Cultural concerns and the lack of trained scientists and a rigorous policy for genetic research studies with the Navajo (Diné) people led to a moratorium on genetic research on the Navajo Nation in 2002. A recent survey of Diné stakeholders revealed a hesitancy to lift the moratorium and showed that further consultation at various community levels is needed. To assess community perspectives on genetic research and a future research policy, we hosted a 2-day virtual deliberation among Diné (n=15) and non-Navajo (n=2) healthcare professionals associated with the Navajo Nation (n=17). We applied thematic analysis with a hybrid of deductive and inductive approaches to a deliberation methodology, which engages diverse perspectives to explore a publicly relevant problem. Participants had varied knowledge of genetics (n=5 knew “a lot”; n=12 knew “a little bit"), and the majority had heard of the moratorium (n = 11/17). While participants expressed concern for exploratory genomic studies, there was interest in using genetic research to improve individualized healthcare. Participants’ concerns reveal the need for a genetics research policy that prioritizes Diné culture, interests, and sovereignty. These deliberations generated community recommendations to inform a potential policy for ethical genetic research on the Navajo Nation. Such research could contribute to equitable evidence-based healthcare.
Authors: Luke Nez, University of California, Los Angeles; Carissa Sherman, University of Colorado Anschutz Medical Campus; Erika Blacksher, University of Washington School of Medicine; Justin Reedy, University of Oklahoma; Jessica Blanchard, University of Oklahoma; Kaja Aagaard, University of Colorado Anschutz Medical Campus; Leah Nez, University of Colorado Anschutz Medical Campus; Justin Lund, Northern Arizona University; Julie Beans, Southcentral Foundation; Vanessa Hiratsuka, University of Alaska Anchorage; Nanibaa' Garrison, University of California, Los Angeles; Katrina Claw, University of Colorado Anschutz Medical Campus
