Skip to main page content
U.S. flag

An official website of the United States government

Dot gov

The .gov means it’s official.
Federal government websites often end in .gov or .mil. Before sharing sensitive information, make sure you’re on a federal government site.

Https

The site is secure.
The https:// ensures that you are connecting to the official website and that any information you provide is encrypted and transmitted securely.

Access keys NCBI Homepage MyNCBI Homepage Main Content Main Navigation
. 2012 Jan;120(1):6-10.
doi: 10.1289/ehp.1103904. Epub 2011 Sep 2.

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

Anna Harding  1 , Barbara Harper, Dave Stone, Catherine O'Neill, Patricia Berger, Stuart Harris, Jamie Donatuto
Affiliations

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

Anna Harding et al. Environ Health Perspect. 2012 Jan.

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.

PubMed Disclaimer

Conflict of interest statement

The content is solely the responsibility of the authors and does not necessarily represent the official views of NIEHS or the National Institutes of Health.

B.H. and S.H. are employed by the Department of Science and Engineering, Confederated Tribes of the Umatilla Indian Reservation (Pendleton, OR). J.D. is employed by the Swinomish Indian Tribal Community, Office of Planning and Community Development (La Conner, WA). The other authors declare they have no actual or potential competing financial interests.

References

    1. Alaska Native Knowledge Network. Guidelines for Respecting Cultural Knowledge. Fairbanks:University of Alaska Fairbanks, Alaska Native Knowledge Network. 2000. Available: http://www.ankn.uaf.edu/Publications/Knowledge.html [accessed 1 April 2010]
    1. American Anthropological Association. Code of Ethics of the American Anthropological Association. 1998. Available: http://www.aaanet.org/committees/ethics/ethcode.htm [accessed 15 March 2011]
    1. American Indian Law Center, Inc. Model Tribal Research Code. 3rd ed. Albuquerque, NM:American Indian Law Center, Inc. 1999. Available: http://www.ihs.gov/Research/pdf/mdl-code.pdf [accessed 17 November 2011]
    1. Australian Institute of Aboriginal and Torres Strait Islander Studies. Guidelines for Ethical Research in Indigenous Studies. 1999. Available: http://www.aiatsis.gov.au/research/docs/ethics.pdf [accessed 21 March 2011]
    1. Beauchamp TL, Childress JF. 1994. Principles of Biomedical Ethics. 4th ed. New York:Oxford University Press.

Publication types

LinkOut - more resources