Factors Influencing Genetic Screening Enrollment among a Diverse, Community-Ascertained Cohort.

INTRODUCTION: Genetic screening for preventable adult-onset hereditary conditions has been proposed as a mechanism to reduce health disparities. Analysis of how race and ethnicity influence decision-making to receive screening can inform recruitment efforts and more equitable population screening design. A study at the University of Washington Medicine that invited unselected patients to participate in genetic screening for pathogenic variation in medically important genes provided an opportunity to evaluate these factors. METHODS: We analyzed screening enrollee survey data to understand factors most important and least important in decision-making about screening overall and across different race and ethnicity groups. Electronic health record race and ethnicity and survey-reported race and ethnicity were compared to assist with interpretation. Comments provided about reasons for not enrolling in screening were analyzed using content analysis. RESULTS: Overall, learning about disease risk and identifying risk early for prevention purposes were important factors in decision-making to receive screening, and regrets about screening and screening being against one's moral code were not viewed as important. Although racial identity was challenging to assign in all cases, compared to other enrollees, African-American and Asian enrollees considered test accuracy and knowing more about the test to be of greater importance. Three themes emerged related to nonparticipation: benefits do not outweigh risks, don't want to know, and challenges with study logistics. CONCLUSION: Our results highlight important motivators for receiving screening and areas that can be addressed to increase screening interest and accessibility. This knowledge can inform future population screening program design including recruitment and education approaches.

Integrating health disparities content into health informatics courses: a cross-sectional survey study and recommendations.

Objective: To assess the extent to which health disparities content is integrated in multidisciplinary health informatics training programs and examine instructor perspectives surrounding teaching strategies and challenges, including student engagement with course material. Materials and Methods: Data for this cross-sectional, descriptive study were collected between April and October 2019. Instructors of informatics courses taught in the United States were recruited via listservs and email. Eligibility was contingent on course inclusion of disparities content. Participants completed an online survey with open- and closed-ended questions to capture administrative- and teaching-related aspects of disparities education within informatics. Quantitative data were analyzed using descriptive statistics; qualitative data were analyzed using inductive coding. Results: Invitations were sent to 141 individuals and 11 listservs. We obtained data from 23 instructors about 24 informatics courses containing health disparities content. Courses were taught primarily in graduate-level programs (n = 21, 87.5%) in informatics (n = 9, 33.3%), nursing (n = 7, 25.9%), and information science (n = 6, 22.2%). The average course covered 6.5 (range 2-13) social determinants of health; socioeconomic status and race/ethnicity (both n = 21, 87.5%) were most frequently addressed. Instructors described multiple obstacles, including lack of resources and time to cover disparities topics adequately, topic sensitivity, and student-related challenges (eg, lack of prior understanding about disparities). Discussion: A foundational and translational knowledge in health disparities is critical to a student's ability to develop future equitable informatics solutions. Based on our findings, we provide recommendations for the intentional and required integration of health disparities-specific content in informatics curricula and competencies.