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Cited by 95Indigenous Health, Education, and RightsEthics in Clinical ResearchRace, Genetics, and Society

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

Open access
Carroll, Stephanie Russo, Garba, Ibrahim, Plevel, Rebecca, Small-Rodriguez, Desi, Hiratsuka, Vanessa Y., Hudson, Maui, Garrison, Nanibaa’ A.·2022·Frontiers in Genetics
DOI 10.3389/fgene.2022.823309PMC PMC8977641
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Abstract

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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  3. Reference list28 references found
  4. Reference checkChecking each cited work — 30 of 30
  5. StatisticsRecomputed
  6. Claims53 claims anchored to a quote
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  9. VerificationFindings verified

AI snapshot

Written from the paper’s full text.

TL;DR

This article argues that the CARE Principles for Indigenous Data Governance should complement FAIR data principles and that tribal research codes already set expectations for implementing CARE in biomedical data governance. It maps CARE sub-principles to quotes from Native nations’ research documents and offers recommendations for tribes, institutions, and ethical practice.

Key findings

  • The paper positions CARE—Collective benefit, Authority to control, Responsibility, and Ethics—as people- and purpose-oriented standards to be used alongside FAIR for Indigenous data.
  • It shows how tribal research codes operationalize CARE expectations, including tribal oversight, community consultation, benefit sharing, data ownership, confidentiality, secondary-use consent, and capacity building (Table 2).
  • It reports that the US federal government recognizes 574 tribes as sovereign nations, while approximately 78% of self-identified American Indian and Alaska Native individuals live off tribal lands and approximately 60% primarily reside in urban areas.
  • It cites NCAI Resolution ABQ-19-061, which calls on NIH to consult with tribal nations, provide tribal oversight over data and biospecimens from tribal citizens, and restrict use of data associated with tribal nations until tribal oversight is in place.

Methods

  • Conceptual and policy analysis, not an empirical study; the authors outline relationships among sovereignty, ethics, Indigenous Data Sovereignty, and data governance.
  • Draws on the CARE Principles and on federal- and state-recognized Native nations’ research regulations, codes, and protocols to illustrate tribal expectations for implementing CARE.
  • Main analysis is qualitative: it maps quotes from tribal documents to CARE principles and sub-principles in Table 2, then derives recommendations for tribal law and policy, international/federal/institutional guidelines, and evolving ethical practices.

Limitations

  • The paper does not state a formal limitations section.
  • Stated in the text: non-federally-recognized tribes and Indigenous Peoples worldwide may experience issues in exercising data rights that differ from federally-recognized tribes, though the authors posit that learnings from federally-recognized tribes’ codes can broadly benefit Indigenous Peoples.
  • Stated in the text: each Native nation’s written standards apply only to research relationships with that nation and must be balanced with ongoing community relationships; when no laws exist, institutions, researchers, and funders must engage tribal nations for approvals and guidance.
  • Evident from the text: the analysis is conceptual and does not empirically test implementation or outcomes of the CARE Principles in practice.

Model-written summary. Check it against the paper before relying on it.

Integrity signals

Registry

Crossref · 10.3389/fgene.2022.823309

Cites

30 of 30 references verified0 citation errors · 0 not checkable

Statistics

Nothing to recompute.

Claims the paper makes

12 of 59 cited sources checked · 6 supported · 0 flagged · accuracy not yet measured

  • Premisecitation

    Other Native nations rely on tribal colleges, tribal organizations, or the Indian Health Service to provide research oversight on their behalf.

    “Other Native nations rely on tribal colleges, tribal organizations, or the Indian Health Service to provide research oversight on their behalf (Around Him et al., 2019).”
    Quote in the paperNot a substantial claim1 of 1 sources checked
    • cites Around Him et al., 2019 source
  • Premisecitation

    Federally-recognized tribes are in the strongest legal position to assert authority over their data.

    “Federally-recognized tribes are in the strongest legal position to assert authority over their data (Tsosie, 2019).”
    Quote in the paperSubstantial claim1 of 1 sources checked
    • cites Tsosie, 2019
  • Premisecitation

    The NIH Genomic Data Sharing policy allows a data sharing exception that recognizes some tribal laws may not permit broad data sharing.

    “However, the policy allows a data sharing exception that recognizes some tribal laws may not permit broad data sharing (Hiratsuka et al., 2020).”
    Quote in the paperSubstantial claim1 of 1 sources checked
    • cites Hiratsuka et al., 2020 source

      The Data sharing section (page unavailable) says the NIH Genomic Data Sharing Policy includes exceptions that can be tailored to Alaska Native communities’ data-sharing decisions. It does not say that these exceptions specifically recognize tribal laws that prohibit broad data sharing. (LLM, conf=0.85)

      Experimental — accuracy not yet measured
  • Premisecitation

    Indigenous communities have often challenged the extractive nature of genetic research.

    “This disconnect is clearly evident in the case of Indigenous communities who have often challenged the extractive nature of genetic research (Boyer et al., 2007; Shaw et al., 2013; Trinidad et al., 2015; Haring et al., 2018; Chadwick et al., 2019; Dirks et al., 2019).”
    Quote in the paperSubstantial claim2 of 3 sources checked
    • cites Boyer et al., 2007 source
    • cites Shaw et al., 2013 source
    • cites Trinidad et al., 2015 source

      The Introduction says genetic research can raise concerns about misuse or misappropriation, and Results (‘Interest in genetic information varies’) acknowledges negative experiences of Indigenous communities. But the paper does not establish that Indigenous communities have often challenged research as extractive; the Yup’ik participants it studied were receptive to genetic research. (LLM, conf=0.84)

      Experimental — accuracy not yet measured
  • Findingcitation

    Some tribal codes stress the need for researchers to respect tribal claims to ownership of specimens and data.

    “while others stress the need for researchers to respect those claims (Mohawk Nation of Akwesasne, 1996; Cherokee Nation, 2019b).”
    Quote in the paperNot a substantial claim0 of 2 sources checked
    • cites Mohawk Nation of Akwesasne, 1996

      Couldn’t be matched to a paper in Crossref, so it can’t be checked.

    • cites Cherokee Nation, 2019b

      Couldn’t be matched to a paper in Crossref, so it can’t be checked.

  • May combine two claims. 10
  • Classified as probably not a substantial claim. 18

  • May combine two claims.

    Premisecitation

    Indigenous individuals' concerns about privacy and confidentiality extend to promotion of tribal rights to control data and protection of collective tribal confidentiality and privacy in data and research.

    “Indigenous individuals’ concerns about privacy and confidentiality also extend to promotion of tribal rights to control data and protection of collective tribal confidentiality and privacy in data and research (Taitingfong et al., 2020).”
    Quote in the paperSubstantial claim1 of 1 sources checked
    • cites Taitingfong et al., 2020 source

  • Classified as probably not a substantial claim.

    Premisecitation

    Indigenous data include information, knowledge, specimens, and belongings about Indigenous Peoples to which they relate at both the individual and collective levels.

    “Indigenous data, whether born digital or not, include information, knowledge, specimens, and belongings about Indigenous Peoples to which they relate at both the individual and collective levels (Carroll et al., 2020; Rainie et al., 2019; Lovett et al., 2019).”
    Quote in the paperSubstantial claim2 of 3 sources checked
    • cites Carroll et al., 2020 source

      In “The Emergence of Indigenous Data Sovereignty” (page unavailable), the paper includes information and knowledge about Indigenous persons and collectives in its description of Indigenous data, and mentions belongings. The passage does not explicitly include specimens or distinguish data born digital from other forms. (LLM, conf=0.84)

      Experimental — accuracy not yet measured
    • cites Rainie et al., 2019 source

      The Introduction (p. 301) defines Indigenous data broadly to include digital data, information, and knowledge about Indigenous individuals and collectives. It does not identify specimens or belongings as Indigenous data, so those parts of the attributed claim are unsupported. (LLM, conf=0.88)

      Experimental — accuracy not yet measured
    • cites Lovett et al., 2019

      Couldn’t be matched to a paper in Crossref, so it can’t be checked.

  • Classified as probably not a substantial claim.

    Interpretationcitation

    The CARE Principles and sub-principles enhance and extend the FAIR Principles by centering equity and ethics as core guiding principles alongside those set out by FAIR.

    “The CARE Principles and the sub-principles (see Table 1) enhance and extend the ‘FAIR Principles’ for scientific data management (Findable, Accessible, Interoperable, Reusable; Wilkinson et al., 2016) by centering equity and ethics as core guiding principles alongside those set out by FAIR.”
    Quote in the paperSubstantial claim1 of 1 sources checked
    • cites Wilkinson et al., 2016 source

  • May combine two claims.

    Premisecitation

    The CARE Principles are in the early stages of implementation, with some entities leading the way by collaborating with GIDA to operationalize the principles within repositories, national ethics frameworks, and United Nations open science guidance.

    “The CARE Principles are in the early stages of implementation, with some entities leading the way by collaborating with the Global Indigenous Data Alliance (GIDA) to operationalize the principles within repositories, national ethics frameworks, and United Nations open science guidance (Australian Institute of Aboriginal and Torres Strait Islander Studies, 2020; Carroll et al., 2021; United Nations”
    Quote in the paperNot a substantial claim1 of 3 sources checked
    • cites Australian Institute of Aboriginal and Torres Strait Islander Studies, 2020

      Couldn’t be matched to a paper in Crossref, so it can’t be checked.

    • cites Carroll et al., 2021 source

      Split into 2 atoms — 1 confirmed, 1 partially supported, 0 disputed, 0 misattributed, 0 unverifiable. Expand the claim to see per-atom verdicts.

      Experimental — accuracy not yet measured
    • cites United Nations Educational Scientific and Cultural Organization, 2021

      Couldn’t be matched to a paper in Crossref, so it can’t be checked.

  • Probably not a substantial claim: may not pass S3 (load-bearing).

    Premisecitation

    The CARE Principles reflect the crucial role of data in advancing Indigenous innovation and self-determination by focusing on people and purpose-oriented standards to be used alongside mainstream data guidelines.

    “The CARE Principles reflect the crucial role of data in advancing Indigenous innovation and self-determination by focusing on people and purpose-oriented standards to be used alongside mainstream data guidelines (Carroll et al., 2020).”
    Quote in the paperNot a substantial claim1 of 1 sources checked
    • cites Carroll et al., 2020 source

  • Probably not a substantial claim: may not pass S3 (load-bearing).

    Premisecitation

    Large international genomics consortia are already implementing the FAIR principles.

    “Large international genomics consortia are already implementing the FAIR principles”
    Quote in the paperNot a substantial claim1 of 1 sources checked
    • cites Wilkinson et al., 2016 source

      The ‘Examples of FAIRness, and the resulting value-added’ section describes life-science resources pursuing FAIR objectives, but does not say that large international genomics consortia are implementing the principles. Searches for ‘genomics consortia,’ ‘international genomics consortium,’ ‘consortia,’ and ‘genomic’ found no passage establishing that specific claim; page numbers were unavailable. (LLM, conf=0.72)

      Experimental — accuracy not yet measured

  • Classified as probably not a substantial claim. May combine two claims.

    Findingreasoning

    Tribal expectations include alignment with tribal priorities, recognizing the locus of control for tribal data, supporting respectful relationships, and addressing inequities in research.

    “Tribal expectations include alignment with tribal priorities, recognizing the locus of control for tribal data, supporting respectful relationships, and addressing inequities in research.”
    Quote in the paperSubstantial claim
    • Rests on an assumption: The tribal research codes and documents cited in Table 2 are representative of tribal expectations for research governance.

  • Probably not a substantial claim: may not pass S2 (checkable), S4 (based).

    Interpretationreasoning

    Learnings from federally-recognized tribes' codes can broadly benefit Indigenous Peoples as they implement laws, policies, and practices to govern their data and research.

    “However, we posit that learnings from federally-recognized tribes’ codes can broadly benefit Indigenous Peoples as they implement laws, policies, and practices to govern their data and research.”
    Quote in the paperNot a substantial claim

  • May combine two claims.

    Premisecitation

    Tribal citizenship is not the same as self-identification nor is it the same as genetic ancestry.

    “Also called tribal enrollment, tribal citizenship is not the same as self-identification nor is it the same as genetic ancestry (Tallbear, 2013).”
    Quote in the paperSubstantial claim0 of 1 sources checked
    • cites Tallbear, 2013 source

  • Classified as probably not a substantial claim.

    Premisecitation

    IDSov returns authority over data about Indigenous nations and their citizens, communities, and resources back to the tribes from whom the data derive.

    “IDSov returns authority over data about Indigenous nations and their citizens, communities, and resources (wherever they may be located) back to the tribes from whom the data derive (Kukutai and Taylor, 2016b).”
    Quote in the paperSubstantial claim0 of 1 sources checked
    • cites Kukutai and Taylor, 2016b

      Couldn’t be matched to a paper in Crossref, so it can’t be checked.

  • Probably not a substantial claim: may not pass S3 (load-bearing). May combine two claims.

    Premisecitation

    IDGov enables tribal ways of knowing and doing to guide Indigenous decision-making and is a practical expression of IDSov.

    “Indigenous Data Governance (IDGov) enables tribal ways of knowing and doing to guide Indigenous decision-making; it is a practical expression of IDSov (Rainie et al., 2017; Maiam nayri Wingara, 2018).”
    Quote in the paperNot a substantial claim0 of 2 sources checked
    • cites Rainie et al., 2017

      Couldn’t be matched to a paper in Crossref, so it can’t be checked.

    • cites Maiam nayri Wingara, 2018

      Couldn’t be matched to a paper in Crossref, so it can’t be checked.

  • May combine two claims.

    Premisecitation

    Approximately 78% of self-identified American Indian and Alaska Native individuals live off tribal lands, and approximately 60% primarily reside in urban areas.

    “Approximately 78% of self-identified American Indian and Alaska Native individuals live off tribal lands, and approximately 60% primarily reside in urban areas (Norris et al., 2012).”
    Quote in the paperSubstantial claim0 of 1 sources checked
    • cites Norris et al., 2012

      Couldn’t be matched to a paper in Crossref, so it can’t be checked.

  • May combine two claims.

    Premisecitation

    As sovereign nations, tribes have the power to govern via their own structures, determine their own citizenship, and regulate tribal business.

    “As sovereign nations, tribes have the power to govern via their own structures, determine their own citizenship, and regulate tribal business (Duthu, 2008).”
    Quote in the paperSubstantial claim0 of 1 sources checked
    • cites Duthu, 2008

      Couldn’t be matched to a paper in Crossref, so it can’t be checked.

  • Classified as probably not a substantial claim.

    Interpretationreasoning

    This political designation is the foundation for IDSov.

    “This political designation is the foundation for IDSov.”
    Quote in the paperSubstantial claim

  • Classified as probably not a substantial claim.

    Premisecitation

    IDSov articulates the rights of Indigenous Peoples and nations to govern the collection, application, and use of data about their peoples, communities, lands, and resources.

    “At a fundamental level, IDSov articulates the rights of Indigenous Peoples and nations to govern the collection, application, and use of data about their peoples, communities, lands, and resources (Kukutai and Taylor, 2016b).”
    Quote in the paperSubstantial claim0 of 1 sources checked
    • cites Kukutai and Taylor, 2016b

      Couldn’t be matched to a paper in Crossref, so it can’t be checked.

  • Classified as probably not a substantial claim.

    Premisecitation

    The CARE Principles define Collective benefit, Authority to control, Responsibility, and Ethics, and their relationship to engagement with and for secondary use of Indigenous data.

    “The CARE Principles define Collective benefit, Authority to control, Responsibility, and Ethics, and their relationship to engagement with and for secondary use of Indigenous data (Research Data Alliance Interest Group, 2019).”
    Quote in the paperSubstantial claim0 of 1 sources checked
    • cites Research Data Alliance Interest Group, 2019

      Couldn’t be matched to a paper in Crossref, so it can’t be checked.

  • Probably not a substantial claim: may not pass S2 (checkable). May combine two claims.

    Premisereasoning

    American Indian and Alaska Native populations are not simply ethnic or racial groups, nor are they vulnerable or "special" populations.

    “American Indian and Alaska Native populations are not simply ethnic or racial groups, nor are they vulnerable or “special” populations.”
    Quote in the paperNot a substantial claim

  • Probably not a substantial claim: may not pass S4 (based).

    Premisenone given

    Tribal citizenship is a political designation similar to US citizenship.

    “Tribal citizenship is a political designation similar to US citizenship.”
    Quote in the paperNot a substantial claim

  • Classified as probably not a substantial claim. May combine two claims.

    Premisecitation

    The federal government recognizes 574 tribes in the US as sovereign nations with their own legal and political structures to govern their citizens and homelands.

    “The federal government recognizes 574 tribes in the US as sovereign nations with their own legal and political structures to govern their citizens and homelands (Department of the Interior, 2021).”
    Quote in the paperSubstantial claim0 of 1 sources checked
    • cites Department of the Interior, 2021

      Couldn’t be matched to a paper in Crossref, so it can’t be checked.

  • Probably not a substantial claim: may not pass S4 (based). May combine two claims.

    Premisenone given

    Tribes maintain a unique political status and confer citizenship just like other nation states.

    “Tribes maintain a unique political status and confer citizenship just like other nation states.”
    Quote in the paperNot a substantial claim

  • Probably not a substantial claim: may not pass S4 (based).

    Interpretationreasoning

    Indigenous research governance becomes a mechanism for enhancing IDGov as tribes assert IDSov.

    “Thus, Indigenous research governance becomes a mechanism for enhancing IDGov as tribes assert IDSov.”
    Quote in the paperNot a substantial claim

  • Probably not a substantial claim: may not pass S2 (checkable), S3 (load-bearing), S4 (based).

    Interpretationnone given

    Issues in research agreements pertaining to data reflect broad tribal concerns about specimens.

    “Issues in research agreements pertaining to data reflect broad tribal concerns about specimens.”
    Quote in the paperNot a substantial claim

  • Classified as probably not a substantial claim.

    Interpretationreasoning

    The CARE Principles, especially as indicated by tribal research codes, delineate standards for research practice.

    “The CARE Principles, especially as indicated by tribal research codes, delineate standards for research practice.”
    Quote in the paperSubstantial claim
23 of 23

  • The paper relies on this without support.

    The tribal research codes and documents cited in Table 2 are representative of tribal expectations for research governance.

    “We draw on federal- and state-recognized Native nations’ research regulations (Table 2) to illustrate how these official documents’ assertions of IDSov set tribal expectations for enacting the CARE Principles.”

  • The paper relies on this without support.

    The allowable exceptions to the NIH Genomic Data Sharing policy are not clearly understood or recognized by all researchers, institutions, or journal editors.

    “A resulting concern about the data sharing policy is that the allowable exceptions are not clearly understood or recognized by all researchers, institutions, or journal editors.”

  • The paper relies on this without support.

    Some investigators who conduct research with Indigenous communities have been asked by journal editors to submit data to federal databases even when the agreement with the tribe is not to share data.

    “For example, some investigators who conduct research with Indigenous communities have been asked by journal editors to submit the data to federal databases, even when the agreement with the tribe is not to share data.”

  • The paper relies on this without support.

    Some tribal laws and policies dictate that all data generated from a research study is property of the tribe and all data must be returned to the tribe at the conclusion of the study.

    “Some tribal laws and policies dictate that all data generated from a research study is property of the tribe and all data must be returned to the tribe at the conclusion of the study.”

  • The paper relies on this without support.

    Each Native nation's written standards apply to research relationships with that nation only.

    “Importantly, each Native nations’ written standards apply to research relationships with that nation only.”
5 of 5

Cites

Flagged first, then by citations

Research works printed but not linked: 14

  1. 2020, AIATSIS Code of Ethics for Aboriginal and Torres Strait Islander Research
  2. Kukutai, Indigenous Data Sovereignty: Toward an Agenda
  3. Protocol for Review of Environmental and Scientific Research Proposals, Akwesasne Task Force on the Environment and Research Advisory Committee1996
  4. Re: All of Us Research Program Tribal Consultation
  5. Resolution ABQ-19-061 - Calling upon the National Institutes of Health to Consult with Tribal Nations and Establish Policies and Guidance for Tribal Oversight of Data on Tribal Citizens Enrolled in the
  6. 2021, Consultation Support Center
  7. 2014, Genomic Data Sharing Policy, Fed. Regist., 79, 16751345
  8. Norris, 2012, The American Indian and Alaska Native Population: 2010
  9. Rainie, 2017, Policy Brief (Version 2): Data Governance for Native Nation Rebuilding
  10. Carroll, 2019, CARE Principles for Indigenous Data Governance
  11. Research Code. 17 Tohono O’odham Code Chapter 82013
  12. 2018, All of Us Research Program Advisory Panel
  13. 2021, UNESCO Recommendation on Open Science
  14. Welch, 2021, Post COVID-19 Implications on Genetic Diversity and Genomics Research & Innovation: A Call for Governance and Research Capacity

Cited by

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Related

Authors
Carroll, S. R., Garba, I., Plevel, R., Small-Rodriguez, D., Hiratsuka, V. Y., Hudson, M., & Garrison, N. A.
Affiliations
  • University of Arizona (US)
  • University of Alaska Anchorage (US)
  • University of Waikato (NZ)
  • University of California, Los Angeles (US)
Corresponding author
Garrison, Nanibaa’ A.
ORCID
Venue
Frontiers in Genetics
Publisher
Frontiers Media SA
Published
2022-03-21
Volume
13
Pages
823309-823309
ISSN
1664-8021 (ISSN-L)
DOI
10.3389/fgene.2022.823309
PMC
PMC8977641
OpenAlex
W4220790896
Semantic Scholar
80a3377244a780ac6e2ccec0d8ba58617c8065db
Cited by
95
References
28
Citations by year
2026: 18 · 2025: 30 · 2024: 19 · 2023: 21 · 2022: 7
FWCI
14.78
Type
journal article
Language
en
Open access
Licence
Locations
  • Frontiers in Genetics (publishedVersion, cc-by)
  • PubMed Central (publishedVersion, cc-by)
  • PubMed (publishedVersion)
  • UA Campus Repository (The University of Arizona) (acceptedVersion, cc-by)
  • DOAJ (DOAJ: Directory of Open Access Journals) (submittedVersion)
Funders
Udall Foundation
Topics
  • Social Sciences › Health › Indigenous Health, Education, and Rights
  • Health Sciences › Medicine › Public Health, Environmental and Occupational Health › Ethics in Clinical Research
  • Life Sciences › Biochemistry, Genetics and Molecular Biology › Genetics › Race, Genetics, and Society
Keywords
Indigenous data sovereignty, CARE principles, FAIR principles, Indigenous data governance, genetic research ethics, biomedical data sharing, data governance, indigenous rights, research ethics guidelines

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