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Oxford University Press




In the past decade, the field of genomics has rapidly changed and expanded.1 With these advancements also come new applications of genomics and genetics to clinical medicine. The information gathered from genetic testing and genome sequencing can reveal a great deal about not only an individual's current health, but his/her future health as well.2 This rapid expansion of scientific and medical capacity is accompanied by rapid changes for law and policy making thoughtful regulation essential. The human genome includes many variations, most of which have no known significance. However, some variants can be the cause of important medical conditions, and for a subset of these, there are useful healthcare interventions, which can be deployed if the genetic variation is recognized. Sometimes, these genetic variations are the specific target of a genetic test. Sometimes, the variations are found incidentally, in a genetic test performed for other purposes, such as pharmacogenomics or preconception screening.3 In 2013, the American College of Genetic Medicine (ACMG) released recommendations specifying which of these incidental findings should be given to clinicians.4 The ACMG limited its recommendation to 56 genetic variations, which can result in approximately 24 genetic conditions. Most of these genetic conditions are very rare, with many of the available treatments limited to continued monitoring and increased surveillance for changes in symptomology and/or disease progression.5 Anya E.R. Prince discusses these issues in her article, ‘Prevention for those who can pay: insurance reimbursement of genetic-based preventive interventions in the liminal state between health and disease.’6 Prince worries that while many health insurance companies offer coverage for genetic testing, fewer offer coverage for prophylactic measures and treatments for the conditions said testing might reveal. Lack of such coverage would undermine the policy goals that motivated insurance coverage mandates in the first place, and may perpetuate health disparities. We advance Prince's analysis of this issue by exploring actual coverage in the private health insurance market, which covers 64 per cent of Americans.7 In particular, we analyse the coverage of two genetic conditions—BRCA and catecholaminergic polymorphic ventricular tachycardia (CPVT)—by reviewing policy documents of commercial health insurance companies, including Cigna, Aetna, Blue Cross Blue Shield, and United Health One. We find that, while genetic testing and consequent treatment is not universally covered, many companies do offer a broad scope of coverage in this area. Prince argues that the Affordable Care Act (ACA) and ACMG tout preventative measures without considering the impact the information can have on individuals who are unable to afford the preventative next steps.

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