This project takes up pressing ethical, legal, and social issues surrounding the return of medically actionable genetic research results to un/underinsured participants in the All of Us Research Program (AoURP) that are recruited at federally qualified health centers (FQHCs). AoURP enrollees are motivated in part by the return of genetic information. However, the prospect of returning medically actionable genetic information to AoURP participants is wrought with anxiety among FQHC staff and leadership because of barriers to accessing follow- up care for their un/underinsured patients. Our overall objective in this supplement is to make progress toward mitigating the challenges that un/underinsured AoURP participants recruited from FQHCs may face when they seek and access care for medically actionable genetic research results. Un/underinsured patients are typically left of out advances in genomics because they cannot afford to follow-up on research findings in the clinical setting, and face myriad barriers to accessing specialized care for lifelong disorders (e.g. barriers with regard to transportation, childcare, obtaining time off from work, and following specialized diets). We will convene FQHCs participating in AoURP with experts in community health, institutional capacity-building, and ELSI issues, to review current practices for returning genetic research results to un/underinsured patient-participants in genomics research results, and identify their barriers to accessing care. The project will recommend strategies and/or policies to enhance the capacity of FQHCs to provide access to care for un/underinsured participants in AoURP who receive medically actionable genetic research results, including strategies and policies to mitigate their barriers to care. With respect to outcomes, this supplement will inform subsequent studies that implement and test recommended strategies to mitigate the challenges of following up on information about medically actionable genetic results in the FQHC context. Furthermore, the supplement can support the development of just policies at the AoURP program level so that benefits of participation do not disproportionately accrue to wealthier, insured participants. Such policies will have a positive impact on the willingness of participants, in particular un/underinsured participants, in the AoURP to remain engaged, which will help the AoURP achieve a reduction in racial, ethnic, and class health disparities by ensuring that all people benefit from advances in genomics.
Our overall objective is to make progress toward mitigating the challenges that un/underinsured participants in the All of Us Research Program may face when they access care for medically actionable genetic research results. Un/underinsured patients are typically left of out advances in genomics because they cannot afford to follow-up on research findings in the clinical setting, and face myriad barriers to accessing specialized care for lifelong disorders (e.g. barriers with regard to transportation, childcare, obtaining time off from work, and following specialized diets). Our long-term goal is the reduction in racial, ethnic, and class health disparities by ensuring that all people, including those that are un/underinsured, benefit from advances in genomics.
