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Conducting research with tribal communities: sovereignty, ethics, and data-sharing issues.

ABSTRACT: When conducting research with American Indian tribes, informed consent beyond conventional institutional review board (IRB) review is needed because of the potential for adverse consequences at a community or governmental level that are unrecognized by academic researchers.In this article, we review sovereignty, research ethics, and data-sharing considerations when doing community-based participatory health-related or natural-resource-related research with American Indian nations and present a model material and data-sharing agreement that meets tribal and university requirements.Only tribal nations themselves can identify potential adverse outcomes, and they can do this only if they understand the assumptions and methods of the proposed research. Tribes must be truly equal partners in study design, data collection, interpretation, and publication. Advances in protection of intellectual property rights (IPR) are also applicable to IRB reviews, as are principles of sovereignty and indigenous rights, all of which affect data ownership and control.Academic researchers engaged in tribal projects should become familiar with all three areas: sovereignty, ethics and informed consent, and IPR. We recommend developing an agreement with tribal partners that reflects both health-related IRB and natural-resource-related IPR considerations.

SUBMITTER: Harding A

PROVIDER: S-EPMC3261947 | biostudies-literature | 2012 Jan

REPOSITORIES: biostudies-literature

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Conducting research with tribal communities: sovereignty, ethics, and data-sharing issues.

Harding Anna A Harper Barbara B Stone Dave D O'Neill Catherine C Berger Patricia P Harris Stuart S Donatuto Jamie J

Environmental health perspectives 20110902 1

<h4>Background</h4>When conducting research with American Indian tribes, informed consent beyond conventional institutional review board (IRB) review is needed because of the potential for adverse consequences at a community or governmental level that are unrecognized by academic researchers.<h4>Objectives</h4>In this article, we review sovereignty, research ethics, and data-sharing considerations when doing community-based participatory health-related or natural-resource-related research with A ...[more]

PMID: 21890450

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Project description:BackgroundAmerican Indians/Alaska Natives have the highest commercial tobacco use in the United States, resulting in higher tobacco-caused deaths and diseases than the general population. Some American Indians/Alaska Natives use commercial tobacco for ceremonial as well as recreational uses. Because federally recognized Tribal lands are sovereign, they are not subject to state cigarette taxes and smoke-free laws. This study analyzes tobacco industry promotional efforts specifically targeting American Indians/Alaska Natives and exploiting Tribal lands to understand appropriate policy responses in light of American Indians'/Alaska Natives' unique sovereign status and culture.MethodsWe analyzed previously secret tobacco industry documents available at the Truth Tobacco Documents Library (https://industrydocuments.library.ucsf.edu/tobacco/).ResultsTobacco companies used promotional strategies targeting American Indians/Alaska Natives and exploiting Tribal lands that leveraged the federally recognized Tribes' unique sovereign status exempting them from state cigarette taxes and smoke-free laws, and exploited some Tribes' existing traditional uses of ceremonial tobacco and poverty. Tactics included price reductions, coupons, giveaways, gaming promotions, charitable contributions, and sponsorships. In addition, tobacco companies built alliances with Tribal leaders to help improve their corporate image, advance ineffective Youth Smoking Prevention programs, and defeat tobacco control policies.ConclusionsThe industry's promotional tactics likely contribute to disparities in smoking prevalence and smoking-related diseases among American Indians//Alaska Natives. Proven policy interventions to address these disparities including tobacco price increases, cigarette taxes, comprehensive smoke-free laws, and industry denormalization campaigns to reduce smoking prevalence and smoking-related disease could be considered by Tribal communities. The sovereign status of federally recognized Tribes does not prevent them from adopting these measures.ImplicationsAmerican Indians/Alaska Natives suffer disparities in smoking prevalence and smoking-related diseases as compared with other groups. The tobacco industry has used promotional tactics including price reductions, coupons and giveaways, casino and bingo promotions, charitable contributions and sponsorships, and so-called Youth Smoking Prevention (YSP) programs to specifically target American Indians/Alaska Natives and exploit Tribal sovereignty, which likely contribute to disparities in tobacco use and related diseases and deaths among this population. Tribal and public health policy makers should consider rejecting ineffective YSP programs and instead consider adopting proven policy interventions including tobacco price increases, cigarette and casino taxes, comprehensive smokefree laws, and anti-industry denormalization campaigns to reduce smoking and smoking-related disease.

Project description:Background:Research around humanitarian crises, aid delivery, and the impact of these crises on health and well-being has expanded dramatically. Ethical issues around these topics have recently received more attention. We conducted a systematic literature review to synthesize the lessons learned regarding the ethics of research in humanitarian crises. Methods:We conducted a systematic review using the Preferred Reporting Items for Systematic Reviews and Meta-analysis (PRISMA) guidelines to identify articles regarding the ethics of research in humanitarian contexts between January 1, 1997 and September 1, 2019. We analyzed the articles to extract key themes and develop an agenda for future research. Results:We identified 52 articles that matched our inclusion criteria. We categorized the article data into five categories of analysis: 32 were expert statements, 18 were case studies, 11 contained original research, eight were literature reviews and three were book chapters. All included articles were published in English. Using a step-wise qualitative analysis, we identified 10 major themes that encompassed these concepts and points. These major themes were: ethics review process (21 articles, [40.38%]); community engagement (15 articles [28.85%]); the dual imperative, or necessity that research be both academically sound and policy driven, clinical trials in the humanitarian setting (13 articles for each, [25.0%)]; informed consent (10 articles [19.23%]); cultural considerations (6 articles, [11.54%]); risks to researchers (5 articles, [9.62%]); child participation (4 articles [7.69%]); and finally mental health, and data ownership (2 articles for each [3.85%]). Conclusions:Interest in the ethics of studying humanitarian crises has been dramatically increasing in recent years. While key concepts within all research settings such as beneficence, justice and respect for persons are crucially relevant, there are considerations unique to the humanitarian context. The particular vulnerabilities of conflict-affected populations, the contextual challenges of working in humanitarian settings, and the need for ensuring strong community engagement at all levels make this area of research particularly challenging. Humanitarian crises are prevalent throughout the globe, and studying them with the utmost ethical forethought is critical to maintaining sound research principles and ethical standards.

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Conducting research with tribal communities: sovereignty, ethics, and data-sharing issues.

Publications

Conducting research with tribal communities: sovereignty, ethics, and data-sharing issues.

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