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Conducting Research with Tribal Communities: Sovereignty, Ethics, and Data-Sharing Issues

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dc.creator Harding, Anna
dc.creator Harper, Barbara
dc.creator Stone, Dave
dc.creator O'Neill, Catherine
dc.creator Berger, Patricia
dc.creator Harris, Stuart
dc.creator Donatuto, Jamie
dc.date.accessioned 2012-06-25T19:25:35Z
dc.date.available 2012-06-25T19:25:35Z
dc.date.issued 2012-01
dc.identifier.citation Harding, A., Harper, B., Stone, D., O'Neill, C., Berger, P., Harris, S., & Donatuto, J. (2012, January). Conducting research with tribal communities: Sovereignty, ethics, and data-sharing issues. Environmental Health Perspectives, 120(1), 6-10. doi:10.1289/ehp.1103904 en_US
dc.identifier.uri http://hdl.handle.net/1957/30157
dc.description This is the publisher’s final pdf. The published article is copyrighted by National Institute of Environmental Health Sciences and can be found at: http://www.ncbi.nlm.nih.gov/pmc/journals/253/. en_US
dc.description.abstract Background: 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. Objectives: 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. Discussion: 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. Conclusions: 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. en_US
dc.description.sponsorship Support for this research was provided by the National Institute of Environmental Health Sciences (NIEHS; award P42ES016465). en_US
dc.language.iso en_US en_US
dc.publisher National Institute of Environmental Health Sciences en_US
dc.relation.ispartofseries Environmental Health Perspectives en_US
dc.relation.ispartofseries Vol. 120 no. 1 en_US
dc.subject American Indian en_US
dc.subject data sharing en_US
dc.subject informed consent en_US
dc.subject intellectual property en_US
dc.subject IRB en_US
dc.subject research ethics en_US
dc.subject sovereignty en_US
dc.subject tribal en_US
dc.title Conducting Research with Tribal Communities: Sovereignty, Ethics, and Data-Sharing Issues en_US
dc.type Article en_US
dc.identifier.doi 10.1289/ehp.1103904

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