Virtual deliberation on genetics research: report-out of key themes from Diné (Navajo) research & healthcare professionals

Various challenges including cultural concerns, the shortage of Diné (Navajo) scientists and scientists with cultural competence to engage with Diné communities, and the need for rigorous policies regarding genetic research led to the establishment of a moratorium on genetic research within the Navajo Nation in 2002. Previous surveys with Diné interest holders highlighted ongoing uncertainty about lifting the moratorium and underscored the need for further community consultation and education. Deliberative democratic engagement has been an effective approach for exploring Indigenous community values regarding genomic research. To assess perspectives on genetic research and inform future policy, we conducted a two-day virtual deliberation with 17 research and healthcare professionals associated with the Navajo Nation, including Diné (n = 15) and non-Diné (n = 2) deliberants. Deliberants varied in their knowledge of genetics (n = 5 reported knowing "a lot"; n = 12 "a little bit"), and a majority (n = 13) were aware of the moratorium. Two overarching themes, "life and history experiences" and "values," emerged, reflecting how personal and professional backgrounds, alongside individual and collective standards, shaped deliberants' views on genetic research and its practices. Subthemes within these categories offered deeper insights into their perspectives. Although deliberants expressed caution regarding exploratory genetic studies, there was interest in using genetic research to advance individualized healthcare. Deliberants' concerns emphasized the need for a robust genetic research policy that prioritizes Diné culture, community interests, public health and wellbeing, and the sovereignty of the Navajo Nation.