Researcher attitudes toward hypothetical genetic research with Navajo people: Results from an online survey

The Navajo Nation is reevaluating a moratorium on genetic research that was authorized in 2002. While the moratorium was instituted due to cultural concerns and the lack of a Navajo genetic research policy, there remains limited empirical work assessing the perspectives of Diné (Navajo) people and other interest holders regarding genetic research. To address this gap, this study examines the perspectives of research project leaders with protocols approved by the Navajo Nation Human Research Review Board (NNHRRB) as this group is aware of research expectations and cultural considerations. An online survey was designed to gauge researchers' interest in adding a genetic component to their research if the moratorium were lifted, while also examining potential benefits, risks, and ethical considerations. Survey participants (n = 36) included 27% Diné researchers and 73% non-Diné researchers, and 50% of researchers (n = 18) had collected human biospecimens in their research (e.g., blood, tissue). Our results indicate that, if the moratorium on genetic research ended, 42% of researchers (n = 15) would be unsure about adding a genetic component to their projects, while 31% (n = 11) of researchers were interested. Participants were asked to rank ethical considerations related to five broad topics: community engagement; dissemination of results and data; privacy and rights; health, safety, and equity; and discrimination and mistrust. Participants ranked "ensure that no research participants are harmed" and "give presentations to the community" as very important, whereas "sharing data with other researchers" was of low importance. We provide valuable perspectives to guide potential genetic policy development for the Navajo Nation.