UC Irvine

Provider-patient ethno-racial concordance describes when a patient is seen by a provider from a similar ethno-racial or cultural background, and can include native language concordance, in which a patient is seen by a provider who can speak their native language. Benefits include improvements to both patients’ healthcare outcomes and their perceptions of their care. However, given that 87% of genetic counselors (GCs) are White, many patients do not have access to a concordant GC. The study assessed public attitudes, understanding, and misconceptions of genetics, medical genetics, and genetic counseling through an online survey. Educational videos (intervention), presented by genetics providers and trainees in English, Spanish and Vietnamese, provided education on these genetics topics and compared post-intervention knowledge and attitudes among randomized participants who watched the video from concordant vs. non-concordant providers. Participant groups included Hispanic/Latino (n=28), Asian (n=60), and African American (n=42); 68% had College/Graduate education, and for 36%, their preferred language was Vietnamese or Spanish. 41% (n=53) of participants viewed counseling as beneficial but unaffordable (p=0.005). Four common misconceptions were detected across all groups pre-intervention: 1) Medical information received from an at-home DNA or ancestry kit (such as ancestry.com, 23andme, or similar) is the same as results from a clinical genetic test ordered by a GC; 2) When a genetic condition is found in a fetus, a GC will recommend an abortion (or termination of the pregnancy); 3) GCs help people choose desirable traits for their future children such as height, hair color, and intelligence; and 4) GCs can change a person’s genetic makeup. Statements three and four remained misconceptions post-intervention. Two negative attitudes were expressed: fear of receiving a genetic diagnosis for oneself or a child and the belief that genetic counseling was not affordable. Attitudes about cost improved post-intervention, but attitudes about fear remained. A significant finding across all language and ethno-racial groups was participants’ preference for concordant providers who share those backgrounds, 72% (n=63) and 89% (n=78), respectively. Concordant provider videos positively correlated with improved understanding of genetic counseling in six out of seven statements related to at-home DNA kit results versus clinical genetic tests, availability of GC for those planning to become pregnant, genetic test results aiding in choosing appropriate treatment for illnesses like cancer, GC recommending abortion for genetic conditions found in a fetus, seeing a GC without a family history of genetic conditions, and benefits of GC for adopted individuals or those with limited family information. These results indicate that the benefits of concordance in provider videos were observed even in the absence of direct interaction. Future research should focus on developing culturally and linguistically tailored educational materials and exploring optimal recruitment strategies to improve genomic literacy among underrepresented populations.