Navajo Genetic Toolkit: A Culturally Tailored Guide for Engagement and Oversight of Genetic Research

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PROJECT SUMMARY/ABSTRACT The Navajo Nation is currently re-examining a moratorium on genetic research studies to adopt a policy to permit certain types of genetic research. Navajo people suffer disproportionately from high rates of genetic diseases and disorders and experience more health disparities compared to the general population. Due in part to underrepresentation in genetic research studies, there has been limited research on genetic diseases and disorders, treatment, and prevention. There is a need for culturally-tailored guidance for Navajo people and policy makers to understand, assess, and evaluate proposed genetic research with the Navajo community. The proposed project will develop and test the effectiveness of multiple resources aimed at increasing genetics knowledge and ways to assess proposed genetic studies. First, we will develop a genetic toolkit and glossary of terminology to enhance the ways in which Navajo people and Navajo Nation Human Research Review Board (NNHRRB) assess genetic research along with tools to discuss and understand the concepts. Second, we will create digital content for the Navajo community regarding genetic research protocols and education, thereby strengthening the evaluation and assessment of appropriate genetic research while integrating cultural considerations. Third, we will develop a framework to orient concepts about genetics based on fundamentals of Navajo culture and philosophy to engage traditional people and the community on genetic research. Finally, we will host a conference to engage the larger Navajo community in all of the tools that we develop and in deeper discussions about genetics. The project will solicit specific feedback from cultural experts as well as medical professionals to articulate salient ethical, cultural, and social implications of genetic research in the development of materials to support broader public discussions about the risks and benefits of genetic research in the Navajo Nation. The overall goal of this project is to develop tools to improve how Navajo people converse about genetics, thus allowing for more discussions that could strengthen knowledge and robust guidance for assessing genetic research protocols. We hypothesize that culturally-informed tools will increase uptake in how people use materials, thus increasing public understanding about genetics and empowering individuals to engage in meaningful discussions about genetics and research participation. The unique features of this work are the incorporation of Navajo understandings of genetics as well as extensive community input and community- engaged research. The lead investigators and vast majority of the research team are enrolled members of the Navajo tribe. This work can foster the Navajo Nation in discussions about genetics and these tools may be adapted by other tribes, thus having potential significant impact on the rest of Indian Country.