data governance

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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Citation

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.

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

The SEEDS of Indigenous population health data linkage

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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.

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Rowe, R., Carroll, S. R. ., Healy, C., Rodriguez-Lonebear, D. and Walker, J. D. (2021) “The SEEDS of Indigenous Population Health Data Linkage”, International Journal of Population Data Science, 6(1). doi: 10.23889/ijpds.v6i1.1417.

Post COVID-19 Implications for Genetic Diversity and Genomics Research & Innovation: A Call for Governance and Research Capacity

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At a time of significant technological change and digitization in the biological sciences, the COVID-19 pandemic has highlighted again the inequities in the research and innovation ecosystem. Based on a consultation with an internationally diverse group of stakeholders from multiple fields and professions, and on a broadly representative set of case studies, this report offers a new approach to the global governance of genetic diversity and genomic research and innovation. We recommend that in addition to the many valuable efforts at the macro-policy level and at the micro-level of projects, teams and organizations, the global community concerned with genetic diversity and genomic research and innovation should devise and implement a meso-level initiative that includes three main components:

  1. First, it should establish a new professional capacity to govern research and innovation at the meso-level.Governance capacity, built through a networked community of practice, has the benefit of connecting and integrating macro-level policy intentions with micro-level actions. It facilitates a consistent professional basis from which local and regional level flexibilities can generate new norms of reflection that better integrate multiple synergies, reconcile tensions, recognizeinequities, and redress persistent inequalities.
  2. Second, the global community should redouble efforts to build research capacity in genomic research and innovation in the Global South and for Indigenous Peoples. Such an effort should be focused on broader programmatic objectives that facilitate cross-national and cross-regional collaboration, as well as enhancing research communities in the Global South and in Indigenous communities. Together, the twin capacities of governance and research can reduce power differentials among diverse actors and support crisis-based imperatives for data openness.
  3. Third, we recommend that existing global policy frameworks interface with research governance and capacity investment. This meso-level approach should gain the commitment and support from national and international policy bodies, embedded within existing specific issue-areas (health, agriculture, environment).

A new approach, one that can better respond to global crises though more open, inclusive and equitable participation in research and innovation, is necessary to resolve the tensions among openness, innovation and equity that the current discourse on genetic diversity reiterates. Failure to systematically address the social and technical governance challenges will result in further fragmentation, inequity and vulnerability for decades to come. Conversely, investing in the current historical moment of the pandemic to build twin capacities for meso-level governance and research is poised to prevent and/or reduce the impact of future ecological crises, while contributing to planetary sustainability and prosperity in the 21st century for current and future generations.

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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. Post COVID-19 Implications on Genetic Diversity and Genomics Research & Innovation: A Call for Governance and Research Capacity. Food and Agriculture Organization of the United Nations.

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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Citation

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

 

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

Year

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

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

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

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

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Indigenous Peoples around the globe have diverse narratives of resilience and adaptability; however, they are also acutely impacted by the negative social, economic, environmental and health outcomes of COVID-19 (UN Special Rapporteur on the rights of Indigenous Peoples, 2020). As such, it is vital that Indigenous Peoples are included in all aspects of pandemic-related surveillance, research, research planning, and policy.

Systemic policies, and historic and ongoing marginalisation, have led to Indigenous Peoples’ mistrust of agencies and the data/research they produce. For example, Indigenous nation-specific COVID-19 data in the United States have been released by government entities without tribal permission and knowledge. These sensitive data continue to be accessed and reused without consent from Indigenous governing bodies by the media, researchers, non-governmental organisations, and others.

Although this type of data usage is attempting to combat data invisibility of American Indians and Alaska Natives to address gaps, reporting of tribal-specific data is making tribes more visible in ways that can result in unintentional harm and ignores inherent Indigenous sovereign rights. Media perpetuation of misinformation and disinformation is amplifying confusion and harm to Indigenous Peoples.

To avoid increased distrust and harm, and to improve the quality and responsiveness of data activities, Indigenous data rights, priorities, and interests must be recognised in all COVID-19 research activities throughout the data lifecycle, and in ownership of any resulting innovations. We must also acknowledge that expressions of self-determination vary substantially across nation states due to conditions that also undermine the ability of Indigenous Peoples to govern data or enact sovereignty over data.

Native Nations
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RDA COVID-19 Indigenous Data WG. "Data sharing respecting Indigenous data sovereignty." In RDA COVID-19 Working Group (2020). Recommendations and guidelines on data sharing. Research Data Alliance. https://doi.org/10.15497/rda00052

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

Year

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

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