TY - JOUR
T1 - Consent for Use of Genetic Data among US Hispanics/Latinos
T2 - Results from the Hispanic Community Health Study/ Study of Latinos
AU - Gonzalez, Sara
AU - Strizich, Garrett
AU - Isasi, Carmen R.
AU - Hua, Simin
AU - Comas, Betsy
AU - Sofer, Tamar
AU - Thyagarajan, Bharat
AU - Perreira, Krista M.
AU - Talavera, Gregory A.
AU - Daviglus, Martha L.
AU - Nelson, Sarah C.
AU - Giachello, Aida L.
AU - Schneiderman, Neil
AU - Kaplan, Robert C.
N1 - Publisher Copyright:
© 2021 Ethnicity and Disease, Inc.. All rights reserved.
PY - 2021
Y1 - 2021
N2 - Inclusion of historically underrepresented populations in biomedical research is critical for large precision medicine research initiatives. Among 13,721 Hispanic Community Health Study/Study of Latinos (HCHS/SOL) enrollees, we used multivariable-adjusted prevalence ratios to describe characteristics associated with participants' willingness to consent to different levels of biospecimen and genetic data analysis and sharing. At baseline (2008-2011), HCHS/SOL participants almost universally consented to the use of biospecimens and genetic data by study investigators and their collaborators (97.6%; 95%CI: 97.1, 98.0). Fewer consented to biospecimen and genetic data sharing with investigators not affiliated with the HCHS/SOL research team (81%, 95%CI: 80, 82) or any data sharing with commercial/for-profit entities (75%, 95%CI: 74, 76). Those refusing to share their data beyond the study investigators group were more often females, Spanish language-speakers and non-US born individuals. As expected, participants who were retained and reconsented at the six-year follow up visit tended to embrace broader data sharing, although this varied by group. Over time, Puerto Ricans and Dominicans were more likely to convert to broader data sharing than individuals of a Mexican background. Our analysis suggests that acculturation and immigration status of specific Hispanic/Latino communities may influence decisions about participation in genomic research projects and biobanks.
AB - Inclusion of historically underrepresented populations in biomedical research is critical for large precision medicine research initiatives. Among 13,721 Hispanic Community Health Study/Study of Latinos (HCHS/SOL) enrollees, we used multivariable-adjusted prevalence ratios to describe characteristics associated with participants' willingness to consent to different levels of biospecimen and genetic data analysis and sharing. At baseline (2008-2011), HCHS/SOL participants almost universally consented to the use of biospecimens and genetic data by study investigators and their collaborators (97.6%; 95%CI: 97.1, 98.0). Fewer consented to biospecimen and genetic data sharing with investigators not affiliated with the HCHS/SOL research team (81%, 95%CI: 80, 82) or any data sharing with commercial/for-profit entities (75%, 95%CI: 74, 76). Those refusing to share their data beyond the study investigators group were more often females, Spanish language-speakers and non-US born individuals. As expected, participants who were retained and reconsented at the six-year follow up visit tended to embrace broader data sharing, although this varied by group. Over time, Puerto Ricans and Dominicans were more likely to convert to broader data sharing than individuals of a Mexican background. Our analysis suggests that acculturation and immigration status of specific Hispanic/Latino communities may influence decisions about participation in genomic research projects and biobanks.
KW - Genetic Research
KW - Hispanic/Latino
KW - Informed Consent
UR - http://www.scopus.com/inward/record.url?scp=85120882473&partnerID=8YFLogxK
UR - http://www.scopus.com/inward/citedby.url?scp=85120882473&partnerID=8YFLogxK
U2 - 10.18865/ed.31.4.547
DO - 10.18865/ed.31.4.547
M3 - Article
C2 - 34720558
AN - SCOPUS:85120882473
SN - 1049-510X
VL - 31
SP - 547
EP - 558
JO - Ethnicity and Disease
JF - Ethnicity and Disease
IS - 4
ER -