Knowledge Of Genome Sequencing In Relation To Trust In Medical Researchers Among Patients With Idiopathic Dilated Cardiomyopathy

Introduction Although cardiovascular disease contributes outsized mortality in patients from underrepresented racial-ethnic groups, recruiting diverse patients for genomic research has been a challenge. Trust in medical researchers and knowledge of genetics may influence patients’ decision to participate in genetic studies. Little is known about how trust in researchers varies by race and ethnicity among patients with dilated cardiomyopathy (DCM) and if it is associated with patients’ knowledge of genome-sequencing. Understanding these may help identify barriers to research participation and develop strategies to educate patients about the role of genetics in cardiovascular disease. Objectives/Hypothesis This study aimed to 1) assess racial and ethnic disparities in genome-sequencing knowledge and trust in researchers among patients with DCM and 2) determine the role of genome-sequencing knowledge in the association of trust with race and ethnicity. We hypothesize that better genetic knowledge may partially mitigate racial and ethnic differences in trust of researchers. Methods A cross-sectional study was conducted by a consortium of 25 US heart failure programs. Participants included patients with DCM defined as left ventricular systolic dysfunction and left ventricular enlargement after excluding usual clinical causes. Enrollment occurred from June 7, 2016 to March 15, 2020. Knowledge of genome sequencing and trust in researchers were assessed by previously established questionnaires. Mixed effect models with a site random effect were used to estimate percentages, means, and associations of genome-sequencing knowledge scores and research trust scores for Hispanic, non-Hispanic White and non-Hispanic Black participants, after adjusting for confounding variables. Results Among 1,121 participants, mean age was 51.6 years (SD=13.6) with 41.4% non-Hispanic Black, 8.5% Hispanic, and 43.4% female. After accounting for multisite effect, the level of genome-sequencing knowledge was lower in non-Hispanic Black and Hispanic participants compared with non-Hispanic White participants [mean score difference: -2.9 (95% CI: -3.6 to -2.2) and -2.6 (95% CI: -3.9 to -1.2), respectively]. The level of trust in researchers was lowest in non-Hispanic Black participants (mean score: 27.7), followed by Hispanic participants (29.4) and non-Hispanic White participants (33.9) (P values <.001). Racial and ethnic disparities remained after adjusting for education, age at enrollment, duration of dilated cardiomyopathy, and health status. A higher level of genome-sequencing knowledge was associated with higher trust scores (mean difference: 4.4, 95% CI = 3.3 to 5.5) and mediated partially the association between trust scores and race and ethnicity. Conclusions Large racial and ethnic disparities in levels of genome-sequencing knowledge and trust in medical researchers were observed. These findings suggest that patient education regarding genetic research may help enhance research trust, informing the recruitment process of diverse patient populations in future genetic studies.