Cancer genetic testing in marginalized groups during an era of evolving healthcare reform

BACKGROUND: The Affordable Care Act and subsequent reforms pose tradeoffs for racial-ethnic, rural, and sex-related groups in the United States experiencing disparities in BRCA1/2 genetic counseling and testing and colorectal cancer screening, calling for policy changes. METHODS: A working group of the American Public Health Association Genomics Forum Policy Committee engaged in monthly meetings to examine ongoing literature and identify policy alternatives in the coverage of cancer genetic services for marginalized groups. 589 items were collected; 408 examined. Efforts continued from February 2015 through September 2020. RESULTS: African Americans and Latinos have shown 7–8 % drops in uninsured rates since the Exchanges opened. The ACA has increased BRCA1/2 test availability while several disparities remain, including by sex. Rural testing and screening utilization rates have improved. Medicaid expansion and the inclusion of Medicare in the ACA have resulted in mixed improvements in colorectal cancer screening rates in marginalized groups. CONCLUSION: Cancer genetic testing and screening to date have only partially benefited from healthcare reforms. Sensitivity to cost concerns and further monitoring of emerging data are needed. A reduction in disparities depends on the availability of private insurance, Medicaid and Medicare to the marginalized. Attention to value-based design and the way cancer benefits are translated into actual testing and screening are crucial. POLICY SUMMARY: The findings suggest the need for further benefits-related health agency interpretation of and amendments to the ACA, continued Medicaid and innovative Medicare expansion, and incorporation of cancer services values-based considerations at several levels, aimed at reducing group disparities.