Informing the Navajo public about genetic research and policy

Project Summary Navajo people (the Diné) experience more health disparities compared to the general population and have higher prevalence of certain genetic diseases and disorders. There is limited research on disease, treatment, and prevention, and underrepresentation in genetic and genomic research studies remains a concern. The Navajo Nation’s Health and Human Services Committee (HHSC), representing the largest tribe in the southwestern U.S. with over 400,000 enrolled citizens, approved a moratorium in April 2002 “on genetic research studies conducted within the jurisdiction of the Navajo Nation until such time that a Navajo Nation Human Research Code has been amended by the Navajo Nation Council” after long consultations with tribal leaders, traditional healers, and Navajo people with medical and scientific training. An underlying concern was that the Navajo Nation lacked policies or guidelines for modern genetic research protocols that would prevent research harms. In recent years, the Navajo Nation has begun to reexamine the moratorium and several public discussions have taken place with Navajo people about emerging genetic and genomic technologies and its associated ethical dimensions, yet there has not been an opportunity to convene the wider Navajo public and other tribal nations to discuss the benefits and risks of genomic research (including emerging initiatives such as precision medicine). The proposed Navajo Genetics conference to be held in April 2025 will be timely as the Navajo Nation reconsiders the moratorium. Our main goal is to improve genetic literacy and knowledge of genetics and genomics on the Navajo Nation and within the larger Indigenous community, which is valuable and important for making future health decisions and advancing health research. We also strive to support Navajo tribal sovereignty by supporting ways that discussion and decision- making can be shared as a robust genetic research policy is created by the Navajo tribal leaders.