Background: Understanding awareness and perceptions of genetic counseling (GC) among different groups is important in order to identify and overcome potential barriers to GC services. However, there are relatively little empirical data regarding awareness and perceptions of GC among US-based populations.
Methods: To address this gap within the state of California, we attended community events for the general public, disability community, and new parents, and recruited people to participate in a survey-based study comprising demographic questions, closed-ended knowledge-based and awareness questions, and open text sections. We applied descriptive statistics to responses about: demographics, whether the individual had heard of GC, and perceptions of what a genetic counselor does. Open text responses to a question about participants’ first associations with the phrase “genetic counseling” were analyzed for themes. Responses to 18 items about the possible purposes of GC were used to generate a total “knowledge score”.
Results: In total, 320 people participated, including 69 from the general public, 209 from the disability community, and 42 from a new parent community. Slightly more than half of all respondents (n =173, 54%) had heard of GC. Risk assessment and counseling were amongst the most frequently cited activities attributed to genetic counselors, but a small number felt that GC was related to eugenics. Many respondents thought that GC aims to prevent genetic diseases and abnormalities (n=82, 74%), help people find their ethnic origins and understand their ancestry (n=176, 55%), advise people about whether to have children (n=140, 44%), and help couples have children with desirable characteristics (n=126, 39%). The mean knowledge score was 12/18 for all groups combined, and scores were not significantly different between communities or any demographic groups.
Conclusions: These data reveal gaps in awareness of GC and misperceptions about its purpose. These data could be used to develop targeted interventions to improve awareness and dispel misconceptions.
This poster was presented at the 2015 National Society of Genetic Counselors Annual Education Conference is Pittsburgh, PA.