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The 5th ELSI Congress - ELSIcon2022

ELSIcon2022 Paper: When Covering and Discovering Are at Odds: How the Logic of Health Insurance Undercuts the Promise of Precision Medicine for People with Hereditary Cancer Risks


ELSIcon2022 • Paper • June 1, 2022

Mark Schlesinger, Rachel Grob, Emily Mrig

The past two decades have seen significant advancement in precision medicine approaches to preventing and treating hereditary cancers. However, the impact of individually tailored interventions has been limited and uneven, especially in disadvantaged and minority patient populations. Efforts to reduce disparities have been slow, in part because of differential awareness of testing benefits, elevated anxiety in minority households about cancer, limited communication within minority families about hereditary risks, and less complete family health histories. The magnitude of these four barriers has been well-documented; however, a fifth barrier has been largely overlooked: challenges in getting insurance coverage for genetic testing, even among individuals whose family history make them candidates according to clinical guidelines. In this paper, we explore why these coverage shortfalls are likely experienced more often and consequentially in minority households, and likely a partial source for the four barriers previously identified.

The origins of these coverage gaps – and their greater prevalence among minority patients – are not well understood, making it difficult to design effective policies to expand access to the benefits of precision medicine. Drawing on 48 interviews with individuals living with or at-risk for hereditary cancer, we identify several previously overlooked pathways that account for persisting coverage shortfalls, involving how coverage determinations are based on individual evaluations of the “medical necessity” of genetic testing. We extrapolate some hypotheses from these findings on how coverage-related decisions generate disparities previously documented for hereditary cancers. Finally, we examine possible interventions to address coverage shortfalls and reduce disparities in care.


Access to genetic screening and therapies

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