When Covering and Discovering Are at Odds: How the Logic of US Health Insurance Undercuts the Promise and Equity of Precision Medicine for People with Hereditary Cancer Risks

Context: Despite precision medicine's promise to revolutionize healthcare, access remains uneven, and disparities persist. This study examines how conflicts between the institutional logics of genetic science (“discovering”) and market-based health insurance (“covering”) impede precision-driven health equity. Methods: We conducted 44 semi-structured, in-depth interviews with individuals at elevated risk for hereditary cancer. Data were analyzed using an abductive approach, combining thematic analysis with grounded theory tools. Findings: Analysis reveals seven “zones of conflict” where precision medicine's aspirations clash with insurance practices, creating barriers to genetic testing and related services. These zones span initial access barriers (e.g., complex billing, inconsistent guideline uptake) and downstream care factors (e.g., financial concerns, lack of retesting guidelines). The interplay between expanding genomic knowledge and the fragmented American healthcare system particularly disadvantages underrepresented and minority populations. Conclusions: Participant experiences reveal more unanticipated sources of inequity than precision medicine proponents anticipated. Incremental reforms targeting these conflict zones, such as guideline harmonization, expanding coverage mandates, and enhanced patient advocacy related to insurance coverage, could mitigate cascading disparities. This study highlights the importance of addressing institutional misalignments to realize the full equitable potential of precision medicine involving genetics.