Awareness and utilization of genetic testing among Hispanic and Latino adults living in the US: The Hispanic Community Health Study/Study of Latinos
Kurt D. Christensen,
Mengran Zhang,
Lauren N. Galbraith,
Einat Granot-Hershkovitz,
Sarah C. Nelson,
Sara Gonzalez,
Maria Argos,
Krista M. Perreira,
Martha L. Daviglus,
Carmen R. Isasi,
Jianwen Cai,
Gregory A. Talavera,
Carrie L. Blout Zawatsky,
Robert C. Green,
Rosario Isasi,
Robert Kaplan,
Tamar Sofer
Affiliations
Kurt D. Christensen
PRecisiOn Medicine Translational Research (PROMoTeR) Center, Department of Population Medicine, Harvard Pilgrim Health Care Institute, Boston, MA, USA; Broad Institute of Harvard and MIT, Cambridge, MA, USA; Department of Population Medicine, Harvard Medical School, Boston, MA, USA
Mengran Zhang
Division of Sleep and Circadian Disorders, Brigham and Women’s Hospital, Boston, MA 02115, USA
Lauren N. Galbraith
PRecisiOn Medicine Translational Research (PROMoTeR) Center, Department of Population Medicine, Harvard Pilgrim Health Care Institute, Boston, MA, USA; Departments of Epidemiology and Biostatistics, Boston University of Public Health, Boston, MA, USA
Einat Granot-Hershkovitz
Division of Sleep and Circadian Disorders, Brigham and Women’s Hospital, Boston, MA 02115, USA; Department of Medicine, Harvard Medical School, Boston, MA, USA
Sarah C. Nelson
Department of Biostatistics, University of Washington, Seattle, WA, USA
Sara Gonzalez
Department of Epidemiology and Population Health, Albert Einstein College of Medicine, Bronx, NY, USA
Maria Argos
School of Public Health, University of Illinois at Chicago, Chicago, IL, USA
Krista M. Perreira
Department of Social Medicine, University of North Carolina, School of Medicine, Chapel Hill, NC, USA
Martha L. Daviglus
Institute for Minority Health Research, University of Illinois at Chicago, Chicago, IL, USA; Feinberg School of Medicine, Northwestern University, Chicago, IL, USA
Carmen R. Isasi
Department of Epidemiology and Population Health, Albert Einstein College of Medicine, Bronx, NY, USA
Jianwen Cai
Collaborative Studies Coordinating Center, Department of Biostatistics, University of North Carolina at Chapel Hill, Chapel Hill, NC, USA
Gregory A. Talavera
South Bay Latino Research Center, Department of Psychology, San Diego State University, San Diego, CA, USA
Carrie L. Blout Zawatsky
Broad Institute of Harvard and MIT, Cambridge, MA, USA; Division of Genetics, Department of Medicine, Brigham and Women’s Hospital, Boston, MA, USA; MGH Institute of Health Professions, Boston, MA, USA; Ariadne Labs, Boston, MA, USA
Robert C. Green
Broad Institute of Harvard and MIT, Cambridge, MA, USA; Department of Medicine, Harvard Medical School, Boston, MA, USA; Division of Genetics, Department of Medicine, Brigham and Women’s Hospital, Boston, MA, USA; Ariadne Labs, Boston, MA, USA
Rosario Isasi
Department of Human Genetics, University of Miami Miller School of Medicine, Miami, FL, USA
Robert Kaplan
Department of Epidemiology and Population Health, Albert Einstein College of Medicine, Bronx, NY, USA; Public Health Sciences Division, Fred Hutchinson Cancer Research Center, Seattle, WA, USA
Tamar Sofer
Department of Medicine, Harvard Medical School, Boston, MA, USA; Division of Sleep and Circadian Disorders, Department of Medicine, Brigham and Women’s Hospital, 221 Longwood Avenue, Suite 225C, Boston, MA 02115, USA; Corresponding author
Summary: We investigated the awareness, perceived usefulness, and use of genetic testing among Hispanic and Latino individuals. Annual follow-up surveys for the Hispanic Community Health Study/Study of Latinos (HCHS/SOL) from 2019 to April 2020 assessed participants’ level of awareness and use of genetic tests to determine disease risks, likelihood of passing disease to children, disease treatment, or drug selection. They also were asked to rate the usefulness of the tests for managing a person’s health on a 1 (not at all useful) to 10 (extremely useful) scale. There were 5,769 HCHS/SOL participants who completed at least one survey question. Of the target population, 55.2% was aware of at least one type of genetic test. Awareness varied between HCHS/SOL enrollment sites and was higher among individuals who had higher educational attainment and had higher incomes. Only 3.3% of the target population reported receiving one or more of the tests described. HCHS/SOL individuals rated the usefulness as 8.4, on average, with lower scores observed among U.S.-born individuals compared to individuals born outside the United States, with differences by HCHS/SOL enrollment sites. In conclusion, while awareness of genetic testing among Hispanic and Latino individuals varies by location, education, and income, perceptions about its usefulness are high while experiences with testing are rare. Results identify groups and locations that may benefit from greater outreach about the capabilities of genetic testing and precision medicine.
