Knowledge and perceptions of the genetic counseling profession among a national cross-sectional sample of U.S. adults.

Awareness of the genetic counseling (GC) profession may influence access to genetic services, yet awareness among the U.S. population is unknown. A survey of U.S. adults was conducted using age- and sex-based quotas. Participants were asked if they had heard of the GC profession and to describe what genetic counselors (GCs) do. After reading a brief description of what GCs do, participants were asked the likelihood they would request to see a genetic counselor if they were concerned about a genetic condition. We used descriptive statistics to characterize the population, logistic regression to determine factors related to awareness of the GC profession, and ordinary least squares regression to identify which factors correlated with likelihood of seeking GC services. Thematic analysis was used to code open-ended responses. Among the final sample of 543, the majority were White individuals (79.7%) with an average age of 46.5 and median income between $60,000 and $69,999. Although 20% indicated they had heard of the GC profession, further analysis of the qualitative follow-up question suggested only 13.4% understood the role of GCs (CI 10.6%-16.3%). Factors positively and significantly correlated with knowledge of the GC profession included identifying as White or female and having higher educational attainment or higher science knowledge after controlling for income, age, and political views. Approximately 45% of respondents indicated they would likely or very likely seek GC if concerned about a genetic condition. Biological sex, age, religious affiliation, science knowledge, and awareness of the GC profession were significantly correlated with likelihood of seeking GC services while controlling for race, income, educational attainment, and political views. Curiosity/interest, the perception of benefits, and trust in GCs were all major themes that emerged to explain reasons for seeking an appointment with GCs. Lack of awareness, lack of perceived benefit, and lack of trust in GCs or greater trust in other healthcare providers were reasons for not wanting a GC appointment. Despite the 50-year existence of the GC profession, awareness remains low and negative attitudes exist.