research

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

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

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Indigenous Peoples' right to sovereignty forms the foundation for advocacy and actions toward greater Indigenous self-determination and control across a range of domains that impact Indigenous Peoples' communities and cultures. Declarations for sovereignty are rising throughout Indigenous communities and across diverse fields, including Network Sovereignty, Food Sovereignty, Energy Sovereignty, and Data Sovereignty. Indigenous Research Sovereignty draws in the sovereignty discourse of these initiatives to consider their applications to the broader research ecosystem. Our exploration of Indigenous Research Sovereignty, or Indigenous self-determination in the context of research activities, has been focused on the relationship between Indigenous Data Sovereignty and efforts to describe Indigenous Peoples' Rights in data.

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

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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.

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

Using Indigenous Standards to Implement the CARE Principles: Setting Expectations through Tribal Research Codes

Year

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.

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Carroll Stephanie Russo, Garba Ibrahim, Plevel Rebecca, Small-Rodriguez Desi, Hiratsuka Vanessa Y., Hudson Maui, Garrison Nanibaa’ A. Using Indigenous Standards to Implement the CARE Principles: Setting Expectations through Tribal Research Codes. Frontiers in Genetics. Vol. 13. 2022. DOI=10.3389/fgene.2022.823309. https://www.frontiersin.org/article/10.3389/fgene.2022.823309

Indigenous Data Sovereignty: How Researchers can Empower Data Governance with Lydia Jennings

Producer
National Center for Ecological Analysis and Synthesis (NCEAS)
Year

Indigenous land management practices result in higher species richness, less deforestation, and land degradation than non-Indigenous strategies. Many environmental researchers, data repositories, and data service operations recognize the importance of collaborating with Indigenous nations, supporting their environmental stewardship practices, and aligning land stewardship mechanisms with Indigenous rights. Yet these individuals and organizations do not always know the appropriate processes to achieve these partnerships. Calls for government agencies to collaborate with Indigenous land stewards require an increasing awareness of what Indigenous data are and how to manage these data. Indigenous data sovereignty underscores Indigenous rights and interests and can provide a structure for data practices. In this seminar talk, Dr. Lydia Jennings discusses what constitutes Indigenous data, how to apply an Indigenous data sovereignty framework to environmental research, examples of Indigenous data governance, Tribal Nations’ leading the scientific inquiry process, and how environmental scientists can co-create with Indigenous communities to answer community-driven research questions.

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National Center for Ecological Analysis and Synthesis (NCEAS). 'Indigenous Data Sovereignty: How Researchers can Empower Data Governance' with Lydia Jennings. May 2021.

Improving Ethical Practice in Transdisciplinary Research Projects Webinar

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Transdisciplinary research, or research conducted by people from different disciplines and organizations working together to solve a common problem, holds promise for communities and scientists seeking to address complex socio-ecological problems like climate change. However, this collaborative research approach requires thoughtful consideration of ethical concepts to better account for working with individuals, communities and organizations as partners in, rather than subjects of, transdisciplinary research. This webinar will explore principles for improving ethical practice in transdisciplinary research in socio-ecological settings, such as appropriate representation, deference, self-determination and reciprocity. We will discuss opportunities to deepen ethical skills for researchers in all career stages to improve our transdisciplinary research in response to new challenges, contexts and societal needs.

Native Nations
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Wilmer, H., Meadow, A. M., Ferguson, D. B. (2020) Improving Ethical Practice in Transdisciplinary Research Projects Webinar. Northwest Adaptation Science Center. Webinar. https://vimeo.com/user83638479

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.

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.

Mātauranga and Science

Year

"Mātauranga Māori is not like an archive of information but rather is like a tool for thinking, organising information, considering the ethics of knowledge, the appropriateness of it all and informing us about our world and our place in it." (Mead 2003, p. 306)

Māori have become a pivotal force in New Zealand’s science system, with the torsion of tikanga Mäori inviting the system to open its doors to indigenous values. Increasingly mätauranga Māori – encompassing Māori knowledge, Māori methods of knowledge creation and Māori ways of knowing – is being consulted, aligned with or brought into conversation with science. As the guest editors for Mätauranga and Science in Practice, we wanted a space in which people who are engaged at these interfaces could share their experiences of working with mätauranga alongside New Zealand science, bound as it is by inherited norms, practices, institutional traditions, and various Crown poli-cies. The audience for this conversation includes tohunga, philosophers, scientists, kaumātua, researchers, academics, kaiako, communities, public servants, kaimahi, students and anyone else who is interested in science, more broadly, and the unique contribution that an Aotearoa New Zealand science could make to the world.

Native Nations
Citation

Mātauranga and Science. Allen Petrey, Ed. New Zealand Science Review. Vol 75 (4) 2019