Research Ethics

Angal J, Peterson JM, Tobacco D, Elliott A. Ethics Review for a Multi-Site Project Involving Tribal Nations in the Northern Plains. Journal of Empirical Research on Human Research Ethics 2016, 11(2): 91-96.

Around Him D, Aguilar TA, Frederick A, et al. Tribal IRBs: A Framework for Understanding Research Oversight in American Indian and Alaska Native Communities. American Indian and Alaska Native Mental Health Research (Online) 2019, 26(2): 71-95.

Bakhireva LN, Nebeker C, Ossorio P, et al. Inclusion of American Indians and Alaskan Natives in Large National Studies: Ethical Considerations and Implications for Biospecimen Collection in the HEALthy Brain and Child Development Study. Adversity and Resilience Science 2020, 1:285-294.

Boyer BB, Dillard D, Woodahl E, et al. Ethical Issues in Developing Pharmacogenetic Research Partnerships American Indigenous Communities.  Clinical Pharmacology & Therapeutics 2011, 89(3): 343-345.

Claw KG, Lippert D, Bardill J, et al. Chaco Canyon Dig Unearths Ethical Concerns.  Human Biology 2017, 89(3): 177-180.  

Garrison N.  Genomic Justice for Native Americans: Impact of the Havasupai Case on Genetic Research. Science, Technology, & Human Values 2012, 38(2): 201-223.

Guedes C, Guimaraes S. Research Ethics and Indigenous Peoples: Repercussions of Returning Yanomami Blood Samples. Developing World Bioethics 2020, 20(4): 20-215.

Hindorff LA, Bonham VL, Brody LC, et al.  Prioritizing Diversity in Human Genomics Research. Nature Reviews Genetics 2017, 19(3): 175-185. 

Hiratsuka VY, Hahn MJ, Woodbury RB, et al. Alaska Native Genomic Research: Perspectives from Alaska Native Leaders, Federal Staff, and Biomedical Researchers. Genetics in Medicine 2020, 22(12): 1935-1943.  

Huckins C. For Marginalized Groups, Being Studied Can Be a Burden - Academics often research minority communities in the hope of helping them. But too much time under the microscope can cause its own harms, in Wired January 6, 2021.

James R, Tsosie R, Sahota P, et al. Exploring Pathways to Trust: A Tribal Perspective on Data Sharing. Genetics in Medicine 2014, 16:820-826.

James RD, West KM, Claw KG, et al. Responsible Research with Urban American Indians and Alaska Natives. American Journal of Public Health 2018, 108(12): 1613-1616.

Kelley A, Belcourt-Dittloff A, Belcourt C, Belcourt G. Research Ethics and Indigenous Communities. American Journal of Public Health 2013, 103(12):2146-2152.  

Lanzarotta T. Ethics in Retrospect: Biomedical R0esearch, Colonial Violence, and Iñupiat Sovereignty in the Alaskan Arctic. Social Studies of Science 2020, 50(5): 778-801.

Mashford-Pringle A, Pavagadhi K. Using OCAP and IQ as Frameworks to Address a History of Trauma in Indigenous Health Research. AMA Journal of Ethics 2020, 22(10): E868-873. 

Morton DJ, Proudfit J, Calac D, et al. Creating Research Capacity Through a Tribally Based Institutional Review Board. American Journal of Public Health 2013, 103(12): 2160-2164.

Office of Human Research Protections. Supporting Ethical Research Involving AI/AN Populations? August 26, 2021. Available are the archived video, slides, event summary report, and a list of resources.

Pacheco CM, Daley SM, Brown T, et al. Moving Forward: Breaking the Cycle of Mistrust Between American Indians and Researchers, American Journal of Public Health 2013, 103(12): 2152-2159. 10.2105/AJPH.2013.301480

Quigley D. A Review of Improved Ethical Practices in Environmental and Public Health Research: Case Examples from Native Communities. Health Education & Behavior 2006, 33(2): 130-147.

Sharp RR, Foster MW. Community Involvement in the Ethical Review of Genetic Research: Lessons from American Indian and Alaska Native Populations.  Environmental Health Perspectives 2002, 110 (Suppl 2):145-8.

Trinidad SB, Fullerton SM, Ludman EJ, et al. Research Practice and Participant Preferences: The Growing Gulf. Science 2011, 331(6015): 287-88.

Weijer C. Protecting Communities in Research: Philosophical and Pragmatic Challenges. Cambridge Quarterly of Healthcare Ethics 1999, 8: 501-513.

Weijer C, Emanual EJ. Protecting Communities in Biomedical Research. Science 2000, 289(5482): 1142-1144.

Winters, A. Trespass to Culture: The Bioethics of Indigenous Populations’ Informed Consent in Mainstream Genetic Research Paradigms. American Indian Law Review 2016, 41(1): 231-251.