Connecting the dots: Carrier screening and the Genetic Information Nondiscrimination Act in the United States

Objective To highlight the possibility of genetic discrimination in the United States with respect to carrier screening under limitations of the Genetic Information Nondiscrimination Act (GINA) and to encourage providers to educate patients about this possibility during pretest counseling. Methods Review of current professional guidelines and practice resources regarding the necessary components of pretest counseling for carrier screening in the context of GINA's limitations and the potential impact of carrier screening results on life, long‐term care and disability insurance. Results Current practice resources advise that patients in the United States should be informed that their employer or health insurance company generally cannot use their genetic information during the underwriting process. However, these resources do not elaborate on GINA's limitations or explain why there may be adverse consequences to patients regarding these limitations. Studies have demonstrated significant gaps in provider knowledge of GINA, especially for those without formal genetic training. Conclusion Enhanced education and provision of GINA educational resources for providers and patients will help ensure that patients have the opportunity to prioritize their insurance needs prior to undergoing carrier screening. Key points What is already known about this topic? The Genetic Information Nondiscrimination Act (GINA) does not protect patients from genetic discrimination from life, long‐term care, and disability insurance companies or from employers and health insurance companies under certain circumstances. GINA's limitations are routinely discussed in pretest counseling in oncology and medical genetics. What does this study add? This work further explains why GINA's limitations should be included in pretest counseling for carrier screening and how patient results may affect these forms of insurance.