Advancing Health Agency Versus Autonomy: Community-Valued Research and Ethical Advocacy in Medicaid Policy

This paper advocates a new ethical paradigm for seeking and creating public policy change to bolster individual freedom for millions of health seekers on Medicaid. Bioethicists should prioritize health agency over the principle of autonomy and engage in ethical work with communities who are consistently cast outside the public’s concern. Our mixed-methods, interdisciplinary, community-valued study of Indiana’s Medicaid Expansion, the Healthy Indiana Plan (HIP), examines the “administrative burdens” (Herd and Moynihan, 2018) produced by HIP’s personal responsibility incentives. We demonstrate how these burdens interact and compound each other, contributing to racial disparities in accessing comprehensive health benefits by Black and Latine HIP enrollees. The “alchemy of beauty and events” (Coates, 2024) in the co-production of moral knowledge of sacred values with community members propels our team’s actions for policy change and challenges the framework of health promotion and autonomy through personal responsibility as it resurges through Medicaid nationally.