Stephanie Russo Carroll

Indigenous Peoples and research: self-determination in research governance

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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.

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Garba I, Sterling R, Plevel R, Carson W, Cordova-Marks FM, Cummins J, Curley C, David-Chavez D, Fernandez A, Hiraldo D, Hiratsuka V, Hudson M, Jäger MB, Jennings LL, Martinez A, Yracheta J, Garrison NA and Carroll SR. Indigenous Peoples and research: self-determination in research governance. (2023). Front. Res. Metr. Anal. 8:1272318. doi: 10.3389/frma.2023.1272318

Applying the ‘CARE Principles for Indigenous Data Governance’ to ecology and biodiversity research

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Indigenous Peoples are increasingly being sought out for research partnerships that incorporate Indigenous Knowledges into ecology research. In such research partnerships, it is essential that Indigenous data are cared for ethically and responsibly. Here we outline how the ‘CARE Principles for Indigenous Data Governance’ can sow community ethics into disciplines that are inundated with extractive helicopter research practices, and we provide standardized practices for evolving data and research landscapes.

Citation

Jennings, L., Anderson, T., Martinez, A. et al. Applying the ‘CARE Principles for Indigenous Data Governance’ to ecology and biodiversity research. Nat Ecol Evol (2023). https://doi.org/10.1038/s41559-023-02161-2

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

Water Back: A Review Centering Rematriation and Indigenous Water Research Sovereignty

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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 way of knowing, doing, and being as a foundation for advancing Indigenous Water research.

Citation

Leonard, K.; David-Chavez, D.; Smiles, D.; Jennings, L.; ʻAnolani Alegado, R.; Tsinnajinnie, L.; Manitowabi, J.; Arsenault, R.; Begay, R.L.; Kagawa-Viviani, A.; Davis, D.D.; van Uitregt, V.; Pichette, H.; Liboiron, M.; Moggridge, B.; Russo Carroll, S.; Tsosie, R.L. and Gomez, A. 2023. Water back: A review centering rematriation and Indigenous Water research sovereignty. Water Alternatives 16(2).

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

Year

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.

Citation

Hudson Maui, Carroll Stephanie Russo, Anderson Jane, Blackwater Darrah, Cordova-Marks Felina M., Cummins Jewel, David-Chavez Dominique, Fernandez Adam, Garba Ibrahim, Hiraldo Danielle, Jäger Mary Beth, Jennings Lydia L., Martinez Andrew, Sterling Rogena, Walker Jennifer D., Rowe Robyn K. Indigenous Peoples' Rights in Data: a contribution toward Indigenous Research Sovereignty. (2023).  Frontiers in Research Metrics and Analytics. 8. DOI=10.3389/frma.2023.1173805  https://www.frontiersin.org/articles/10.3389/frma.2023.1173805

Extending the CARE Principles from tribal research policies to benefit sharing in genomic research

Year

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.

Native Nations
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Carroll SR, Plevel R, Jennings LL, Garba I, Sterling R, Cordova-Marks FM, Hiratsuka V, Hudson M and Garrison NA (2022), Extending the CARE Principles from tribal research policies to benefit sharing in genomic research. Front. Genet. 13:1052620. doi: 10.3389/fgene.2022.1052620

Archaeology and Social Justice in Native America

Year

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.

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Laluk, N., Montgomery, L., Tsosie, R., McCleave, C., Miron, R., Carroll, S., . . . Schneider, T. (2022). Archaeology and Social Justice in Native America. American Antiquity, 1-24. doi:10.1017/aaq.2022.59

Expanded Ethical Principles for Research Partnership and Transdisciplinary Natural Resource Management Science

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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.

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Citation

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. https://doi.org/10.1007/s00267-021-01508-4

COVID-19 and Indigenous Peoples: Tools to Promote Equity and Best Practices

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This is the second volume of a two-volume special issue of the American Indian Culture and Research Journal, volume 44.3, dedicated to the indirect impact of COVID-19 on Indigenous Peoples. The first volume (44.2) covers the degree to which Indigenous Peoples were affected by COVID-19 and how this has resulted in a number of responses at the community and local levels. In particular, three articles conducted different surveys in order to assess the levels of stress, coping, and resil-ience among Indigenous Peoples in the United States and relative to non-Indigenous peoples. The observed higher levels of stress are consistent with expectations given existing disparities in health access and care for these US populations. The first volume also provides some insight into the progression of the COVID-19 pandemic in New Zealand and Canada. While these Indigenous Peoples have not, at least up to this point, experienced as many cases or deaths due to COVID-19 as Indigenous Peoples in the United States, the papers from those countries highlight the ongoing need for prevention and awareness for especially vulnerable populations, as well as inclusion in national planning efforts.

The articles in this issue provide specific research and insights for improving the reporting, identifying, and prevention of COVID-19 cases and deaths. The first two articles focus on the concept of identification in national, regional and local health data. For small populations, and, in particular, Indigenous Peoples, it is imperative that data collection provide detailed information on race and tribal nation identifiers. These measures, difficult to implement, are vital for identifying the spread and transmission of contagious diseases in small communities. In the absence of this information, these populations quickly may be inundated by cases without much warning.

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Carroll, Stephanie; Randall Akee, Chandra Ford, eds. Tools to Promote Equity and Best Practices. (2020). American Indian Culture and Research Journal. Vol. 44, No. 3. American Indian Studies Center, UCLA, Los Angeles, CA.

COVID-19 and Indigenous Peoples: Impact of and Response to the Pandemic

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In a two-volume, special edition of the American Indian Culture and Research Journal—volume 44, issues 2 and 3—we examine COVID-19’s unique implications for Indigenous Peoples, nations, and communities. We organized these special issues because the COVID-19 pandemic has particularly adversely affected Indigenous Peoples within the United States. In February 2021, the United States has the highest number of COVID-19 cases of any country in the world—nearly 28 million, more than twice that of the second-highest country, India, which has 11 million cases. Within the United States, COVID-19 differs substantially across demographic groups and communities. African Americans, Hispanics, and American Indians have experi-enced substantially higher levels of COVID-19 infection and death. American Indians, in particular, are quite vulnerable to COVID-19; death rates have been 1.5 times those for non-Hispanic whites, while infection rates are 3.5 times those for non-Hispanic whites.

The impact of COVID-19 on Indigenous Peoples residing in other countries differs according to the overall national strategy for dealing with the pandemic. In Australia and New Zealand, where COVID-19 strategies have been particularly stringent, the impact has not been as severe as in the United States; however, there is still some evidence that Indigenous Peoples are more likely to be affected. We have less evidence for other parts of the world, especially in South and Central America. In Canada, at least at the beginning of the pandemic, the impacts on First Nations has been less dire than compared to the general Canadian population; however, in recent months, there have been increased case rates on reserves in the western Canadian provinces.

The structural racism of colonialism is the driver of myriad negative outcomes for Indigenous Peoples, and the effects of COVID-19 are no exception. The articles in this first special issue, AICRJ 44.2, take a granular and intersectional look at the impact of the pandemic, the resilience of Indigenous communities, and the relevance of self-determination in public responses. These articles document specific programs and methods to combat and cope with COVID-19 effects in Indigenous communities and nations.

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Carroll, Stephanie; Randall Akee, Chandra Ford, eds. COVID-19 and Indigenous Peoples: Impact of and Response to the Pandemic. (2020). American Indian Culture and Research Journal. Vol. 44, No. 2. American Indian Studies Center, UCLA, Los Angeles, CA.

Case Report: Indigenous Sovereignty in a Pandemic: Tribal Codes in the United States as Preparedness

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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.

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Hiraldo D, James K and Carroll SR (2021) Case Report: Indigenous Sovereignty in a Pandemic: Tribal Codes in the United States as Preparedness. Frontiers in Sociology. 6:617995. doi: 10.3389/fsoc.2021.617995