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

Frontiers in Genetics

Nanibaa’ A. Garrison²  Desi Small-Rodriguez³  Vanessa Y. Hiratsuka⁴  Rebecca Plevel⁷  Ibrahim Garba^1,10  Stephanie Russo Carroll^1,10  Maui Hudson^1,11 

[1] 0Institute for Precision Health, David Geffen School of Medicine, University of California, Los Angeles, Los Angeles, CA, United States;1Division of General Internal Medicine and Health Services Research, David Geffen School of Medicine, University of California, Los Angeles, Los Angeles, CA, United States;American Indian Studies Program, College of Social Sciences, University of California, Los Angeles, Los Angeles, CA, United States;Center for Human Development, College of Health, University of Alaska Anchorage, Anchorage, AK, United States;Department of Sociology, College of Social Sciences, University of California, Los Angeles, Los Angeles, CA, United States;Institute for Society and Genetics, University of California, Los Angeles, Los Angeles, CA, United States;Law Library, School of Law, University of South Carolina, Columbia, SC, United States;Library and Information Sciences, School of Information, University of Arizona, Tucson, AZ, United States;Mel and Enid Zuckerman College of Public Health, University of Arizona, Tucson, AZ, United States;Native Nations Institute, Udall Center for Studies in Public Policy, University of Arizona, Tucson, AZ, United States;Te Kotahi Research Institute, University of Waikato, Hamilton, New Zealand;

关键词: genetic research;    Indigenous;    data sovereignty;    data governance;    CARE principles;   

DOI  :  10.3389/fgene.2022.823309

来源: DOAJ

【 摘 要 】

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.

【 授权许可】

Unknown