ELSIcon2022 Flash: Ensuring equity through insurance coverage for whole exome sequencing and reanalysis

The 5th ELSI Congress - ELSIcon2022

Conference

2022-06-03

ELSIcon2022 • Flash • June 3, 2022

Caroline Horrow

With the promise of whole exome sequencing (WES) and whole genome sequencing (WGS), some have argued for an ethical obligation to reinterpret or reanalyze sequence data over time. But as WES moves from research to the clinic, access to both sequencing and reanalysis will likely be subject to the discretion of insurers. With a few limited exceptions, insurers are not legally required to cover WES/WGS or reanalysis, and limited empirical data describe the current extent of coverage.

In light of this uncertainty, this study explores the current state of insurance coverage of WES and reanalysis, and the extent to which coverage policies reflect bioethical justifications. I analyzed policies from the top 3 payers in each state’s individual, small group, large group, Medicare Advantage, and Medicaid MCO markets, as well as Medicare and state Medicaid programs. Coverage determinations were identified for over 450 plans, administered by over 125 unique payers.

Approximately 60% of plans provided coverage for WES in at least some cases, typically for pediatric patients with suspected genetic disorders. However, only 30% of plans provided coverage for WES reanalysis. Additionally, very few policies articulated clinical criteria for WES reanalysis. Available criteria were largely based on new genomic knowledge, new patient symptoms, and family information.

These results indicate that WES coverage is more expansive than previously documented, but reanalysis services are still an afterthought. Regulation may be needed to ensure equitable access not only to WES, but also to the long-term benefits of reanalysis.

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The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 15

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The 5th ELSI Congress - ELSIcon2022 - ELIScon2022 Panel: Polygenic Embryo Screening: Ethical Considerations and Stakeholder Perspectives

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The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022: Paper Session 4

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Panel: Beyond the Binary: A Panel Discussion About Gender, Genomics, and Justice

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Listening Session: ELSI and the All of Us Research Program

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The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: Race-Based Genetic Testing: Learning from Black Americans to Inform Policy and Practice

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Flash: Conceptualization and Measurement of Genetic Literacy

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: The definition and handling of genomic data in a digitalized society: A Japanese perspective

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Flash: Latina women’s knowledge of, preferences for, and experiences with prenatal genetic testing: A scoping review

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: White racial framing and comfort with medical research: a critical analysis

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: Symbolic Legislation and the Regulation of Stroke Biobanking and Genomics Research in Sub-Saharan Africa

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Panel: How does Genetics and Racial Disparities influence Stillbirth Risk and Reoccurrence?

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Flash: Reconstruction of Normality Following the Diagnosis of Ehlers Danlos Syndromes

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: Cystic Fibrosis Communities: Shifting Sites of Prognostic Imagination

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: The need to consider a priori motivations and deterrents: A systematic review of elements influencing the consent process for genetic tests from the perspective of patients.

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Panel: Out of the tower and onto the ground: engaging communities and scientists in emergent research priorities

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Panel: Will it be easier to cure sickle cell disease through gene therapy than prevent the disease through pre-implantation genetic testing for the selection of unaffected embryos?

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: Systematic review of recommendations on the use of race, ethnicity and ancestry in the context of genetics research

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: How useful is genome sequencing to parents of pediatric cancer patients? Findings from the Texas KidsCanSeq Study

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: ELSI and the New Precision Stewards?

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: Reporting “Clinical Utility” in NICU Sequencing Studies: Systematic Review and Call for Rethinking

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: Examining Embeddedness: A Call for Principles and Best Practices for Integrating ELSI

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: Toward an anthropology of rare disease

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: Physician Perspectives on Polygenic Risk Scores

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: The 'Lived Experience' of Pediatric Gene Therapy - A Scoping Review

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: In the Shadows of Virtual Family Trees

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Flash: INSIGHT @ Work: An Interdisciplinary Study on the Ethical, Legal and Social, Implications (ELSI) of Voluntary Workplace Genomic Testing (wGT)

The 5th ELSI Congress - ELSIcon2022 - ELSIcon2022 Paper: Resisting an old vice, or how polygenic risk information can do the most good

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