Genetic counselor roles in the undiagnosed diseases network research study: Clinical care, collaboration, and curation.

Genetic counselors (GCs) are increasingly filling important positions on research study teams, but there is limited literature describing the roles of GCs in these settings. GCs on the Undiagnosed Diseases Network (UDN) study team serve in a variety of roles across the research network and provide an opportunity to better understand genetic counselor roles in research. To quantitatively characterize the tasks regularly performed and professional fulfillment derived from these tasks, two surveys were administered to UDN GCs in a stepwise fashion. Responses from the first, free-response survey elicited the scope of tasks which informed development of a second structured, multiple-select survey. In survey 2, respondents were asked to select which roles they performed. Across 19 respondents, roles in survey 2 received a total of 947 selections averaging approximately 10 selections per role. When asked to indicate what roles they performed, respondent selected a mean of 50 roles (range 22-70). Survey 2 data were analyzed via thematic coding of responses and hierarchical cluster analysis to identify patterns in responses. From the thematic analysis, 20 non-overlapping codes emerged in seven categories: clinical interaction and care, communication, curation, leadership, participant management, research, and team management. Three themes emerged from the categories that represented the roles of GCs in the UDN: clinical care, collaboration, and curation. Cluster analyses showed that responses were more similar among individuals at the same institution than between institutions. This study highlights the ways GCs apply their unique skill set in the context of a clinical translational research network. Additionally, findings from this study reinforce the wide applicability of core skills that are part of genetic counseling training. Clinical literacy, genomics expertise and analysis, interpersonal, psychosocial and counseling skills, education, professional practice skills, and an understanding of research processes make genetic counselors well suited for such roles and poised to positively impact research experiences and outcomes for participants.

The Familial Socialization of Culturally Related Values in Mexican American Families.

Research has documented a relation between parents' ethnic socialization and youth's ethnic identity, yet there has been little research examining the transmission of cultural values from parents to their children through ethnic socialization and ethnic identity. This study examines a prospective model in which mothers' and fathers' Mexican American values and ethnic socialization efforts are linked to their children's ethnic identity and Mexican American values, in a sample of 750 families (including 467 two-parent families) from an ongoing longitudinal study of Mexican American families (Roosa, Liu, Torres, Gonzales, Knight, & Saenz, 2008). Findings indicated that the socialization of Mexican American values was primarily a function of mothers' Mexican American values and ethnic socialization, and that mothers' Mexican American values were longitudinally related to children's Mexican American values. Finally, these associations were consistent across gender and nativity groups.