Abstract
Over the past decade, the field of genetic counseling has become increasingly aware of the need for culturally informed genetic counseling for individuals from different cultures and ethnicities. However, there is very little information available regarding genetic counseling with North American Natives. The purpose of this study was to gather information about genetics professionals’ experiences regarding their genetic counseling sessions with Alaskan and Canadian Native clients. We recruited study participants via the NSGC listserv. We then conducted audiotaped phone interviews with twelve genetic counselors/nurses that work in Alaska or Canada and have experience counseling Northern Native individuals. Following transcription of the qualitative interviews, we used ATLAS.ti software to identify common themes among interviews. Respondents reported that their Native clients value their culture, families and rural communities. In terms of communication, they described their clients as reserved and quiet. Respondents also noted that, during sessions, it was hard to elicit factual and emotional reactions from Native clients. They saw cultural differences and their clients’ perspective on genetics and medicine as underlying reasons for these communication challenges. Native clients were reported to be more accepting of (certain familiar) genetic diagnoses, but may have alternative explanations for diseases or be more worried about logistical (or other) issues, rather than genetic explanations. The remoteness of many Native villages and reserves is a challenge for clients and counselors: Native individuals are often intimidated by large cities and travel, while counselors/nurses struggle with the coordination of care and shipment of medical supplies. Study participants suggested strategies for improvement of services, such as taking time during sessions and establishing health care teams that provide care for remote communities. They also stressed the importance of learning from Native individuals about Native culture and perspective on medicine as a way to improve services for this clientele.