The Price of Genetic Knowledge: Implications of DNA and Pharmacogenetic Testing on Insurance Access and Data Use

Abstract

Genetic testing, including pharmacogenetic testing, is transforming personalized healthcare by improving risk assessment and treatment decisions. However, these advancements raise ethical, practical, and legal concerns for data privacy and security, as test results are often stored in EHRs. Additional concerns include the use of genetic data in underwriting for policies not covered under the federal Genetic Information Nondiscrimination Act of 2008, including life, disability, and long-term care insurance.These issues affect patients, consumers, and the broader healthcare system by increasing costs when patients delay testing or treatment out of fear of discrimination. They also strain public health programs when individuals are denied coverage because of genetic risks, leading to a "genetic underclass," in which people with certain genetic predispositions are marginalized from the insurance market. Applying a bioethics framework of autonomy, beneficence, nonmaleficence, and justice allows these issues to be examined, and current protections to be evaluated for the purpose of instituting change.