ELSIcon2022 Paper: Awareness and Utilization of Genetic Testing among Hispanic/Latino Adults Living in the US: The Hispanic Community Health Study/Study of Latinos

ELSIcon2022 • Paper • May 27, 2022

Kurt D. Christensen, Mengran Zhang, Lauren Galbraith, Einat Granot-Hershkovitz, Sarah Nelson, Sara Gonzalez, Maria Argos, Krista Perreira, Martha Daviglus, Carmen Isasi, Heiss, Jianwen Cai, Gregory Talavera, Carrie Zawatsky, Robert Green, Rosario Isasi, Robert Kaplan, Tamar Sofer

Purpose: We investigated awareness and perceived utility of genetic testing among Hispanics/Latinos living in the U.S. 
Methods: The Hispanic Community Health Study / Study of Latinos (HCHS/SOL) is a multi-center longitudinal cohort study, designed to represent the diverse Hispanic/Latino population in the U.S. Participants were recruited from four urban areas: Bronx NY, Chicago IL, Miami FL, and San Diego CA. Annual follow-up surveys for the HCHS/SOL administered from April 2019- April 2020 assessed participants’ level of awareness and usage of genetic tests to determine disease risks, likelihood of passing risk to children, treatment, or drug selection. They also were asked to rate the usefulness of the tests “for managing a person’s health” on a 1-10 scale. 
Results: 5,769 HCHS/SOL participants (mean age 46 years; 64% women) completed at least one survey question, 55.2% of whom reported awareness of at least one type of genetic test. Awareness varied between HCHS/SOL enrollment sites and was higher among Hispanics/Latinos who had higher educational attainment and incomes. Only 3.3% of Hispanics/Latinos reported receiving one or more of the tests described. Hispanics/Latinos rated the usefulness as 8.4, on average, with lower scores observed among U.S.-born Hispanics/Latinos compared to Hispanics/Latinos born outside the U.S., differences by HCHS/SOL enrollment sites were also observed.
Conclusion: This survey suggests that awareness and uptake of genetic testing among Hispanics/Latinos remains relatively low, despite strong positive perceptions about their utility. Results highlight the need for greater outreach about the capabilities of genetic testing and precision medicine, and increased access to care.