Abstract
Recent initiatives by organizations such as the Southcentral Foundation (SCF) have investigated implementing genetic testing in primary care for the Alaska Native and American Indian (ANAI) people. There is little research however, examining the utility of genetic testing and the quality and effectiveness of the genetic counseling they receive. This study used a genetic counseling lens to analyze data from a public deliberation carried out in 2019 with 19 ANAI community members. Content analysis was used to review the transcripts from two days of discussion to identify themes related to views and preferences of community members regarding genetic testing and return of results to customer-owners. Three categories emerged from this analysis: previous experiences with healthcare, considerations regarding genetic testing, and the informed consent process, each with a number of individual themes. Based on our findings, we offer recommendations for genetic counselors and other healthcare professionals to consider when providing genetic counseling for ANAI people. Providers must; (1) know about and acknowledge the negative experiences that have led to the distrust felt by the community, (2) clearly communicate that clinical genetic testing is optional and does not look at ancestry, and (3) be aware of privacy and security concerns, as expressed during the deliberation, and create a robust informed consent process. Integration of this information will allow healthcare providers to provide culturally responsive care to individuals of the ANAI community.