data collection

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

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

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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.

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Citation

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

Balancing openness with Indigenous data sovereignty: An opportunity to leave no one behind in the journey to sequence all of life

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The field of genomics has benefited greatly from its “openness” approach to data sharing. However, with the increasing volume of sequence information being created and stored and the growing number of international genomics efforts, the equity of openness is under question. The United Nations Convention of Biodiversity aims to develop and adopt a standard policy on access and benefit-sharing for sequence information across signatory parties. This standardization will have profound implications on genomics research, requiring a new definition of open data sharing. The redefinition of openness is not unwarranted, as its limitations have unintentionally introduced barriers of engagement to some, including Indigenous Peoples. This commentary provides an insight into the key challenges of openness faced by the researchers who aspire to protect and conserve global biodiversity, including Indigenous flora and fauna, and presents immediate, practical solutions that, if implemented, will equip the genomics community with both the diversity and inclusivity required to respectfully protect global biodiversity.

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Ann M. Mc Cartney, Jane Anderson, Libby Liggins, Maui L. Hudson, Matthew Z. Anderson, Ben TeAika, Janis Geary, Robert Cook-Deegan, Hardip R. Patel, Adam M. Phillippy. Balancing openness with Indigenous data sovereignty: An opportunity to leave no one behind in the journey to sequence all of life. Proceedings of the National Academy of Sciences. Jan 2022, 119 (4) e2115860119; DOI: 10.1073/pnas.2115860119

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.

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

Miriam Jorgensen on New Policy Brief Dissecting Round 1 Allocations of CARES Act Tribal Funding

Producer
Harvard Project on American Indian Economic Development
Year
Miriam Jorgensen, Research Director with the Harvard Project and with Native Nations Institute at the University of Arizona, discusses the release of a new Harvard Project and Native Nations Institute policy brief dissecting the US Treasury Department's round 1 allocations of CARES Act funding for tribal governments. The Treasury's population choice results in arbitrary and capricious allocations of funds.
 

Please contact us for the transcript of this video!

Good Data Practices for Indigenous Data Sovereignty

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Indigenous Data Sovereignty (IDS) and Indigenous Data Governance are Indigenous-led movements and practices through which Indigenous peoples are setting their own visions for good data regarding data generated and collected by and about them. IDS movements and practices can be seen as a manifestation of Indigenous peoples' sovereignty more generally and as an alternative vision of data, centreing Indigenous peoples' rights to self-determination and autonomy. IDS also challenges conventional, western colonial data practices, which have been utilised against Indigenous peoples since colonisation and continue to be used against them in the digital environment. The authors set out the context for, and emergence of, IDS movements and provide an overview of IDS developments including the IDS networks such as Te Mana Raraunga, the Maori Data Sovereignty Network in Aotearoa/New Zealand.

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Citation

Lovett, Ray, Vanessa Lee, Tahu Kukutai, Stephanie Carroll Rainie, Jennifer Walker. “Good Data Practices for Indigenous Data Sovereignty,” in Angela Daly, Kate Devitt, & Monique Mann (Eds.), Good Data, Amsterdam: Institute of Network Cultures Inc. ISBN 978-94-92302-27-4. http://networkcultures.org/wp-content/uploads/2019/01/Good_Data.pdf

Indigenous Peoples’ Rights in Data

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This is the one sheeter version of the publication "Indigenous Peoples' Rights in Data: a contribution toward Indigenous Research Sovereignty"

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.

 

Topics
Citation

Global Indigenous Data Alliance. (2023). “Indigenous Peoples’ Rights in Data.” The Global Indigenous Data Alliance. GIDA-global.org. DOI: 10.6084/m9.figshare.22138160

Science Seminar: Implementing the CARE Principles in Open Data Repositories

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Science Seminar: Implementing the CARE Principles in Open Data Repositories

The people and purpose-oriented CARE Principles (Collective Benefit, Authority to Control, Responsibility, and Ethics) reflect the crucial role of data in advancing innovation, governance, and self-determination among Indigenous Peoples. The CARE Principles complement and extend the more data-centric approach of the FAIR Principles (Findable, Accessible, Interoperable, and Reusable). This webinar is on the CARE Principles and how Indigenous governance and stewardship are recognized by the NSF's NEON Science in their collection of samples on Indigenous lands, air, water, and non-human relations.

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Stephanie Russo Carroll and Global Indigenous Data Alliance. "Science Seminar: Implementing the CARE Principles in Open Data Repositories". Feb. 14, 2023. Video. NEON Science. https://www.youtube.com/watch?v=xVJNd_jzQzg. Accessed Feb 26, 2023.

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

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Science Seminar: Implementing the CARE Principles in Open Data Repositories

Indigenous Data Sovereignty and Policy

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This book examines how Indigenous Peoples around the world are demanding greater data sovereignty, and challenging the ways in which governments have historically used Indigenous data to develop policies and programs. In the digital age, governments are increasingly dependent on data and data analytics to inform their policies and decision-making. However, Indigenous Peoples have often been the unwilling targets of policy interventions and have had little say over the collection, use and application of data about them, their lands and cultures. At the heart of Indigenous Peoples’ demands for change are the enduring aspirations of self-determination over their institutions, resources, knowledge and information systems. With contributors from Australia, Aotearoa New Zealand, North and South America and Europe, this book offers a rich account of the potential for Indigenous data sovereignty to support human flourishing and to protect against the ever-growing threats of data-related risks and harms.

Download individual chapters

 

Resource Type
Citation

Walter, M. (Ed.), Kukutai, T. (Ed.), Carroll, S. (Ed.), Rodriguez-Lonebear, D. (Ed.). (2021). Indigenous Data Sovereignty and Policy. London: Routledge, https://doi.org/10.4324/9780429273957