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

ABSTRACT: 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, r

SUBMITTER: Kohler JN 

PROVIDER: S-EPMC11305122 | biostudies-literature | 2022 Apr

REPOSITORIES: biostudies-literature