Search results

<p><strong>Objective: </strong>This study examined perceived satisfaction among Hispanic/Latino individuals who participated in a baseline examination for the Hispanic Community Health Study/Study of Latinos (HCHS/SOL), a large cohort study of 16,415 adults living in four selected communities. <strong></strong></p><p><strong>Method: </strong>An estimated 22% (<em>n</em>= 3,584) of participants completed a questionnaire regarding satisfaction with staff attention, the overall experience during the study examination, and the influence of the informed consent digital video disc (DVD). <strong></strong></p><p><strong>Results: </strong>The majority of participants who completed the questionnaire expressed overall satisfaction with the study. Most participants reported that staff were friendly, courteous and respectful and study test procedures were clearly explained. Participants who preferred to complete the interview in Spanish felt that the informed consent DVD positively influenced their ability to make an informed decision to enroll in the study. Participants who preferred to complete the interview in English tended to report that the baseline examination was longer than expected compared with participants who completed the interview in Spanish. <strong></strong></p><p><strong>Conclusion: </strong>Results demonstrate that culturally and linguistically trained staff and the use of the study's informed consent DVD were effective in explaining study procedures and positively influenced decisions to participate in the HCHS/SOL study. These results can inform recruitment and enrollment strategies for future participation of minority groups into longitudinal cohort studies. <em>Ethn Dis. </em>2016;26(3):435-442; doi:10.18865/ed.26.3.435 </p>

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. Ethn Dis. 2021;31(4):547- 558; doi:10.18865/ed.31.4.547