Healthcare experiences and the cycle of genomic healthcare disparities: A cross-sectional study utilizing the ‘All of Us’ research program

Our understanding and utilization of genetics in healthcare continues to increase, but historically excluded and underrepresented groups (e.g., racial minority groups, those living in rural areas, and individuals from lower socioeconomic backgrounds) are often left behind due to barriers in accessing genetic healthcare and research. Although research priorities have shifted toward greater inclusion, underrepresentation persists, potentially driven by ongoing negative healthcare experiences that compound barriers to accessing genetic research and healthcare services, creating a cycle of genomic healthcare disparities. However, there is limited research about how healthcare experiences may contribute to genomic healthcare disparities. We examined this knowledge gap by using data from the All of Us Research Program to investigate healthcare experiences of participants from underrepresented groups as well as participants with clinically diagnosed genetic conditions. We explored three survey questions which documented self-reported experiences when receiving healthcare (i.e., inclusion in medical decisions, being treated with respect by providers, and receiving easy to understand medical information). Survey question responses were analyzed within a regression framework which included self-identified race, age, gender identity, health insurance status, education and income levels, having a diagnosed genetic condition, and rural location as predictors. Results suggest many populations (e.g., minoritized racial and gender groups, individuals who have had to delay care due to living in a rural area, and those with genetic conditions) face inequities in healthcare experiences. These findings support the proposed conceptual model of a genomic healthcare disparity cycle and the need to address these negative healthcare experiences to break the cycle.