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ELSI Virtual Forum

Ethical Frameworks for Research Collaboration with Indigenous Communities


Research with Alaska Native and American Indian people has a complex history. American Indian and Alaska Native peoples, are both a racial classification and less known to most Americans, a political designation. American Indian and Alaska Native tribes are sovereign nations with an inherent right to self-determination, including determination of how and what kind of research will be conducted in their communities. Transgressions in the ethical conduct of research have ranged from failures to be inclusive and transparent, share research results and other benefits, or respect group and individuals’ rights and confidentiality to engaging in research that stigmatizes ANAI people and violates cultural values. Due to research harms that have occurred within genetic studies and health studies in general, many ANAI communities are understandably skeptical of participating in health research generally and genetic research specifically. As genetic research continues to advance, it has been suggested that there is an imperative to include ANAI communities to avoid widening health disparities. Panelists will discuss cultural and ethical frameworks for conducting research with Indigenous people and examples of community engaged genomic research with Alaska Native and American Indian people.

Speakers: Chief Lynn Malerba, DNP, MPA; Nanibaa’ Garrison, PhD; Katrina Claw, PhD
Moderator: Vanessa Hiratsuka, PhD

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