Prevention for those who can pay: insurance reimbursement of genetic-based preventive interventions in the liminal state between health and disease

Abstract

Clinical use of genetic testing to predict adult onset conditions allows individuals to minimize or circumvent disease when preventive medical interventions are available. Recent policy recommendations and changes expand patient access to information about asymptomatic genetic conditions and create mechanisms for expanded insurance coverage for genetic tests. The American College of Medical Genetics and Genomics (ACMG) recommends that laboratories provide incidental findings of medically actionable genetic variants after whole genome sequencing. The Patient Protection and Affordable Care Act (ACA) established mechanisms to mandate coverage for genetic tests, such as BRCA. The ACA and ACMG, however, do not address insurance coverage for preventive interventions. These policies equate access to testing as access to prevention, without exploring the accessibility and affordability of interventions. In reality, insurance coverage for preventive interventions in asymptomatic adults is variable given the US health insurance system’s focus on treatment. Health disparities will be exacerbated if only privileged segments of society can access preventive interventions, such as prophylactic surgeries, screenings, or medication. To ensure equitable access to interventions, federal or state legislatures should mandate insurance coverage for both predictive genetic testing and recommended follow-up interventions included in a list established by an expert panel or regulatory body.

Clinical exome sequencing in neurologic disease

“…These commonly used codes for exome sequencing should be used regardless of the technique employed, unless specifically noted in the code descriptor. Not all new molecular pathology diagnostic codes are recognized by common payers such as Medicare or Medicaid 20 and coverage environment is variable (table 4), 39,40 due in part to the lack of a comprehensive payer policy justifying the use of this testing clinically in neurologic disease. One Medicare contractor has established a Molecular Diagnostic Services Program (MolDx; Palmetto; http://www.palmettogba.…”

Genetic Testing in a Population-Based Sample of Breast and Ovarian Cancer Survivors from the REACH Randomized Trial: Cost Barriers and Moderators of Counseling Mode

“…Many genetic testing laboratories provide financial assistance programs for uninsured and underinsured individuals. However, coverage varies for multi-gene panel testing (39) and for preventative services (e.g., prophylactic surgery, surveillance magnetic resonance imaging) following a positive test, which places some survivors at risk of being able to afford the cost of a test itself, but unable to afford and benefit from the interventions indicated by the test (40). These concerns are compounded by the uncertain future of the Affordable Care Act, the repeal of which would disparately affect subgroups of the population with known disparities accessing and utilizing genetic services and associated preventative services (16,41).…”

Precisely Where Are We Going? Charting the New Terrain of Precision Prevention

“…In their study of genomic variation studies in Africa, de Vries et al (19) documented three other forms of group harm that “are disadvantageous for ethnic groups but that do not constitute ‘stigma’ in the way that it is currently understood in literature” (p. 1406): ( a ) reputational harms from comparisons across ethnic groups when investigating diseases with normative implications (e.g., misattributed paternity frequencies that can carry implications of promiscuity); ( b ) find-ings that constitute evidence of immoral behavior, such as consanguinity or nonpaternity; and ( c ) projects looking for evidence of group origin or composition, where these are in conflict with social and traditional narratives. In the United States, the risks of commercial exploitation (50), insurance underwriting (91), and ethnic profiling for security purposes (61) might also be added to that list.…”