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

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.

Extending the CARE Principles from tribal research policies to benefit sharing in genomic research

“…This paper extends the authors' work on Indigenous Peoples' expectations regarding genomic research (Garrison et al, 2019;Hudson et al, 2020) and how tribes set research and data expectations through codes and policies (Hiraldo et al, 2021;Carroll et al, 2022). Using legal epidemiology, the study and deployment of law as a factor in the cause, distribution, and prevention of harm and injury in a population (Burris et al, 2016), we describe how research legislation, policy, and processes from 26 tribes in the US shape benefit sharing expectations in research.…”

“…Indigenous data, whether born digital or not, include information and knowledge (also specimens and material belongings) about Indigenous Peoples at the individual or collective levels (Lovett et al, 2019;Rainie et al, 2019). IDSov maintains that Indigenous Peoples hold authority over data about their nations, citizens, communities, and non-human relations, regardless of the location of those data (Kukutai and Taylor, 2016b;Carroll et al, 2022).…”

Pace and space in the practice of aDNA research: Concerns from the periphery

“…On a positive note, there are academic and public well‐founded motivations related to ethnic and cultural identities and sovereignties in the Global North which intertwine to push the big aDNA laboratories (in the core) to develop best practices with proper ethical considerations. This dynamic is being driven mostly by Indigenous researchers belonging to peripheral spaces in the Global North, as well as their allies, and have made visible the need for ethical committees from journals and funding agencies to request transparency and detailed information on permits and consent obtained by researchers (Bardill et al, 2018; Carroll et al, 2022; Cortez et al, 2021; Fleskes et al, 2022; Wagner et al, 2020). Some of these motivations include, but are not limited to, calls for transparency in research projects, accountability with the results obtained, and consent from the Indigenous or descendant communities culturally associated with the AHR, as well as an engagement with its stewardship, management and curation.…”

“…This approach acts to ensure that the priorities within local communities are considered by respecting the timing and processes of their decision‐making, even if that means a delay in the speed of research and publication time or an outright refusal to participate (e.g., Benjamin, 2016; Fleskes et al, 2022; Radin, 2018). Carroll et al (2022) have described some suggestions for doing this, such as the CARE Principles for Indigenous Data Governance (Collective benefit, Authority to control, Responsibility, and Ethics) in the context of the United States.…”

“…Therefore, our call is oriented towards journal reviewers, editorial boards, and funding agencies to consider changing their policies and demand research projects and publications based on truly grounded engagement between “benefited institutions” and “vulnerable peripheral contexts” or any other stakeholder. This goal could be achieved by requiring the implementation of the well‐established principles published by stakeholders in the literature (e.g., Ávila‐Arcos et al, 2022; Carroll et al, 2022; Claw et al, 2018; Fleskes et al, 2022; Wagner et al, 2020). This implementation should not rely on the goodwill of researchers or ethical review boards; instead, this community‐based framework should be updated as a minimum ethical and funding standard for pushing aDNA research in a new direction.…”