S., Kohler, L. N., Pogreba-Brown, K., & Jacobs, E. T. (2022). Elucidating symptoms of COVID-19 illness in the Arizona CoVHORT: A longitudinal cohort study. BMJ Open, 12(Issue 1). doi:10.1136/bmjopen-2021-053403
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  Objective To elucidate the symptoms of laboratory-confirmed COVID-19 cases as compared with laboratory-confirmed negative individuals and to the untested general population among all participants who reported symptoms within a large prospective cohort study. Setting and design This work was conducted within the framework of the Arizona CoVHORT, a longitudinal prospective cohort study conducted among Arizona residents. Participants Eligible participants were any individual living in Arizona and were recruited from across Arizona via COVID-19 case investigations, participation in testing studies and a postcard mailing effort. Primary and secondary outcome measures The primary outcome measure was a comparison of the type and frequency of symptoms between COVID-19-positive cases, tested but negative individuals and the general untested population who reported experiencing symptoms consistent with COVID-19. Results Of the 1335 laboratory-confirmed COVID-19 cases, 180 (13.5%) reported having no symptoms. Of those that did report symptoms, the most commonly reported were fatigue (82.2%), headache (74.6%), aches, pains or sore muscles (66.3%), loss of taste or smell (62.8) and cough (61.9%). In adjusted logistic regression models, COVID-19-positive participants were more likely than negative participants to experience loss of taste and smell (OR 12.1; 95% CI 9.6 to 15.2), bone or nerve pain (OR 3.0; 95% CI 2.2 to 4.1), headache (OR 2.6; 95% CI 2.2 to 3.2), nausea (OR 2.4; 95% CI 1.9 to 3.1) or diarrhoea (OR 2.1; 95% CI 1.7 to 2.6). Fatigue (82.9) and headache (74.9) had the highest sensitivities among symptoms, while loss of taste or smell (87.2) and bone or nerve pain (92.9) had the high specificities among significant symptoms associated with COVID-19. Conclusion When comparing confirmed COVID-19 cases with either confirmed negative or untested participants, the pattern of symptoms that discriminates SARS-CoV-2 infection from those arising from other potential circulating pathogens may differ from general reports of symptoms among cases alone.
• Khan, S. M., Farland, L. V., Catalfamo, C. J., Austhof, E., Bell, M. L., Chen, Z., Cordova-Marks, F., Ernst, K. C., Garcia-Filion, P., Heslin, K. M., Hoskinson, J., Jehn, M. L., Joseph, E. C., Kelley, C. P., Klimentidis, Y., Russo Carroll, S., Kohler, L. N., Pogreba-Brown, K., & Jacobs, E. T. (2022). Elucidating symptoms of COVID-19 illness in the Arizona CoVHORT: a longitudinal cohort study. BMJ open, 12(1), e053403.
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  To elucidate the symptoms of laboratory-confirmed COVID-19 cases as compared with laboratory-confirmed negative individuals and to the untested general population among all participants who reported symptoms within a large prospective cohort study.
• Laluk, N., Montgomery, L., Tsosie, R., McCleave, C., Miron, R., Carroll, S., Aguilar, J., Thompson, A., Nelson, P., Sunseri, J., Trujillo, I., Deantoni, G., Castro, G., & Schneider, T. (2022). Archaeology and Social Justice in Native America. American Antiquity, 87(4). doi:10.1017/aaq.2022.59
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  Over the past 20 years, collaboration has become an essential aspect of archaeological practice in North America. In paying increased attention to the voices of descendant and local communities, archaeologists have become aware of the persistent injustices these often marginalized groups face. Building on growing calls for a responsive and engaged cultural heritage praxis, this forum article brings together a group of Native and non-Native scholars working at the nexus of history, ethnography, archaeology, and law in order to grapple with the role of archaeology in advancing social justice. Contributors to this article touch on a diverse range of critical issues facing Indigenous communities in the United States, including heritage law, decolonization, foodways, community-based participatory research, and pedagogy. Uniting these commentaries is a shared emphasis on research practices that promote Indigenous sovereignty and self-determination. In drawing these case studies together, we articulate a sovereignty-based model of social justice that facilitates Indigenous control over cultural heritage in ways that address their contemporary needs and goals.
• Laluk, N., Montgomery, L., Tsosie, R., Mccleave, C., Miron, R., Carroll, S., Aguilar, J., Thompson, A., Nelson, P., Sunseri, J., Trujillo, I., Deantoni, G., Castro, G., & Schneider, T. (2022). Erratum: Archaeology and Social Justice in Native America (American Antiquity (2022) 87 (659-682) DOI: 10.1017/aaq.2022.59). American Antiquity, 87(4). doi:10.1017/aaq.2022.89
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  The original publication of this article (Laluk et al. 2022) contained two errors in the names of the authors: incorrect capitalization in the name of author DeAntoni and a missing middle initial in the name of author Schneider. The article has since been corrected.
• Teufel-Shone, N. I., De La Rosa, J. S., Palmanteer-Holder, N. L., Jorgensen, M., Gonzales, A. A., Cornell, S. E., Black, J., Jaeger, M. B., Suina, M., & Carroll, S. R. (2022). Reclaiming Indigenous Health in the US: Moving beyond the Social Determinants of Health. International Journal of Environmental Research and Public Health, 19, 7495-7507. doi:10.3390/ijerph19127495
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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.
• Austin, C. C., Bernier, A., Bezuidenhout, L., Bicarregui, J., Biro, T., Cambon-Thomsen, A., Carroll, S. R., Cournia, Z., Dabrowski, P. W., Diallo, G., Duflot, T., Garcia, L., Gesing, S., Gonzalez-Beltran, A., Gururaj, A., Harrower, N., Lin, D., Medeiros, C., Méndez, E., , Meyers, N., et al. (2021). Fostering global data sharing: highlighting the recommendations of the Research Data Alliance COVID-19 working group. Wellcome Open Research, 5(Issue). doi:10.12688/wellcomeopenres.16378.2
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  The systemic challenges of the COVID-19 pandemic require crossdisciplinary 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 clinicians, researchers, policy- and decision-makers, funders, publishers, public health experts, disaster preparedness and response experts, infrastructure providers from the perspective of different domains (Clinical Medicine, Omics, Epidemiology, Social Sciences, Community Participation, Indigenous Peoples, Research Software, Legal and Ethical Considerations), and other potential users. 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, crosssectoral, 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.
• Carroll, S. R., Akee, R., Chung, P., Cormack, D., Kukutai, T., Lovett, R., Suina, M., & Rowe, R. K. (2021). Indigenous Peoples' Data During COVID-19: From External to Internal. Frontiers in Sociology, 6(Issue). doi:10.3389/fsoc.2021.617895
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  Global disease trackers quantifying the size, spread, and distribution of COVID-19 illustrate the power of data during the pandemic. Data are required for decision-making, planning, mitigation, surveillance, and monitoring the equity of responses. 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. Systemic policies related to genocide and racism, and historic and ongoing marginalization, have led to limitations in quality, quantity, access, and use of Indigenous Peoples' COVID-19 data. Governments, non-profits, researchers, and other institutions must collaborate with Indigenous Peoples on their own terms to improve access to and use of data for effective public health responses to COVID-19.
• Carroll, S. R., Akee, R., Chung, P., Cormack, D., Kukutai, T., Lovett, R., Suina, M., & Rowe, R. K. (2021). Indigenous Peoples' Data During COVID-19: From External to Internal. Frontiers in sociology, 6, 617895.
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  Global disease trackers quantifying the size, spread, and distribution of COVID-19 illustrate the power of data during the pandemic. Data are required for decision-making, planning, mitigation, surveillance, and monitoring the equity of responses. 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. Systemic policies related to genocide and racism, and historic and ongoing marginalization, have led to limitations in quality, quantity, access, and use of Indigenous Peoples' COVID-19 data. Governments, non-profits, researchers, and other institutions must collaborate with Indigenous Peoples to improve access to and use of data for effective public health responses to COVID-19.
• Carroll, S. R., Gardner-Vandy, K., Scalice, D., Chavez, J. C., David-Chavez, D. M., Daniel, K. J., Gonzales, E., Lee, A., Waterhouse, J., Yracheta, J. M., Gorospe, G., Goordial, J., Hudson, M., Williams, J., McCoy, T. J., Cadue-Blackwood, C., Atencio, J., Seyler, L., Carron, A., , Cabrol, N., et al. (2021). Relationships First and Always: A Guide to Collaborations with Indigenous Communities. Bulletin of the AAS, 53(4). doi:10.3847/25c2cfeb.0de1af1a
• Carroll, S. R., Herczog, E., Hudson, M., Russell, K., & Stall, S. (2021). Operationalizing the CARE and FAIR Principles for Indigenous data futures. Scientific Data, 8(Issue 1). doi:10.1038/s41597-021-00892-0
• Carroll, S. R., Herczog, E., Hudson, M., Russell, K., & Stall, S. (2021). Operationalizing the CARE and FAIR Principles for Indigenous data futures. Scientific data, 8(1), 108.
• Gardner-Vandy, K., Scalice, D., Chavez, J. C., David-Chavez, D. M., Daniel, K. J., Gonzales, E., Lee, A., Waterhouse, J., Yracheta, J. M., Gorospe, G., Goordial, J., Hudson, M., Carroll, S. R., Williams, J., McCoy, T. J., Cadeu-Blackwood, C., Atencio, J., Seyler, L., Carron, A., , Cabrol, N., et al. (2021). Relationships First and Always: A Guide to Collaborations with Indigenous Communities. Bulletin of the American Astronomical Society, 53(4). doi:10.3847/25c2cfeb.0de1af1a
• Hiraldo, D., James, K., & Carroll, S. R. (2021). Case Report: Indigenous Sovereignty in a Pandemic: Tribal Codes in the United States as Preparedness. Frontiers in Sociology, 6(Issue). doi:10.3389/fsoc.2021.617995
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  Indigenous Peoples globally and in the United States have combatted and continue to face disease, genocide, and erasure, often the systemic result of settler colonial policies that seek to eradicate Indigenous communities. Many Native nations in the United States have asserted their inherent sovereign authority to protect their citizens by passing tribal public health and emergency codes to support their public health infrastructures. While the current COVID-19 pandemic affects everyone, marginalized and Indigenous communities in the United States experience disproportionate burdens of COVID-19 morbidity and mortality as well as socioeconomic and environmental impacts. In this brief research report, we examine 41 publicly available tribal public health and emergency preparedness codes to gain a better understanding of the institutional public health capacity that exists during this time. Of the codes collected, only nine mention any data sharing provisions with local, state, and federal officials while 21 reference communicable diseases. The existence of these public health institutions is not directly tied to the outcomes in the current pandemic; however, it is plausible that having such codes in place makes responding to public health crises now and in the future less reactionary and more proactive in meeting community needs. These tribal institutions advance the public health outcomes that we all want to see in our communities.
• Hiraldo, D., James, K., & Carroll, S. R. (2021). Case Report: Indigenous Sovereignty in a Pandemic: Tribal Codes in the United States as Preparedness. Frontiers in sociology, 6, 617995.
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  Indigenous Peoples globally and in the United States have combatted and continue to face disease, genocide, and erasure, often the systemic result of settler colonial policies that seek to eradicate Indigenous communities. Many Native nations in the United States have asserted their inherent sovereign authority to protect their citizens by passing tribal public health and emergency codes to support their public health infrastructures. While the current COVID-19 pandemic affects everyone, marginalized and Indigenous communities in the United States experience disproportionate burdens of COVID-19 morbidity and mortality as well as socioeconomic and environmental impacts. In this brief research report, we examine 41 publicly available tribal public health and emergency preparedness codes to gain a better understanding of the institutional public health capacity that exists during this time. Of the codes collected, only nine mention any data sharing provisions with local, state, and federal officials while 21 reference communicable diseases. The existence of these public health institutions is not directly tied to the outcomes in the current pandemic; however, it is plausible that having such codes in place makes responding to public health crises now and in the future less reactionary and more proactive in meeting community needs. These tribal institutions advance the public health outcomes that we all want to see in our communities.
• Hiraldo, D., James, K., & Carroll, S. R. (2021). Indigenous Sovereignty in a Pandemic: Tribal Codes in the United State as Preparedness. Frontiers in Sociology, 6.
• Jones, K. M., Cook-Deegan, R., Rotimi, C. N., Callier, S. L., Bentley, A. R., Stevens, H., Phillips, K. A., Jansen, J. P., Weyant, C. F., Roberts, D. E., Zielinski, D., Erlich, Y., Garrison, N. A., Carroll, S. R., Ossorio, P. N., Moreau, Y., & Wang, M. (2021). Complicated legacies: The human genome at 20. Science (New York, N.Y.), 371(6529), 564-569.
• Jones, K. M., Cook-Deegan, R., Rotimi, C. N., Callier, S. L., Bentley, A. R., Stevens, H., Phillips, K. A., Jansen, J. P., Weyant, C. F., Roberts, D. E., Zielinski, D., Erlich, Y., Garrison, N. A., Carroll, S. R., Ossorio, P. N., Moreau, Y., & Wang, M. (2021). Complicated legacies: The human genome at 20. Science (New York, N.Y.), 371(Issue 6529). doi:10.1126/science.abg5266
• Peck, D. E., Owen, G., Greene, C., Garba, I., Ferguson, D. B., Carroll, S. R., Bentley, A., Meadow, A., & Wilmer, H. (2021). An Expanded Set of Ethical Principles for Transdisciplinary Social-Ecological Research. Ecology and Society, 68, 453-467. doi:https://doi.org/10.1007/s00267-021-01508-4
• Richards, J., Chambers, R. S., Begay, J. L., Jackson, K., Tingey, L., Patel, H., Carvajal, S., Carroll, S. R., Teufel-Shone, N., & Barlow, A. (2021). Diné (Navajo) female perspectives on mother-daughter communication and cultural assets around the transition to womanhood: a cross-sectional survey. BMC women's health, 21(1), 341.
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  The inclusion of protective factors ("assets") are increasingly supported in developing culturally grounded interventions for American Indian (AI) populations. This study sought to explore AI women's cultural assets, perspectives, and teachings to inform the development of a culturally grounded, intergenerational intervention to prevent substance abuse and teenage pregnancy among AI females.
• Richards, J., Chambers, R. S., Begay, J. L., Jackson, K., Tingey, L., Patel, H., Carvajal, S., Carroll, S. R., Teufel-Shone, N., & Barlow, A. (2021). Diné (Navajo) female perspectives on mother–daughter communication and cultural assets around the transition to womanhood: a cross-sectional survey. BMC Women's Health, 21(Issue 1). doi:10.1186/s12905-021-01473-4
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  Background: The inclusion of protective factors (“assets”) are increasingly supported in developing culturally grounded interventions for American Indian (AI) populations. This study sought to explore AI women’s cultural assets, perspectives, and teachings to inform the development of a culturally grounded, intergenerational intervention to prevent substance abuse and teenage pregnancy among AI females. Methods: Adult self-identified AI women (N = 201) who reside on the Navajo Nation completed a cross-sectional survey between May and October 2018. The 21-question survey explored health communication around the transition to womanhood, cultural assets, perceptions of mother–daughter reproductive health communication, and intervention health topics. Univariate descriptive analyses, chi squared, and fisher’s exact tests were conducted. Results: Respondents ranged in age from 18 to 82 years, with a mean age of 44 ± 15.5 years. Women self-identified as mothers (95; 48%), aunts (59; 30%), older sisters (55; 28%), grandmothers (37; 19%), and/or all of the aforementioned (50; 25%). 66% (N = 95) of women admired their mother/grandmother most during puberty; 29% (N = 58) of women were 10–11 years old when someone first spoke to them about menarche; and 86% (N=172) felt their culture was a source of strength. 70% (N = 139) would have liked to learn more about reproductive health when they were a teenager; 67% (N = 134) felt Diné mothers are able to provide reproductive health education; 51% (N = 101) reported having a rite of passage event, with younger women desiring an event significantly more than older women. Responses also indicate a disruption of cultural practices due to government assimilation policies, as well as the support of male relatives during puberty. Conclusions: Results informed intervention content and delivery, including target age group, expanded caregiver eligibility criteria, lesson delivery structure and format, and protective cultural teachings. Other implications include the development of a complementary fatherhood and/or family-based intervention to prevent Native girls’ substance use and teen pregnancy.
• Rowe, R. K., Carroll, S. R., Healy, C., Rodriguez-Lonebear, D., & Walker, J. D. (2021). The SEEDS of Indigenous population health data linkage. International journal of population data science, 6(1), 1417.
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  Globally, the ways that Indigenous data are collected, used, stored, shared, and analyzed are advancing through Indigenous data governance movements. However, these discussions do not always include the increasingly sensitive nature of linking Indigenous population health (IPH) data. During the International Population Data Linkage Network Conference in September of 2018, Indigenous people from three countries (Canada, New Zealand, and the United States) gathered and set the tone for discussions around Indigenous-driven IPH data linkage.
• Rowe, R. K., Carroll, S. R., Healy, C., Rodriguez-Lonebear, D., & Walker, J. D. (2021). The SEEDS of indigenous population health data linkage. International Journal of Population Data Science, 6(Issue 1). doi:10.23889/ijpds.v6i1.1417
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  Introduction Globally, the ways that Indigenous data are collected, used, stored, shared, and analyzed are advancing through Indigenous data governance movements. However, these discussions do not always include the increasingly sensitive nature of linking Indigenous population health (IPH) data. During the International Population Data Linkage Network Conference in September of 2018, Indigenous people from three countries (Canada, New Zealand, and the United States) gathered and set the tone for discussions around Indigenous-driven IPH data linkage. Objectives Centering IPH data linkage and research priorities at the conference led to budding discussions from diverse Indigenous populations to share and build on current IPH data linkage themes. This paper provides a braided summary of those discussions which resulted in the SEEDS principles for use when linking IPH data. Methods During the Conference, two sessions and a keynote were Indigenous-led and hosted by international collaborators that focused on regional perspectives on IPH data linkage. A retrospective document analysis of notes, discussions, and artistic contributions gathered from the conference resulted in a summary of shared common approaches to the linkage of IPH data. Results The SEEDS Principles emerge as collective report that outlines a living and expanding set of guiding principles that: 1) prioritizes Indigenous Peoples' right to Self-determination; 2) makes space for Indigenous Peoples to Exercise sovereignty; 3) adheres to Ethical protocols; 4) acknowledges and respects Data stewardship and governance, and; 5) works to Support reconciliation between Indigenous nations and settler states. Conclusion Each of the elements of SEEDS need to be enacted together to create a positive data linkage environment. When implemented together, the SEEDS Principles can lead to more meaningful research and improved Indigenous data governance. The mindful implementation of SEEDS could lead to better measurements of health progress through linkages that are critical to enhancing health care policy and improving health and wellness outcomes for Indigenous nations. 2021
• Wilmer, H., Meadow, A. M., Brymer, A. B., Carroll, S. R., Ferguson, D. B., Garba, I., Greene, C., Owen, G., & Peck, D. E. (2021). Expanded Ethical Principles for Research Partnership and Transdisciplinary Natural Resource Management Science. Environmental Management, 68(Issue 4). doi:10.1007/s00267-021-01508-4
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  Natural resource researchers have long recognized the value of working closely with the managers and communities who depend on, steward, and impact ecosystems. These partnerships take various forms, including co-production and transdisciplinary research approaches, which integrate multiple knowledges in the design and implementation of research objectives, questions, methods, and desired outputs or outcomes. These collaborations raise important methodological and ethical challenges, because partnering with non-scientists can have real-world risks for people and ecosystems. The social sciences and biomedical research studies offer a suite of conceptual tools that enhance the quality, ethical outcomes, and effectiveness of research partnerships. For example, the ethical guidelines and regulations for human subjects research, following the Belmont Principles, help prevent harm and promote respectful treatment of research participants. However, science–management partnerships require an expanded set of ethical concepts to better capture the challenges of working with individuals, communities, organizations, and their associated ecosystems, as partners, rather than research subjects. We draw from our experiences in collaborative teams, and build upon the existing work of natural resources, environmental health, conservation and ecology, social science, and humanities scholars, to develop an expanded framework for ethical research partnership. This includes four principles: (1) appropriate representation, (2) self-determination, (3) reciprocity, and (4) deference, and two cross-cutting themes: (1) applications to humans and non-human actors, and (2) acquiring appropriate research skills. This framework is meant to stimulate important conversations about expanding ethics training and skills for researchers in all career-stages to improve partnerships and transdisciplinary natural resources research.
• Wilmer, H., Meadow, A. M., Brymer, A. B., Carroll, S. R., Ferguson, D. B., Garba, I., Greene, C., Owen, G., & Peck, D. E. (2021). Expanded Ethical Principles for Research Partnership and Transdisciplinary Natural Resource Management Science. Environmental management, 68(4), 453-467.
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  Natural resource researchers have long recognized the value of working closely with the managers and communities who depend on, steward, and impact ecosystems. These partnerships take various forms, including co-production and transdisciplinary research approaches, which integrate multiple knowledges in the design and implementation of research objectives, questions, methods, and desired outputs or outcomes. These collaborations raise important methodological and ethical challenges, because partnering with non-scientists can have real-world risks for people and ecosystems. The social sciences and biomedical research studies offer a suite of conceptual tools that enhance the quality, ethical outcomes, and effectiveness of research partnerships. For example, the ethical guidelines and regulations for human subjects research, following the Belmont Principles, help prevent harm and promote respectful treatment of research participants. However, science-management partnerships require an expanded set of ethical concepts to better capture the challenges of working with individuals, communities, organizations, and their associated ecosystems, as partners, rather than research subjects. We draw from our experiences in collaborative teams, and build upon the existing work of natural resources, environmental health, conservation and ecology, social science, and humanities scholars, to develop an expanded framework for ethical research partnership. This includes four principles: (1) appropriate representation, (2) self-determination, (3) reciprocity, and (4) deference, and two cross-cutting themes: (1) applications to humans and non-human actors, and (2) acquiring appropriate research skills. This framework is meant to stimulate important conversations about expanding ethics training and skills for researchers in all career-stages to improve partnerships and transdisciplinary natural resources research.
• Wilmer, H., Meadow, A., Bentley, A., Carroll, S. R., Ferguson, D. B., Garba, I., Greene, C., Owen, G., & Peck, D. E. (2021). Expanded Ethical Principles for Research Partnership and Transdisciplinary Natural Resource Management Science. Environmental Management. doi:Expanded Ethical Principles for Research Partnership and Transdisciplinary Natural Resource Management Science
• Akee, R., Carroll, S. R., & Ford, C. (2020). Special Issue on COVID-19 and Indigenous Peoples: COVID-19 and Indigenous Peoples: Tools to Promote Equity and Best Practices. American Indian Culture and Research Journal, 44(3).
• Akee, R., Carroll, S. R., & Ford, C. (2020). Special Issue on COVID-19 and Indigenous Peoples: Impact of and Response to the Pandemic. American Indian Culture and Research Journal, 44(2).
• Akee, R., Carroll, S., & Ford, C. (2020). Tools to Promote Equity and Best Practices. American Indian Culture and Research Journal, 44(3). doi:10.17953/aicrj.44.3.akee_carroll_ford
• Austin, C. C., Bernier, A., Bezuidenhout, L., Bicarregui, J., Biro, T., Cambon-Thomsen, A., Carroll, S. R., Cournia, Z., Dabrowski, P. W., Diallo, G., Duflot, T., Garcia, L., Gesing, S., Gonzalez-Beltran, A., Gururaj, A., Harrower, N., Lin, D., Medeiros, C., Méndez, E., , Meyers, N., et al. (2020). Fostering global data sharing: Highlighting the recommendations of the Research Data Alliance COVID-19 working group. Wellcome Open Research, 5(Issue). doi:10.12688/wellcomeopenres.16378.1
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  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.
• Austin, C. C., Bernier, A., Bezuidenhout, L., Bicarregui, J., Biro, T., Cambon-Thomsen, A., Carroll, S. R., Cournia, Z., Dabrowski, P. W., Diallo, G., Duflot, T., Garcia, L., Gesing, S., Gonzalez-Beltran, A., Gururaj, A., Harrower, N., Lin, D., Medeiros, C., Méndez, E., , Meyers, N., et al. (2020). Fostering global data sharing: highlighting the recommendations of the Research Data Alliance COVID-19 working group. Wellcome open research, 5, 267.
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  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.
• Carroll, S. R., Chung, P., Cormack, D., Hudson, M., Kukutai, T., Rowe, R., Sara, R., Suina, M., & Walter, M. (2020). Data sharing respecting Indigenous data sovereignty. Research Data Alliance COVID-19 Working Group Recommendations and guidelines on data sharing. doi:https://doi.org/10.15497/rda00052
• Carroll, S. R., Garba, I., Figueroa-Rodriguez, O. L., Holbrook, J., Lovett, R., Materrechera, S., Parsons, M., Raseroka, K., Rodriguez-Lonebear, D., Rowe, R. K., Sara, R., Walker, J. D., Anderson, J., & Hudson, M. (2020). CARE Principles for Indigenous Data Governance. Data Science Journal, 19(43), 1–12. doi:https://doi.org/10.5334/dsj-2020-043
• Carroll, S. R., Garba, I., Figueroa-Rodríguez, O. L., Holbrook, J., Lovett, R., Materechera, S., Parsons, M., Raseroka, K., Rodriguez-Lonebear, D., Rowe, R., Sara, R., Walker, J. D., Anderson, J., & Hudson, M. (2020). The CARE principles for indigenous data governance. Data Science Journal, 19(Issue 1). doi:10.5334/dsj-2020-043
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  Concerns about secondary use of data and limited opportunities for benefit-sharing have focused attention on the tension that Indigenous communities feel between (1) protecting Indigenous rights and interests in Indigenous data (including traditional knowledges) and (2) supporting open data, machine learning, broad data sharing, and big data initiatives. The International Indigenous Data Sovereignty Interest Group (within the Research Data Alliance) is a network of nation-state based Indigenous data sovereignty networks and individuals that developed the ‘CARE Principles for Indigenous Data Governance’ (Collective Benefit, Authority to Control, Responsibility, and Ethics) in consultation with Indigenous Peoples, scholars, non-profit organizations, and governments. The CARE Principles are people- and purpose-oriented, reflecting the crucial role of data in advancing innovation, governance, and self-determination among Indigenous Peoples. The Principles complement the existing data-centric approach represented in the ‘FAIR Guiding Principles for scientific data management and stewardship’ (Findable, Accessible, Interoperable, Reusable). The CARE Principles build upon earlier work by the Te Mana Raraunga Maori Data Sovereignty Network, US Indigenous Data Sovereignty Network, Maiam nayri Wingara Aboriginal and Torres Strait Islander Data Sovereignty Collective, and numerous Indigenous Peoples, nations, and communities. The goal is that stewards and other users of Indigenous data will ‘Be FAIR and CARE.' In this first formal publication of the CARE Principles, we articulate their rationale, describe their relation to the FAIR Principles, and present examples of their application.
• Carroll, S. R., Rodriguez-Lonebear, D., Akee, R., Lucchesi, A., & Richards, J. R. (2020). Indigenous Data in the COVID-10 Pandemic: Straddling Erasure, Terrorism, and Sovereignty. Items: Insights from the Social Sciences, Social Science Research Council.
• Garrison, N. A., Carroll, S. R., & Hudson, M. (2020). Entwined Processes: Rescripting Consent and Strengthening Governance in Genomics Research with Indigenous Communities. Journal of Law, Medicine and Ethics, 48(Issue 1). doi:10.1177/1073110520917020
• Garrison, N. A., Carroll, S. R., & Hudson, M. (2020). Entwined Processes: Rescripting Consent and Strengthening Governance in Genomics Research with Indigenous Communities. The Journal of law, medicine & ethics : a journal of the American Society of Law, Medicine & Ethics, 48(1), 218-220.
• Hudson, M., Garrison, N. A., Sterling, R., Caron, N. R., Fox, K., Yracheta, J., Anderson, J., Wilcox, P., Arbour, L., Brown, A., Taualii, M., Kukutai, T., Haring, R., Te Aika, B., Baynam, G. S., Dearden, P. K., Chagné, D., Malhi, R. S., Garba, I., , Tiffin, N., et al. (2020). Rights, interests and expectations: Indigenous perspectives on unrestricted access to genomic data. Nature reviews. Genetics, 21(6), 377-384.
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  Addressing Indigenous rights and interests in genetic resources has become increasingly challenging in an open science environment that promotes unrestricted access to genomic data. Although Indigenous experiences with genetic research have been shaped by a series of negative interactions, there is increasing recognition that equitable benefits can only be realized through greater participation of Indigenous communities. Issues of trust, accountability and equity underpin Indigenous critiques of genetic research and the sharing of genomic data. This Perspectives article highlights identified issues for Indigenous communities around the sharing of genomic data and suggests principles and actions that genomic researchers can adopt to recognize community rights and interests in data.
• Johnson, N., Jäger, M. B., Jennings, L., Juan, A., Carroll, S. R., & Ferguson, D. B. (2020). Indigenous Foods Knowledges Network: Facilitating Exchange between Arctic and Southwest Indigenous Communities on Food and Knowledge Sovereignty. Witness Community Highlights. Fairbanks: ARCUS: Arctic Research Consortium of the United States.
• Rodriguez-Lonebear, D., Barceló, N. E., Akee, R., & Carroll, S. R. (2020). American Indian Reservations and COVID-19: Correlates of Early Infection Rates in the Pandemic. Journal of public health management and practice : JPHMP, 26(4), 371-377.
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  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.
• Rodriguez-Lonebear, D., Barceló, N. E., Akee, R., & Carroll, S. R. (2020). American indian reservations and COVID-19: Correlates of early infection rates in the pandemic. Journal of Public Health Management and Practice, 26(Issue 4). doi:10.1097/phh.0000000000001206
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  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 residentsmay 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.
• Carroll, S. R., Rodriguez-Lonebear, D., & Martinez, A. (2019). Indigenous Data Governance: Strategies from United States Native Nations. Data science journal, 18.
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  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 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.
• Carroll, S. R., Rodriguez-Lonebear, D., & Martinez, A. (2019). Indigenous data governance: Strategies from united states native nations. Data Science Journal, 18(Issue 1). doi:10.5334/dsj-2019-031
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  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.
• Garrison, N. A., Barton, K. S., Porter, K. M., Mai, T., Burke, W., & Carroll, S. R. (2019). Access and Management: Indigenous Perspectives on Genomic Data Sharing. Ethnicity & disease, 29(Suppl 3), 659-668.
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  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 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 in AI/AN/NH communities. We report findings related to perspectives on genetic research, data sharing, and envisioning stronger oversight and management of data. In particular, participants voiced concerns about different models of data sharing, infrastructure and logistics for housing data, and who should have authority to grant access to data. The results will ultimately guide policy-making and the creation of guidelines and new strategies for tribes to drive the research agenda and promote ethically and culturally appropriate research.
• Garrison, N. A., Barton, K. S., Porter, K. M., Mai, T., Burke, W., & Carroll, S. R. (2019). Access and management: Indigenous perspectives on genomic data sharing. Ethnicity and Disease, 29(Issue). doi:10.18865/ed.29.s3.659
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  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 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 in AI/AN/NH communities. We report findings related to perspectives on genetic research, data sharing, and envisioning stronger oversight and management of data. In particular, participants voiced concerns about different models of data sharing, infrastructure and logistics for housing data, and who should have authority to grant access to data. The results will ultimately guide policy-making and the creation of guidelines and new strategies for tribes to drive the research agenda and promote ethically and culturally appropriate research.
• Garrison, N., Hudson, M., Ballentine, L., Garba, I., Martinez, A., Taualii, M., Arbour, L., Caron, N. R., & Rainie, S. C. (2019). Genomic Research through an Indigenous Lens: Understanding the Expectations. Annual Review of Genomics and Human Genetics, 20.
• Jäger, M. B., Behe, C., Ferguson, D. B., Huntington, O., Cora, A., Johnson, M. K., Johnson, N., Juan, A., Larson, S., Pulsifer, P., Reader, T., Strawhacker, C., Walker, A., Whiting, D., Wilson, J., Yazzie, J., & Rainie, S. C. (2019). Building an Indigenous Foods Knowledges Network Through Relational Accountability. Journal of Agriculture, Food Systems, and Community Development.
• Jäger, M. B., Ferguson, D. B., Huntington, O., Johnson, M. K., Johnson, N., Juan, A., Larson, S., Pulsifer, P., Reader, T., Strawhacker, C., Walker, A., Whiting, D., Wilson, J., Yazzie, J., & Carroll, S. R. (2019). Building an Indigenous foods knowledges network through relational accountability. Journal of Agriculture, Food Systems, and Community Development, 9(Issue). doi:10.5304/jafscd.2019.09b.005
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  In recent decades, there has been a movement toward rectifying injustices and developing collaborations between Indigenous communities and mainstream researchers to address environmental challenges that are of concern to Indigenous Peo- ples. This movement, primarily driven by Indigenous community leaders and scholars, emphasizes community-driven research that addresses Indigenous People’s interests, foregrounds Indigenous Knowledge systems, and both respects and asserts Indigenous sovereignty. This article describes a nascent model in the movement—the Indigenous Foods Knowledges Network (IFKN)—designed to connect Indigenous communities and scholars across the Arctic and the U.S. Southwest. IFKN’s goal is to foster a network of Indigenous leaders, citizens, and scholars who are focused on research and community capacity related to food sovereignty and resilience. IFKN members collectively work to promote and carry out research that (1) utilizes Indigenous research processes, (2) embraces and respects Indigenous Knowledge systems, and (3) supports Indigenous communities (IFKN, 2018). The authors discuss relational accountability and centering of story, which form the foundation for the methodological approaches and work of IFKN.
• Rainie, S. C., Rodriguez-Lonebear, D., & Martinez, A. (2019). Indigenous Data Governance: Strategies from United States Native Nations. Data Science Journal.
• Carroll, S. R., Carroll, S. R., Schultz, J. L., Schultz, J. L., Briggs, E., Briggs, E., Riggs, P., Riggs, P., Palmanteer-Holder, N. L., & Palmanteer-Holder, N. L. (2017). Data as a Strategic Resource: Self-determination, Governance, and the Data Challenge for Indigenous Nations in the United States. International Indigenous Policy Journal, 5(4), 1-2. doi:10.18584/iipj.2014.5.4.1
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  Data about Indigenous populations in the United States are inconsistent and irrelevant. Federal and state governments and researchers direct most collection, analysis, and use of data about U.S. Indigenous populations. Indigenous Peoples’ justified mistrust further complicates the collection and use of these data. Nonetheless, tribal leaders and communities depend on these data to inform decision making. Reliance on data that do not reflect tribal needs, priorities, and self-conceptions threatens tribal self-determination. Tribal data sovereignty through governance of data on Indigenous populations is long overdue. This article provides two case studies of the Ysleta del Sur Pueblo and Cheyenne River Sioux Tribe and their demographic and socioeconomic data initiatives to create locally and culturally relevant data for decision making.
• Rainie, S. C., & Stull, G. (2017). Reframing Return on Investments for Tribal Colleges and Universities: Aligning Analyses with Tribal Priorities and Educational Missions. ETS Research Report Series, 18-26. doi:10.1002/ets2.12187
• Rainie, S. C., Schultz, J. L., Briggs, E., Riggs, P., & Palmanteer-Holder, N. L. (2017). Data as Strategic Resource: Self-Determination and the Data Challenge for United States Indigenous Nations. The International Indigenous Policy Journal.
• Rainie, S. C., Jorgensen, M. R., Cornell, S. E., & Arsenault, J. (2015). The Changing Landscape of Health Care Provision to American Indian Nations. American Indian Culture and Research Journal, 9(1), 1-23. doi:http://dx.doi.org/10.17953/aicr.39.1.j1u030g668113403
• Schultz, J. L., Starks, R. R., & Rainie, S. C. (2015). Residence, Community Engagement, and Citizenship: How Do Non-Resident Tribal Citizens Connect with Native Nations.
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  Schultz, Jennifer Lee, Stephanie Carroll Rainie, & Rachel Rose Starks. (2015). Residence, community engagement, and citizenship: How do non-resident tribal citizens connect with Native nations. Tucson, AZ: Native Nations Institute. Retrieved from http://nni.arizona.edu/pdfs/offrezsummaryreport.pdf
• De La Rosa, J. S., & Rainie, S. C. (2014). The Strategic Power of Data: A Key Aspect of Sovereignty. The International Indigenous Policy Journal , 5(1).
• Cornell, S. E., Jorgensen, M. R., Rainie, S. C., Record, I., Seelau, R., & Starks, R. R. (2008). Per capita distributions of American Indian tribal revenues: A preliminary discussion of policy considerations. Joint Occasional Papers on Native Affairs (JOPNA).
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  Cornell, Stephen, Miriam Jorgensen, Stephanie Carroll Rainie, Ian Record, Ryan Seelau, & Rachel Rose Starks. (2008). Per capita distributions of American Indian tribal revenues: A preliminary discussion of policy considerations. Joint Occasional Papers on Native Affairs (JOPNA). Tucson, AZ and Cambridge, MA: Udall Center for Studies in Public Policy and Harvard Project on American Indian Economic Development.

Proceedings Publications

• Stull, G., & Rainie, S. C. (2016, Spring). Reframing Return on Investments for Tribal Colleges and Universities: Aligning Analyses with Tribal Priorities and Educational Missions. In National MSI Return on Investment Convening, Princeton: ETS and PENN Center for Minority Serving Institutions.

Presentations

• Chief, K., Lewis, J., Carroll, S. R., Shuey, C., Chee, R., Gray, B., Tulley, N., Beene, D., Akee, R., Ingram, J., & Hoover, J. H. (2023, March). Assessing COVID-19 risk factors on the Navajo Nation - Preliminary Results. 2023 American Association of Geographers. Denver, CO: American Association of Geographers.
• Carroll, S. R. (2022). Operationalizing the CARE Principles for Indigenous Data Governance in Environmental Sciences. Data Decision to Action: Public Data Infrastructure for Scientific Discovery at the AAAS Annual Meeting.
• Carroll, S. R., Kukutai, T., & Walter, M. (2022). GIDA and the CARE Principles. UNESCO International Decade of Indigenous Languages Introductory Gathering.
• Carroll, S. R. (2021). Be FAIR and CARE: Data Sharing in the context of COVID-19 and Climate Change. Equity in Open Scholarship panel at the 2nd UN Global Open Science Conference.
• Carroll, S. R. (2021). CARE Principles for Indigenous Data Governance. Panel “Leveraging Diverse Knowledge Systems for Inclusive and Sustainable Growth” at the 17th Asia Pacific Economic Cooperation (APEC) Policy Partnerships on Science, Technology and Innovation (PPSTI) Meeting.
• Carroll, S. R. (2021). Center Director Panelist for the “Exposure Pathways & Environmental Health Disparities” webinar. NIH-EPA Environmental Health Disparities Research Centers of Excellence Program five-part EHD Webinar Series hosted by the National Institute of Environmental Health Sciences, the National Institute on Minority Health and Health Disparities and the U.S. Environmental Protection Agency.
• Carroll, S. R. (2021). Governance and Sovereignty for Indigenous Data Futures. NB3 Notah Begay Foundation Grantees Meeting.
• Carroll, S. R. (2021). Indigenous Data Sovereignty: Considerations for Data Governance and Oversight. CEIGR/ Center for the Ethics of Indigenous Genomic Research Convening on Indigenous Research Ethics.
• Carroll, S. R. (2021). Indigenous Peoples and Research: Learning from Tribal Needs. Native American Heritage Month, University of Arizona Health Sciences.
• Carroll, S. R. (2021). Indigenous Peoples and Research: Learning from Tribal Needs. New York University ENRICH Speaker Series.
• Carroll, S. R. (2021). Indigenous Peoples’ Data and Open Science: Resolving Tension through Indigenous Data Sovereignty. Biology Seminar Series hosted by Boise State University and the NIH Clinical and Translational Research-Infrastructure Network (CTR-IN).
• Carroll, S. R. (2021). Indigenous Peoples’ Data and Open Science: Resolving Tension through Indigenous Data Sovereignty. Environmental Data Science Inclusion Network.
• Carroll, S. R. (2021). Operationalizing the CARE Principles for Indigenous Data Governance in Environmental Sciences. Centering Justice in Indigenous Data Sovereignty Panel for the Centering Justice in the Convergence of Sciences, Communities, and Actions 9th Annual Rising Voices Workshop.
• Carroll, S. R. (2021). Operationalizing the CARE Principles for Indigenous Data Governance in Environmental Sciences. Opening Plenary at the Earth Science Information Partners (ESIP) Winter Meeting.
• Carroll, S. R. (2021). Responsibilities for the Stewardship of Indigenous Data in Open Science. Indigenous Voices Series hosted by the International Society for Computational Biology.
• Carroll, S. R. (2021). Sovereignty and Governance for Indigenous Data Futures. Alaska Indigenous Research Program.
• Carroll, S. R. (2021). Sovereignty and Governance for Indigenous Data Futures. Alaska Native Health Research Conference.
• Carroll, S. R. (2021). Sovereignty and Governance for Indigenous Data Futures. Border Latino and American Indian Summer Exposure to Research (BLAISER), University of Arizona College of Medicine.
• Carroll, S. R. (2021). Sovereignty and Governance for Indigenous Data Futures. Conversation with Cantwell, University of Arizona Research, Innovation and Impact.
• Carroll, S. R. (2021). Sovereignty and Governance for Indigenous Data Futures. Open Repositories Conference.
• Carroll, S. R. (2021). Sovereignty and Governance for Indigenous Data Futures. Panel “Genomics and Data Sovereignty: Policy and Deliberative Approaches for Engaging Indigenous Communities” at the ELSI Friday Forum.
• Carroll, S. R. (2021). Sovereignty and Governance for Indigenous Data Futures. Session A1: International data management policies and practices panel for Parallel Theme A: International Research Infrastructures, the way forward at the 5th International Conference on Research Infrastructures (ICRI).
• Carroll, S. R. (2021). The CARE Principles for Indigenous Data Governance. “Data Sovereignty and Developing Standards for Indigenous Data Provenance” Workshop as part of the Developing Standards for Indigenous Peoples’ Data Workshop SeriesTikanga in Technology, ENRICH, the Collaboratory for Indigenous Data Governance and The Maintainers.
• Carroll, S. R. (2021). The IEEE Indigenous Data Working Group for the Recommendation for the Provenance of Indigenous Peoples Data. Workshop 3 for the Developing Standards for Indigenous Peoples’ Data Workshop SeriesTikanga in Technology, ENRICH, the Collaboratory for Indigenous Data Governance and The Maintainers.
• Carroll, S. R. (2021, February). The CARE Principles for Indigenous Data Governance. Bringing Together Indigenous & Western Ways of Coastal & Ocean Observing SeriesCanadian Integrated Ocean Observing System (CIOOS) Atlantic.
• Carroll, S. R. (2021, February). The CARE Principles for Indigenous Data Governance. Operationalising the CARE Principles for Indigenous Data Governance WebinarOCLC-National and State Libraries Australia (NSLA).
• Carroll, S. R. (2021, January). The CARE Principles for Indigenous Data Governance. Online Consultation for Indigenous Peoples on the UNESCO Recommendation on Open Science.
• Carroll, S. R., & Anderson, T. (2021). Transforming Big Data for Indigenous Futures: The CARE Principles for Indigenous Data Governance. CGIAR Platform for Big Data in Agriculture Ontologies Communities of Practice webinar.
• Carroll, S. R., & Cordova, F. M. (2021). Connecting with Data and Community Through an Indigenous Lens. Molecular Epidemiology & the Environment SIG” for the ASPO American Society of Preventive Oncology 45TH Annual Meeting: Health Equity, Culture, & Cancer.
• Carroll, S. R., & Kukutai, T. (2021). Sovereignty and Governance for Indigenous Data Futures. National Science Foundation and Education New Zealand Multiplier Planning and Virtual Information Exchange Session..
• Carroll, S. R., & Martinez, A. (2021). Indigenous Data Sovereignty: An Overview and Potential Application of Data Governance for CRITFC. Columbia River Inter-Tribal Fish Commission (CRITFC) Inter-Tribal Monitoring Data Project Annual Meeting.
• Carroll, S. R., & Ore, C. (2021). Indigenous Data Sovereignty and Community Wellbeing. Civic Vitality: Civic Engagement, Social Connection, and Trust in Government listening session for the Well-being and Equity (WE) in the World and Well Being in the Nation (WIN) Measures and Update Series.
• Carroll, S. R., Akee, R., & Rodriguez-Lonebear, D. (2021). Indigenous Data Sovereignty: Role of Tribal Nations in Federal Framework for Indigenous Data. Self-Governance Communication and Education Tribal Consortium.
• Chief, K., Carroll, S. R., & Ingram, J. (2021). Assessing Navajo COVID-19 Risks and Increasing Indigenous Resilience. 2021 Bi-Annual Navajo Research Conference.
• Jager, M. E., Johnson, N., Erickson, K., Carroll, S. R., Ferguson, D. B., & Jennings, L. L. (2021). Co-producing Knowledge in a Time of Rapid Change: Lessons from the Indigenous Foods Knowledges Network. GC52C session Social and Ecological Consequences of Recent Changes in the Arctic and Subarctic Region I Oral session at the American Geophysical Union Conference.
• Jennings, L. L., Martinez, A., & Carroll, S. R. (2021). The CARE Principles for Indigenous Data Governance,. U34A Open Science for Equitable Climate Action session at the American Geophysical Union Conference.
• Anderson, J., & Carroll, S. R. (2020, February). The CARE Principles and Biocultural (BC) Labels. NYU Public Interest Technology Alliance Launch. New York, NY: New York University.
• Beamer, P., Chief, K., & Carroll, S. R. (2020, November). Tó’Łítso, the water is yellow: Investigating short-term exposure and risk perception of Navajo communities to the Gold King Mine Toxic Spill: Project Update. Annual Grantees Meeting of the NIH/EPA Centers of Excellence on Environmental Health Disparities Research.
• Carroll, S. R. (2020). The Significance of Indigenous Data Sovereignt. Border Latino and American Indian Summer Exposure to Research (BLAISER), University of Arizona College of Medicine.
• Carroll, S. R. (2020, April). "The CARE Principles for Indigenous Data Governance” at the Joint Session of the International Indigenous Data Sovereignty Interest Group and the FAIR Data Maturity Model Working Group “Operationalising Be FAIR and CARE”. Research Data Alliance 15th Plenary.
• Carroll, S. R. (2020, April). The Significance of Indigenous Data Sovereignty for Climate Resilience. “Perspective on observing needs focused on Indigenous, private sector and science needs” Panel at the Arctic Observing Summit.
• Carroll, S. R. (2020, April). The Significance of Indigenous Data Sovereignty. Women in Data Science (WiDS) Tucson Virtual Conference, University of Arizona.
• Carroll, S. R. (2020, August). GIDA-RDA COVID-19 Guidelines for Data Sharing Respecting Indigenous Data Sovereignty. “Understanding the Impact of the RDA COVID-19 Recommendations and Guidelines on Data Sharing” webinar hosted by the United States Research Data Alliance.
• Carroll, S. R. (2020, August). Indigenous Data Sovereignty and the CARE Principles for Indigenous Data Governance. Indigenous Data Sovereignty: Activating Policy and Practice Webinar. Co-hosted by ORCID, the US Indigenous Data Sovereignty Network, and the Global Indigenous Data Alliance.
• Carroll, S. R. (2020, December). Eclipsing Equity, Indigenous Peoples Sovereignty, Data, and Research. National Academy of Medicine “Advancing Health Equity Science, Practice & Outcomes” Culture of Health Program Virtual Listening Workshop.
• Carroll, S. R. (2020, December). Indigenous Peoples’ Rights and Interests in Data. “2020 Reflections: Collaboration within Public Health and Environmental Justice” WebinarEnvironmental and Public Policy Section, Association for Conflict Resolution.
• Carroll, S. R. (2020, December). “The CARE Principles for Indigenous Data Governance,” at the “Indigenous Data Sovereignty” Main Session and Lightening Talks. GEO Indigenous Summit.
• Carroll, S. R. (2020, February). Enhancing Genomic Research in the US Through the Lens of Indigenous Data Sovereignty. Innovation Policy Colloquium,. New York, NY: New York University School of Law.
• Carroll, S. R. (2020, February). Responsibilities for the Stewardship of Indigenous Data in Open Science. Indigenous Voices SeriesInternational Society for Computational Biology.
• Carroll, S. R. (2020, July). Sovereignty and Governance for Indigenous Data Futures. American Indian and Alaska Native (AIAN) Data Sovereignty Webinar Series. Hosted by the AIAN-Clinical Translational Research Program (CTRP).
• Carroll, S. R. (2020, July). Sovereignty and Governance for Indigenous Data Futures. Health Sciences Summer Research Intensive, Dine College and the University of Arizona.
• Carroll, S. R. (2020, July). Sovereignty and Governance for Indigenous Data Futures. RII Achieving Racial Equity – Data Driven Solutions Meeting, University of Arizona.
• Carroll, S. R. (2020, June). "Indigenous Rights and Interests” on the Perspectives on Engaging Disproportionately Affected Communities Panel. The Role of Science Communication in Addressing the Disproportionate Effects of COVID-19 on Vulnerable Populations Open Session. Hosted by the National Academies of Science, Engineering and Medicine Standing Committee on Advancing Science Communication Research and Practice.
• Carroll, S. R. (2020, June). "The Significance of Indigenous Data Sovereignty and Governance” in the Digital Value, Data Rights, Extractivism & Indigenous Knowledge Panel. CODATA Center of Excellence in Data for Society at the University of Arizona (CEDS) MiniForum at the Extraction: Tracing the Veins virtual conference. Co-hosted by Massey University, New Zealand and Wageningen University and Research, The Netherlands.
• Carroll, S. R. (2020, June). The CARE Principles for Indigenous Data Governance. Indigenous Data Sovereignty: Tools for Transparency Virtual Workshop. Co-hosted by ORCID, DataCite, the US Indigenous Data Sovereignty Network, and the Global Indigenous Data Alliance.
• Carroll, S. R. (2020, June). The Significance of Indigenous Data Sovereignty and Governance for Hackathons. GEO Indigenous Hack4COVID-19.
• Carroll, S. R. (2020, March). The Significance of Indigenous Data Sovereignty and Governance. Keynote Plenary at the Arctic Observing Summit.
• Carroll, S. R. (2020, March). The Significance of Indigenous Data Sovereignty and Governance. “What if we design for plurality?” Panel at the IAM (Internet Age Media) Weekend “The Weirdness of Interdependency” Virtual Conference.
• Carroll, S. R. (2020, May). The CARE Principles for Indigenous Data Governance. Access to Indigenous Data: Integrating Community, Individual, and Analyst Interests Virtual Workshop. Co-hosted by ORCID, DataCite, the US Indigenous Data Sovereignty Network, and the Global Indigenous Data Alliance.
• Carroll, S. R. (2020, November). "Operationalizing the CARE Principles for Indigenous Data Governance in Research Data Environments" at the “Indigenous Data Sovereignty and Governance in the Americas” Plenary Session. Research Data Alliance Virtual 16th Plenary.
• Carroll, S. R. (2020, November). “GIDA-RDA COVID-19 Guidelines for Data Sharing Respecting Indigenous Data Sovereignty,” at the “RDA Adoption Opportunities and Highlights” Plenary Session. Research Data Alliance Virtual 16th Plenary.
• Carroll, S. R. (2020, November). “Indigenous Peoples’ Rights and Interests in Data,” at the “Indigenous Data Sovereignty” Paneel. Online Indigenous Mapping Workshop.
• Carroll, S. R. (2020, October). Indigenous Data Governance. Data and Research Priorities for Southwest Tribal Climate Resilience SummitCo-hosted by the Native Nations Institute, the Southwest Climate Adaptation Science Center, Climate Assessment for the Southwest, and the Indigenous Foods Knowledges Network with funding from the Inter Tribal Council of Arizona and the Bureau of Indian Affairs.
• Carroll, S. R. (2020, September). Operationalizing the CARE Principles for Indigenous Data Governance in Research Data Management. NNLM Network of the National Library of Medicine Research Data Management Webinar and Training (MLA CE) Series.
• Carroll, S. R. (2020, September). Operationalizing the CARE Principles for Indigenous Data Governance in Research. Genetic Genomics and Ethics for Native (GEN) Students Program at Oklahoma State University Indigenous Research Impact Series.
• Carroll, S. R., & Anderson, J. (2020, August). Operationalizing the CARE Principles for Indigenous Data Governance. OCLC Webinar.
• Carroll, S. R., & Hudson, M. (2020, October). CARE Principles and Open Data Post COVID. Consultation on the Post COVID-19 implications on collaborative governance of genomics research, innovation and genetic diversity workshopUN FAO, Secretariat of the International Treaty on Plant Genetic Resources, in partnership with CIRAD and the Center for Science, Technology and Environmental Policy Studies, Arizona State University.
• Carroll, S. R., Rodriguez-Lonebear, D., & Ellenwood, C. (2020, April). The Significance of Indigenous Data Sovereignty for Funders. International Funders for Indigenous Peoples, online webinar.
• Figueroa-Rodríguez, O., Hudson, M., & Carroll, S. R. (2020, July). CARE Principles for Indigenous Data Governance. RightsCon Online 2020 Conference.
• Garrison, N., Rodriquez-Lonebear, D., Hiratsuka, V., Hall, D., Carroll, S. R., & Garba, I. (2020, November). Tribal sovereignty and research ethics: a review of US Tribal legislation. 9th Biennial International Indigenous Research Conference. Auckland, New Zealand: Ngā Pae o te Māramatanga (NPM), Māori Centre of Research Excellence, University of Auckland.
• Neylong, C., Dillo, I., Ntoimo, L., Carroll, S. R., Parsons, M., & Garcia Castro, L. J. (2020, August). Present and Future of FAIR: Plenary 2 Panel C. FORCE11 Scholarly Communication Institute FSCI 2020 Plenary Series.
• Simons, N., Lujano, I., Carroll, S. R., & Wyborn, L. (2020, August). Present and Future of FAIR: Plenary 2 Panel. FORCE11 Scholarly Communication Institute FSCI Plenary Series.
• Carroll, S. R. (2019, April). The Significance of Indigenous Data Sovereignty. Indigenous Data Sovereignty Summit in Arizona. Phoenix, AZ.
• Carroll, S. R. (2019, July). The Significance of Indigenous Data Sovereignty”. Border Latino and American Indian Summer Exposure to Research (BLAISER). Tucson, AZ: University of Arizona College of Medicin.
• Carroll, S. R. (2019, May). Indigenous Data Sovereignty and Genomics Research. Indigenous Initiatives in Genome Research Workshop. New York City, NY: Nature Research Publications.
• Carroll, S. R. (2019, November). Indigenous in the Academy: Sovereignty, Responsibility, and Research. The Partnership for Native American Cancer Prevention “My Journey” Seminar Series, University of Arizona.
• Carroll, S. R., & Hudson, M. (2019, July). The CARE Principles for Indigenous Data Governance. International Law, The United Nations Declaration of the Rights of Indigenous Peoples and Indigenous Data Sovereignty Workshop. Oñati, Spain.
• Carroll, S. R., & Joseph, C. N. (2019, June). Implications of Indigenous Data Sovereignty for Public Health Tracking. Environmental Public Health Tracking in Tribal Lands. [Host: Arizona Department of Health Services and the Center for Disease Control].
• Carroll, S. R., Jager, M. B., & David-Chavez, D. (2019, May). The Significance of Indigenous Data Sovereignty and Governance. American Indian and Alaska Native Working Group Meeting. webinar: National Aeronautics and Space Administration.
• Cormack, D., Kukutai, T., Carroll, S. R., & Walter, M. (2019, September). Indigenous responses to datafication and data colonialism: Indigenous Data Sovereignty movements in Aotearoa New Zealand, Australia and the United States (A-318). 3rd Data Power Conference. Bremen, German.
• Jennings, L., Jäger, M. B., Johnson, N., & Carroll, S. R. (2019, December). The Indigenous Foods Knowledges Network: Building Indigenous Led Collaborations across Biomes. American Geophysical Union Fall Conference PA54A Growing Pains: Overcoming Obstacles and Working Together to Improve Research Collaboration in Science I Session. San Francisco, CA: American Geophysical Union Conference.
• Carroll, S. R. (2018, October). Indigenous data sovereignty: An Update from the Field. University of New Mexico Tribal Data Champions. Albuquerque, NM.
• Cormack, D., Kukutai, T., Rainie, S. C., & Walter, M. (2018, May). Indigenous Responses to Datafication: Indigenous Data Sovereignty Movements. Data Justice 2018: Exploring Social Justice in and Age of Datafication. Cardiff.
• Garcia, J., Echohawk, A., Rainie, S. C., Rodriguez-Lonebear, D., & Suina, M. (2018, June). The Governance of Indigenous Data: Generating a Framework and Principles. National Congress of American Indian Policy Research Center Pre-Conference Data Institute. Kansas City.
• Jennings, L., David-Chavez, D., & Rainie, S. C. (2018, October). Indigenous Data Sovereignty: How Scientists and Researchers Can Empower Indigenous Data Governance. American Indian Science and Engineering Society National Conference. Oklahoma City.
• Rainie, S. C. (2018, Fall). Indigneous Data Sovereignty & Open Data. International Open Data Conference. Buenos Aires.
• Rainie, S. C. (2018, Fall). Stewarding Indigenous Data: Resolving Tensions between Open Data and Indigenous Data Sove. University of Arizona Open Access Week: Should Research Data Always Be Open?. Tucson, AZ: University of Arizona Libraries.
• Rainie, S. C. (2018, November). Updates from the US Indigenous Data Sovereignty Network. “Indigenous Data Sovereignty in the Global South, Rural areas, and Developing Countries” International Indigenous Data Sovereignty Interest Group session at the Research Data Alliance Plenary part of International Data Week. Gaborone, Botswana.
• Rainie, S. C. (2018, Summer). Indigenous Data Sovereignty: How Scientists and Researcher Can Empower Data Governance. Earth Science Information Partners 2018 Summer Meeting. Tucson, AZ.
• Rainie, S. C. (2018, Summer). Reclaiming Indigenous Wellbeing: Health and Healthcare for Native Americans. Border Latino and American Indian Summer Exposure to Research (BLAISER), University of Arizona College of Medicine.
• Rainie, S. C., & Rodriguez-Lonebear, D. (2018, March). Indigenous Data Sovereignty: RDA Recommendations for Indigenous Data Governance. Research Data Alliance 11th Plenary. Berlin.
• Rainie, S. C., & Walter, M. (2018, November). An Introduction to Indigenous Data Sovereignty and its Implications for the Governance of Indigenous Data. “Indigenous Data Sovereignty: Science, Research, and the Governance of Indigenous Data” panel at the Scientific Data Conference part of International Data Week. Gaborone, Botswana.
• Rainie, S. C., & Zuniga Aponte, A. G. (2018, September). "Indigenous Data Sovereignty” presentation at the Indigenous Data Sovereignty Big Picture Session. International Open Data Conference. Buenos Aires.
• Rainie, S. C., Ferguson, D. B., & Martinez, A. (2018, December). Resilience, Sustainability, and Indigenous Communities: Knowledges in Dialogue for Environmental Research, Assessment, and Planning (Abstract ID 399127). PA53A: Native Science to Action: How Indigenous Perspectives Inform, Diversify, and Build Capacity in Environmental Science and Policy I session at the American Geophysical Union Conference. Washington DC.
• Rainie, S. C., Jennings, L., & Begay, R. (2018, April). Indigenous Data Sovereignty: How Scientists and Researchers Can Empower Indigenous Data Governance. American Indian Science and Engineering Society Region 3 Conference. Tucs.
• Rainie, S. C., Li, J., & Villatoro, D. (2018, Fall). "Indigenous Data Sovereignty" presentad at the Data + Indigenous Impact Session. International Open Data Conference 2018. Buenos Aires.
• Rainie, S. C., Strawhacker, C., Johnson, N., Pulsifer, P., Ferguson, D. B., Reader, T., Jäger, M. B., & Huntington, O. (2018, December). The Indigenous Foods Knowledges Network: Supporting Indigenous Scholars through Research and Academic Innovations (Abstract ID 451206). ED13A: From Either/or to Yes/and: Increasing Indigenous Participation in Science by Simultaneously Cultivating STEM and Cultural Identities II session at the American Geophysical Union Conference. Washington DC.
• Walker, J., Healy, B., Apsassin, T., Wadsworth, W., Jones, C., Reading, J., Lemchuk-Favel, L., Lovett, R., Cormack, D., Rainie, S. C., Rodriguez-Lonebear, D., & Rowe, R. (2018, September). Perspectives on Linkage Involving Indigenous Data Sovereignty. International Population Data Linkage Conference. Banff.
• Jorgensen, M. R., & Rainie, S. C. (2017, July). Data Initiatives at the University of Arizona and the Harvard Project. Data for Indian Economic Development Workshop. Tucson, AZ: Tribal-Interior Budget Council (TIBC), Department of Interior.
• Rainie, S. C. (2017, February). Center for Indigenous Environmental Health Research. Convening for Indigenous Australian Scholars, The University of Arizona. Tucson, AZ: Global Initiatives, University of Arizona.
• Rainie, S. C. (2017, February). Nation Building for Wellness: Tribal Data Sovereignty for Healthy Indigenous Communities. Community, Environment and Policy Department Meeting. Tucson, AZ: Mel and Enid Zuckerman College of Public Health, The University of Arizona.
• Rainie, S. C. (2017, October). Data Governance: Towards Indigenous Data Sovereignty.. Victoria Aboriginal Community Controlled Health Organization, Inc., Members Meeting. Lakes Entrance, VIC, Australia.
• Rainie, S. C., & Martinez, A. (2017, June). Indigenous Data Sovereignty: Opportunities for Tribal/Federal Collaboration. Society of American Indian Government Employees “Standing Together” conference. Scottsdale, AZ.
• Rainie, S. C., & Rodriguez-Lonebear, D. (2017, June). United States Indigenous Nation Data Governance: Toward Data Sovereignty. National Congress of American Indians Policy Research Center Mid-Year Pre-Conference Data Partners Gathering. Uncasville, CT.
• Rainie, S. C., & Rodriguez-Lonebear, D. (2017, May). United States Indigenous Nation Data Governance: Toward Data Sovereignty. Policy Forum: The Governance of Indigenous Data. Los Angeles, CA: Native Nations Institute at the University of Arizona, the University of California Los Angeles, and the US Indigenous Data Sovereignty Network.
• Rainie, S. C., & Rodriguez-Lonebear, D. (2017, September). Introduction to Indigenous Data Sovereignty and Governance. International Indigenous Data Sovereignty Interest Group session, "Generating Principles and Best Practices in Indigenous Data Sovereignty" at the Research Data Alliance 10th Plenary. Montreal, Quebec.
• Rainie, S. C., Garrison, N., & Hudson, M. (2017, July). Indigenous Data Sovereignty: Research, Ethics, and Genetics. University of Arizona Summer Internship for Indigenous Peoples in Genetics (SING). Tucson, AZ.
• Rodriguez-Lonebear, D., & Rainie, S. C. (2017, June). Laying the Groundwork: Why Tribes Need Data and Research. “Building Tribal Data Infrastructure” breakout session as part of the National Congress of American Indians Policy Research Center’s Tribal Leaders/Scholars Forum “Sovereign Infrastructure: Building Our Communities through Our Values”. Uncasville, CT.
• Rainie, S. C. (2015, November). Co-Production of Knowledge and Research Process. Weaving Together Two Worlds: Alaska Fish and Wildlife Co-Management Forum. Fairbanks, AK: University of Alaska, Fairbanks.
• Rainie, S. C. (2016, October). Center for Indigenous Environmental Health Research. Land Recycling and New Tools for Creating Healthy Communities and Economic Growth Workshop. Tucson, AZ.
• Rainie, S. C. (2016, September). Indigenous Data and Information Sovereignty: Making Open Data Work for Indigenous Peoples. Research Data Alliance (RDA) Breakout Session, International Data Week. Denver, CO: Exchange for Local Observations and Knowledge of the Arctic.
• Rainie, S. C., & Echo-Hawk, A. (2016, August). Nation Building for Wellness: Tribal Data Sovereignty for Healthy Indigenous Communities. National Tribal Forum for Excellence in Community Health Practice. Spokane, WA.
• Rainie, S. C., & Teufel-Shone, N. I. (2016, December). Center for Indigenous Environmental Health Research. Centers for Environmental Health Disparities Annual Meeting. Durham, NC: NIEHS, EPA, NIMHD.
• Rainie, S. C., Kahn, C., & Ore de Boehm, C. (2016, November). Nation Building for Tribal Wellness. Arizona Indian Education Youth Conference. Tucson, AZ.
• Rainie, S. C., Rodriguez-Lonebear, D., & Martinez, A. (2016, October). Indigenous Data Sovereignty: Making Open Data By and For Indigenous Peoples. Data + Indigenous Impact panel, International Open Data Conference IODC2016. Madrid, Spain.
• Rainie, S. C., Rodriguez-Lonebear, D., & Martinez, A. (2016, October). Indigenous Data Sovereignty: Making Open Data By and For Indigenous Peoples. Indigenous Open Data Summit, International Open Data Conference IODC2016. Madrid, Spain.
• Rainie, S. C., Rodriguez-Lonebear, D., & Martinez, A. (2016, October). Indigenous Data Sovereignty. A Presentation for Continuing Education Units to the U.S. Government Accountability OfficeGovernment Accountability Office, US.
• Rainie, S. C., Rodriguez-Lonebear, D., Martinez, A., Kukutai, T., & Sporle, A. (2016, October). "Data + Indigenous” Impact Panel. International Open Data Conference IODC2016. Madrid, Spain: International Open Data Conference.
• Rodriguez-Lonebear, D., & Rainie, S. C. (2016, May). Data Building is Nation Building: US Indigenous Data Sovereignty. In Pursuit of Indigenous Data Sovereignty: Directions and Challenges panel, Native American and Indigenous Studies Association Annual Meeting. Honolulu, HI.
• Rainie, S. C. (2015, May). Indigenous Data Governance and Open Data Futures. Indigenous Data and Open Governments Panel, 3rd International Open Data Governance Conference. Ottawa, ON: Canadian Government.
• Rainie, S. C., & Stull, G. (2015, December). Reframing Return on Investments for Tribal Colleges and Universities: Aligning Analyses with Tribal Priorities and Educations Missions. National Minority Serving Institutions Return on Investment Convening. Princeton, NJ: Penn Center for MSIs, Educational Testing Service.
• Schultz, J. L., Starks, R. R., & Rainie, S. C. (2015, June). Residence, Citizenship, and Connectedness for Young Adult American Indians. National Congress of American Indians Mid-Year Conference Policy Research Center’s Tribal Leaders/Scholars Forum sessions "Connecting Across Distance & Difference: Tribal Citizenship in a New Era,". St. Paul, MN.
• Rainie, S. C., & Schultz, J. L. (2014, June). The Strategic Power of Data: A Key Aspect of Sovereignty. National Congress of American Indians Mid-Year Conference Policy Research Center’s Tribal Leaders/Scholars Forum. Anchorage, AK.
• Rainie, S. C., & Schultz, J. L. (2014, November). The Strategic Power of Data: A Key Aspect of Sovereignty. 6th Biennial International Indigenous Development Research Conference 2014. Auckland, New Zealand.

Poster Presentations

• Carroll, S. R. (2020, July). Discussant at the Data Values and Indigenous Knowledge Panel for the CODATA Center of Excellence in Data for Society at the University of Arizona (CEDS) MiniForum. Extraction: Tracing the Veins virtual conference. Co-hosted by Massey University, New Zealand and Wageningen University and Research, The Netherlands.
• Natonabah, S., Lauro, B. D., David-Chavez, D. M., & Carroll, S. R. (2020). How are we supporting Indigenous data stewards?: Aligning Indigenous and federal environmental science research ethics guidelines,. SY020 Native Science to Action: How Indigenous Perspectives Inform, Diversity, and Build Capacity in Environmental Science and Policy Posters session at the American Geophysical Union Conference.
  More info

  Natonabah, Serena, Brianne Dewani Lauro**, Dominique M David-Chavez, Stephanie Carroll,.
• Martinez, A., & Carroll, S. R. (2019, December). Indigenous Data Sovereignty Summit in Arizona: Building Shared Understanding and Identifying Tribal Leaders Needs. PA51E-0926: Science to Action: Transformative Partnerships to Advance Decision-Relevant Science II Posters session at the American Geophysical Union Conference. San Francisco, CA: American Geophysical Union.
• David-Chavez, D., Rainie, S. C., Ferguson, D. B., LeRoy, S., Curley, A., Lane, T., & Yazzie, S. (2018, December). Supporting Tribal Data Governance for Community Climate Resilience: A Southwest Indigenous Climate Summit. PA43C: Indigenous Data Sovereignty: How Scientists and Researchers Can Empower Indigenous Data Governance session at the American Geophysical Union Confe. Washington DC.
• Martinez, A., & Rainie, S. C. (2018, December). Using Data Sharing Agreements as Tools of Indigenous Data Governance: Current Uses and Future Options. PA43C: Indigenous Data Sovereignty: How Scientists and Researchers Can Empower Indigenous Data Governance session at the American Geophysical Union Conference. Washington DC.
• Rainie, S. C., Ferguson, D. B., & Martinez, A. (2017, December). The Role of Reconciling Values in Efforts to Build Community Resilience to Global Environmental Change. American Geophysical Union Conference. New Orleans, LA.
• Rainie, S. C. (2015, June). Indigenous Community Wellness: Reimagining Indigenous Health. National Congress of American Indians Mid-Year Conference Policy Research Center’s Tribal Leaders/Scholars Forum. St. Paul, MN.
• Rainie, S. C., Cornell, S. E., Jorgensen, M. R., Starks, R. R., & Grogan, M. (2014, March). Self Determination and American Indian Health Care: The Shift to Tribal Control. Good Native Governance: Innovative Research in Law, Education, and Economic Development Conference. Los Angeles, CA.
• Schultz, J. L., Corral, S., Jorgensen, M. R., & Rainie, S. C. (2014, June). Women and Work: Gender and Employment in American Indian Nations 1990-2010. National Congress of American Indians Mid-Year Conference Policy Research Center’s Tribal Leaders/Scholars Forum. Anchorage, AK.
• Schultz, J. L., Corral, S., Jorgensen, M. R., & Rainie, S. C. (2014, March). Women and Work: Gender and Employment in American Indian Nations 1990-2010. Good Native Governance: Innovative Research in Law, Education, and Economic Development Conference. Los Angeles, CA.

Others

• Hudson, M., & Carroll, S. R. (2021, October). Technologies to Operationalize Indigenous Data Sovereignty. ElsiHub Collections. https://elsihub.org/collection/technologies-operationalize-indigenous-data-sovereignty
• Welch, E., Louafi, S., Carroll, S. R., Hudson, M., Ijsselmuiden, C., Kane, N., Leonelli, S., Marin, A., Özdemir, V., Reichman, J. H., Tuberosa, R., Ubalijoro, E., & Wesseler, J. (2021, March). Post COVID-19 Implications on Genetic Diversity and Genomics Research & Innovation: A Call for Governance and Research Capacity. http://www.fao.org/3/cb5573en/cb5573en.pdf
• Carroll, S. R., Hudson, M., Holbrook, J., Materrechera, S., & Anderson, J. (2020, November). Working with the CARE principles: operationalizing Indigenous Data Governance. Ada Lovelace Institute. https://www.adalovelaceinstitute.org/operationalising-indigenous-data-governance/
• Hiraldo, D., Carroll, S. R., David-Chavez, D., Jager, M. B., & Jorgensen, M. R. (2020, March). Policy Brief: Native Nation Rebuilding Lessons for Tribal Research and Data Governance.. Tucson: Native Nations Institute, University of Arizona..
• Carroll, S. R., & Hudson, M. (2019, September). CARE Principles for Indigenous Data Governance.. The Global Indigenous Data Alliance. GIDA-global.org.. http://gida-global.org/care
• Carroll, S. R., & Martinez, A. (2019, December). Policy Brief: Indigenous Data Sovereignty in Arizona.. Tucson: Native Nations Institute, University of Arizona and the Inter Tribal Council of Arizona..
• David-Chavez, D., Ferguson, D. B., Curley, A., Lane, T., Yazzie, S., White, S., & Carroll, S. R. (2019, December). Dominique David-Chavez, Daniel B. Ferguson, Andrew Curley, Travis Lane+, Sheldwin Yazzie, Sarah White,Policy Brief: Supporting Tribal Data Governance for Indigenous Community Climate Resilience.. Tucson: Native Nations Institute and Climate Assessment for the Southwest, University of Arizona..
• Garba, I., David-Chavez, D., Ballantyne, L., Hudson, M., Garrison, N., & Carroll, S. R. (2019, October). Comments responding to Request for Information (RFI) soliciting additional input to the All of Us Research Program 2019 Tribal Consultation (Notice Number: NOT-PM-19-004).
• Walter, M., Rodriguez-Lonebear, D., & Carroll, S. R. (2019, September). Onati Indigenous Data Sovereignty (ID-SOV) Communique. Te Mana Raraunga, United State Indigenous Data Sovereignty Network, Maiam nayri Wingara, The Global Indigenous Data Alliance. GIDA-global.org..
• Rainie, S. C., Rodriguez-Lonebear, D., & Martinez, A. (2017, December). Policy Brief: Indigenous Data Sovereignty in the United States. Tucson: Native Nations Institute University of Arizona.
• Rainie, S. C., Rodriguez-Lonebear, D., & Martinez, A. (2017, May). Policy Brief: Data Governance for Native Nation Rebuilding (Version 2). Tucson: Native Nations Institute University of Arizona.