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.

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

• 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, 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(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(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.
• 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(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, 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.
• 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.
• 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.
• 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).
• 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., 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. 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.
• 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.
• 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., 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.
• Rainie, S. C., Rodriguez-Lonebear, D., & Martinez, A. (2019). Indigenous Data Governance: Strategies from United States Native Nations. Data Science Journal.
• 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.
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  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.