TY - JOUR
T1 - Awareness and utilization of genetic testing among Hispanic and Latino adults living in the US
T2 - The Hispanic Community Health Study/Study of Latinos
AU - Christensen, Kurt D.
AU - Zhang, Mengran
AU - Galbraith, Lauren N.
AU - Granot-Hershkovitz, Einat
AU - Nelson, Sarah C.
AU - Gonzalez, Sara
AU - Argos, Maria
AU - Perreira, Krista M.
AU - Daviglus, Martha L.
AU - Isasi, Carmen R.
AU - Cai, Jianwen
AU - Talavera, Gregory A.
AU - Blout Zawatsky, Carrie L.
AU - Green, Robert C.
AU - Isasi, Rosario
AU - Kaplan, Robert
AU - Sofer, Tamar
N1 - Funding Information:
The authors thank the staff and participants of HCHS/SOL for their important contributions. The investigators website is: http://www.cscc.unc.edu/hchs/ . The authors acknowledge the valuable contributions of Dr. Gerardo Heiss, a pillar of the community, a PI of the HCHS/SOL, and a contributor to this study. Dr. Heiss passed away in June 2022. The Hispanic Community Health Study/Study of Latinos is a collaborative study supported by contracts from the National Heart, Lung, and Blood Institute (NHLBI) to the University of North Carolina ( HHSN268201300001I / N01-HC-65233 ), University of Miami ( HHSN268201300004I / N01-HC-65234 ), Albert Einstein College of Medicine ( HHSN268201300002I / N01-HC-65235 ), University of Illinois at Chicago ( HHSN268201300003I / N01-HC-65236 Northwestern University), and San Diego State University ( HHSN268201300005I / N01-HC-65237 ). The following institutes, centers, and offices have contributed to the HCHS / SOL through a transfer of funds to the NHLBI: National Institute on Minority Health and Health Disparities , National Institute on Deafness and Other Communication Disorders , National Institute of Dental and Craniofacial Research , National Institute of Diabetes and Digestive and Kidney Diseases , National Institute of Neurological Disorders and Stroke , and the NIH Institution-Office of Dietary Supplements. K.D.C. was supported by NIH grant K01-HG009173 .
Funding Information:
K.D.C. was supported by a research grant from Sanford Health. R.C.G. has received compensation for advising the following companies: AIA, Embryome, Genome Web, Genomic Life, Grail, Humanity, OptumLabs, Plumcare, Verily; and is co-founder of Genome Medical, Inc. All other authors declare no competing interests.
Funding Information:
The authors thank the staff and participants of HCHS/SOL for their important contributions. The investigators website is: http://www.cscc.unc.edu/hchs/. The authors acknowledge the valuable contributions of Dr. Gerardo Heiss, a pillar of the community, a PI of the HCHS/SOL, and a contributor to this study. Dr. Heiss passed away in June 2022. The Hispanic Community Health Study/Study of Latinos is a collaborative study supported by contracts from the National Heart, Lung, and Blood Institute (NHLBI) to the University of North Carolina (HHSN268201300001I/N01-HC-65233), University of Miami (HHSN268201300004I/N01-HC-65234), Albert Einstein College of Medicine (HHSN268201300002I/N01-HC-65235), University of Illinois at Chicago (HHSN268201300003I/N01-HC-65236 Northwestern University), and San Diego State University (HHSN268201300005I/N01-HC-65237). The following institutes, centers, and offices have contributed to the HCHS/SOL through a transfer of funds to the NHLBI: National Institute on Minority Health and Health Disparities, National Institute on Deafness and Other Communication Disorders, National Institute of Dental and Craniofacial Research, National Institute of Diabetes and Digestive and Kidney Diseases, National Institute of Neurological Disorders and Stroke, and the NIH Institution-Office of Dietary Supplements. K.D.C. was supported by NIH grant K01-HG009173. Conceptualization: K.D.C. L.N.G. C.L.B.Z. and T.S.; data curation: M.Z. and T.S.; formal analysis: M.Z. and T.S.; funding acquisition: R.I. R.K. T.S. C.I. and M.L.D.; investigation: R.I. and R.K.; methodology: K.D.C. C.L.B.Z, R.I. R.K. and T.S.; project administration: resources: R.C.G. R.I. R.K. and T.S.; supervision: R.I. R.K. and T.S.; validation: T.S.; visualization: M.G. and T.S.; writing – original draft: K.D.C. L.N.G. M.Z. and T.S.; writing – review and editing: K.D.C. L.N.G. K.P. T.S. C.L.B.Z, M.A. C.I. M.L.D. G.A.T. and G.H. K.D.C. was supported by a research grant from Sanford Health. R.C.G. has received compensation for advising the following companies: AIA, Embryome, Genome Web, Genomic Life, Grail, Humanity, OptumLabs, Plumcare, Verily; and is co-founder of Genome Medical, Inc. All other authors declare no competing interests.
Publisher Copyright:
© 2022 The Author(s)
PY - 2023/1/12
Y1 - 2023/1/12
N2 - 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.
AB - 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.
KW - Hispanic or Latino
KW - awareness
KW - genetic testing, ELSI
KW - perceived usefulness
KW - population-based study
KW - survey
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U2 - 10.1016/j.xhgg.2022.100160
DO - 10.1016/j.xhgg.2022.100160
M3 - Article
AN - SCOPUS:85143519255
SN - 2666-2477
VL - 4
JO - Human Genetics and Genomics Advances
JF - Human Genetics and Genomics Advances
IS - 1
M1 - 100160
ER -