226901 Improving our health legacy: The Indian Walk-In Center inherited health project

Monday, November 8, 2010

Ed Napia , Indian Walk-In Center, Salt Lake City, UT
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.

Learning Areas:
Assessment of individual and community needs for health education
Implementation of health education strategies, interventions and programs

Learning Objectives:
Discuss areas for special consideration in engaging native communities in conversations about genetics and health. Describe the response of native communities to discussions about inherited health and chronic diseases, as well as genetics-related research. Discuss the factors facilitating successful collaboration within and among diverse community groups and a University-based education program.

Keywords: Community-Based Partnership, Genetics

Presenting author's disclosure statement:

Qualified on the content I am responsible for because: I am qualified to present because I am the Special Projects Coordinator at the Indian Walk-In Center. I planned and am conducting the Center’s inherited health project.
Any relevant financial relationships? No

I agree to comply with the American Public Health Association Conflict of Interest and Commercial Support Guidelines, and to disclose to the participants any off-label or experimental uses of a commercial product or service discussed in my presentation.