Indigenous Research Ethics Requirements: An Examination of Six Tribal Institutional Review Board Applications and Processes in the United States

Kuhn, Nicole; Parker, Myra; Lefthand-Begay, Clarita

doi:10.1177/1556264620912103

Cited by 20 publications

(13 citation statements)

References 29 publications

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“…This research, therefore, only represents a small part of Taiwanese indigenous community. Second, due to ethical consideration, strict regulations and guidelines of seeking consent for research with indigenous populations and the communities they lived in,[38][39][40] the voices of the indigenous people and health care professionals delivering the integrated services are absent. We tried to minimise this limitation with the help of the CHAT framework and to carefully interpret residents' feedback from the medical students' qualitative data.…”

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confidence: 99%

Responding to change in a medical student rural community service: Insights from activity theory

Nisbet

Chang

2022

Medical Education

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Introduction Medical students have voluntarily initiated service‐learning programmes with the aim of providing assistance to medically underserved communities, especially within remote indigenous villages. However, their values and goals have been challenged because rural health care demands have changed considerably since the introduction of integrated delivery system (IDS) programmes, that is, programmes that integrate local health care providers with outreach services provided by contracted hospitals. Our study aimed to explore how a health care service‐learning group negotiates its position and how it responds to the tension of IDS implementation and changes in rural health care demand. Methods Medical students who have been engaged in building or operating the health care service‐learning group of one university in Taiwan were invited to participate in the study. We used cultural–historical activity theory (CHAT) to help us interpret the interactions between students, indigenous communities and the public health sectors and to understand the evolution of the service‐learning relationship and its effectiveness. Results Eighteen participants were recruited for in‐depth interviews. The implementation of IDS programmes brought change to the rural community and challenges to students' service learning. Utilising cultural–historical activity theory, we highlighted points of fragmentation within the system. This tension lead to medical students' personal conflict and also served as an impetus for change and learning. Flexible goal setting and coping ability were considered critical to the sustainability and maintenance of students' value systems. Conclusions IDS implementation can upset the balance of rural health care supply and demand, resulting in accumulating tensions within and between activity systems. Those contradictions exposed medical students to an expansive learning cycle, resulting in transformational change and learning. Under the context of IDS programmes, health care service‐learning can create a ‘win‐win’ situation. Not merely medical students but also community residents gain benefits. This result may be extrapolated to health care service‐learning programmes with similar context.

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confidence: 99%

Responding to change in a medical student rural community service: Insights from activity theory

Nisbet

Chang

2022

Medical Education

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“…It seems largely agreed upon that both individual and collective consents are required and that upholding tribal sovereignty is critical and to be respected. Tribal IRBs, community review boards and similar bodies are often referenced as authorities to which researchers must apply to receive collective consent, though some authors note that this may vary among tribes, and researchers must take time and care to understand which individuals and authorities they must consult with before beginning their studies [35].…”

Section: Resultsmentioning

confidence: 99%

Informed Consent in the U.S. Indigenous Peoples Context: A Systematic Literature Review 

Gross

Lefthand-Begay

2021

Preprint

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BACKGROUND: Tribal communities in the United States (U.S.) have a long history of subjection to unethical and exploitive medical and research practices. Today, many Tribal nations are establishing procedures in order to protect themselves from further harm and to advance culturally informed research practices. These procedures are also meant to ensure that their communities benefit from research conducted within their communities. Informed consent is a key element in protecting human subjects, but it may not be sufficient in the tribal context, as its conception is rooted in Western understandings of protection. Specifically, the informed consent emphasizes the individual, rather than the community as a whole, which is just as important in the context of conducting research with Native communities.METHODS: We conduct a systematic literature review to answer two related questions: How is informed consent being conceived of by U.S. tribes? And how is informed consent being required by U.S. tribes? Our inclusion criteria include articles focusing on informed consent within the U.S. tribal context, written in English in 2010-2020. Articles that did not fit our inclusion criteria were excluded. Two reviewers independently reviewed and coded 30 peer-reviewed articles by using content analysis and, in an iterative process, agreed on emerging codes and themes. RESULTS: A number of themes arise in the selected literature, including the conception of informed consent as a process, its operation at various levels (individual, collective, and government-to-government), possible alternatives to informed consent, and the need for specificity about ownership of samples and data, benefits and/or risks, and the methods and procedures that researchers use in the course of study.CONCLUSIONS: Our key results point to a need for clear and transparent information for prospective research participants and for consent forms and processes to include the collective, as well as the individual. This will better align with the cultural values and political standing of sovereign tribes in the U.S.

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“…This movement of tribal sovereignty over researchspecifically the role of tribal councils or tribally-run research review boards-is the second item that must be considered when restarting recruitment of participants during the COVID-19 pandemic. Many tribes have their own institutional review boards (IRBs) that review any projects prior to implementation on tribal reservation lands (Kuhn et al, 2020). This tribal oversight might be at the tribal nation level (e.g.…”

Section: Impact On Public Health Programs: Returning To In-personmentioning

confidence: 99%

Adaptations of an RCT during COVID: Case Study in one Rural American Indian Community

Hanson

Oziel

Harris

et al. 2022

Collaborations: A Journal of Community-Based Research and Practice

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The COVID-19 pandemic is global in nature but especially threatens American Indian and Alaska Native (AI/AN) communities due to pre-existing conditions and social determinants of health. Because of the higher risk to AI/AN communities, many tribal nations have been proactive in their policies to keep the virus at bay, including travel restrictions and lockdowns. This affected tribal programs as well as collaborative research projects. One project impacted is the Native CHOICES project, an ongoing randomized controlled trial with an AI/AN community that is focused on the prevention of alcohol-exposed pregnancies. Originally designed to be conducted via in-person motivational interviewing sessions, COVID-19 restrictions precluded the intervention from being delivered in-person as it was designed. The study team received valuable input from the project's Community Advisory Board (CAB) and community-based staff to establish a feasible and acceptable way of conducting the intervention while respecting tribally-enacted COVID-19 restrictions. The goal of this brief report is to outline not just the process to adapting to COVID-19 but also to provide recommendations for future public health programs, including the ongoing need to consider gaps in access affecting resource-poor settings.

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Indigenous Research Ethics Requirements: An Examination of Six Tribal Institutional Review Board Applications and Processes in the United States

Cited by 20 publications

References 29 publications

Responding to change in a medical student rural community service: Insights from activity theory

Responding to change in a medical student rural community service: Insights from activity theory

Informed Consent in the U.S. Indigenous Peoples Context: A Systematic Literature Review

Adaptations of an RCT during COVID: Case Study in one Rural American Indian Community

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Indigenous Research Ethics Requirements: An Examination of Six Tribal Institutional Review Board Applications and Processes in the United States

Cited by 20 publications

References 29 publications

Responding to change in a medical student rural community service: Insights from activity theory

Responding to change in a medical student rural community service: Insights from activity theory

Informed Consent in the U.S.&nbsp;Indigenous Peoples Context: A Systematic Literature Review&nbsp;

Adaptations of an RCT during COVID: Case Study in one Rural American Indian Community

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Informed Consent in the U.S. Indigenous Peoples Context: A Systematic Literature Review