Using Indigenous Standards to Implement the CARE Principles: Setting Expectations through Tribal Research Codes
Affiliation
Mel and Enid Zuckerman College of Public Health, University of ArizonaNative Nations Institute, Udall Center for Studies in Public Policy, University of Arizona
Library and Information Sciences, School of Information, University of Arizona
Issue Date
2022
Metadata
Show full item recordPublisher
Frontiers Media S.A.Citation
Carroll, S. R., Garba, I., Plevel, R., Small-Rodriguez, D., Hiratsuka, V. Y., Hudson, M., & Garrison, N. A. (2022). Using Indigenous Standards to Implement the CARE Principles: Setting Expectations through Tribal Research Codes. Frontiers in Genetics.Journal
Frontiers in GeneticsRights
Copyright © 2022 Carroll, Garba, Plevel, Small-Rodriguez, Hiratsuka, Hudson and Garrison. This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY).Collection Information
This item from the UA Faculty Publications collection is made available by the University of Arizona with support from the University of Arizona Libraries. If you have questions, please contact us at repository@u.library.arizona.edu.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. Copyright © 2022 Carroll, Garba, Plevel, Small-Rodriguez, Hiratsuka, Hudson and Garrison.Note
Open access journalISSN
1664-8021Version
Final published versionae974a485f413a2113503eed53cd6c53
10.3389/fgene.2022.823309
Scopus Count
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Except where otherwise noted, this item's license is described as Copyright © 2022 Carroll, Garba, Plevel, Small-Rodriguez, Hiratsuka, Hudson and Garrison. This is an open-access article distributed under the terms of the Creative Commons Attribution License (CC BY).