Project

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The Navajo Nation is re-examining its current moratorium on genetic research studies and may adopt a policy to permit certain types of genetic research on tribal lands. With our collaborator, Dr. Nanibaa’ Garrison, our aim is to assess Navajo community members’ perspectives on genetic research during this critical moment. In addition, we are supporting projects that increase genetic literacy on the Navajo Nation to ensure that community discussions are informed and that policy development is ethically, culturally and socially appropriate.

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Additional Information

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The Navajo people experience more health disparities compared to the general population, some of which can be attributed to genetic diseases and conditions. However, many Navajo people are hesitant to participate in genetic research studies due to the moratorium on the Navajo Nation, as well as mistrust and limited knowledge about research and its potential implications. The first phase of this project provides preliminary background information and empirical data relevant to the development of a genetic research policy on the Navajo Nation and community perspectives on genetic research. Navajo community members’ perspectives on factors informing participation in genetic research were gathered through interviews, surveys, and deliberations with Navajo community members.

The second phase of the project uses information from the interviews and surveys to develop and test the effectiveness of culturally centered resources aimed at increasing genetics knowledge and health literacy. Initiatives include creating a genetic glossary of terminology in the Navajo language, developing digital stories for the Navajo community regarding various genetic educational topics, and creating a cultural framework for genomic research.

Overall, the project strives to incorporates feedback and include cultural experts, medical professionals, and other community stakeholders to assess the ethical, cultural, and social implications of genetic research, and we work closely with tribal leadership to inform them of the latest research findings.

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Future Directions

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We continue to analyze data and present our research to the Navajo community at various events. We plan to organize a Navajo genetics conference to update researchers and Tribal members on the current issues and continued publication of our research