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

当保障与发现相互矛盾时:美国医疗保险的逻辑如何削弱了精准医疗对具有遗传性癌症风险人群的承诺和公平性

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Abstract

CONTEXT: Despite precision medicine's promise to revolutionize health care, 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: The authors conducted 44 semistructured 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 health care 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 enhancing 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.

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