Improving our health legacy: The Indian Walk-In Center inherited health project

Genetic research is often not well received by American Indian/Alaska Native people, many of whom believe they have been over-researched and have not received any direct benefits from that research. The Indian Walk-In Center (IWIC), located in Salt Lake City, Utah, has as its mission to support and provide wellness and social life-way services, and to confirm family and community strengths with respect to culturally appropriate values and heritage of American Indians and Alaska Natives. To address issues related to genetics, the IWIC collaborated with the Genetic Science Learning Center (GLSC) at the University of Utah in the Community Dialogues About Genetics and Health project. We began this program with careful consideration, and have moved thoughtfully throughout the planning process. First, we replaced the term “genetics research” with “inherited health” so as to include dialogue about family practices as well as genetic inheritance in our discussions. Second, we determined that dialogue on genetic inheritance was best approached by discussions on chronic diseases that affect native populations, such as heart disease and diabetes; the biology of genetic inheritance would not appeal to most native people. Finally, but most importantly, we wanted to protect native beliefs regarding the collection of biological samples including use, ownership, and disposal of such samples and tribal sovereignty. To this presentation we bring the stories of our experiences with our native communities, of our successful collaboration with the GSLC staff, and of the sense of community created among the other communities working on this project.