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IRBs and researchers must recognize that “the truth comes from many places” if they want to work in good faith with Native American tribes.
So says a code of research ethics and integrity developed by the National Congress of American Indians and the Indigenous Wellness Research Institute at the University of Washington.1 The full document and the rest of the curriculum is available for download at: http://bit.ly/2FWgvdj. Some of the ethics code key points are cited and summarized as follows.
“This Code of Ethics and Integrity recognizes that the tribe has the right of self-determination and, in exercising that right, must be recognized as the exclusive owner of indigenous traditional and cultural knowledge,” the document states. “Research should be beneficial, community-based, culturally relevant, and consistent with tribe health priorities and concerns, and the risks associated with the research should be less significant than the benefits to be gained.”
To avoid misunderstanding and harm, the tribe participating in research must:
• understand why the study is being carried out;
• understand objectives, methods, and potential results of the research;
• understand how the research will benefit their partnership and the field more broadly;
• understand if and how the research could potentially harm their partnership;
• understand that participation in the research is voluntary;
• know that they can refuse to participate in the research and still be entitled to benefit from tribe and research-related activities;
• be given the opportunity to be involved in all aspects of the research process;
• know that the research will respect the Code of Ethics and Integrity;
• have the ability to ask the researchers questions about the research at any time;
• contact the overall principal investigator if they have any concerns about an aspect of the research project.
• our voices will influence work to promote our continued collaboration;
• increasing capacity of our partnership within and outside our tribal community;
• research analyses, interpretations, and results must be presented to and discussed by all partners to ensure accuracy and avoid misunderstanding; mutual commitment to excellence and rigorous science;
• integrity of indigenous knowledge and wisdom in all communities;
• research must ensure confidentiality and anonymity of individuals, organizations, and communities unless these parties choose to be named in the results.
1. University of Washington. Research Ethics Training for Health in Indigenous Communities. Available at: http://bit.ly/2FWgvdj.
Financial Disclosure: Author Melinda Young, Medical Writer Gary Evans, Editor Jill Drachenberg, Editor Jesse Saffron, Editorial Group Manager Terrey L. Hatcher, Physician Editor Lindsay McNair, MD, MPH, MSBioethics, and Nurse Planner Kay Ball, PhD, RN, CNOR, CMLSO, FAAN, report no consultant, stockholder, speaker’s bureau, research, or other financial relationships with companies having ties to this field of study.