The Genetic Information Nondiscrimination Act (GINA): What it Means for Your Patients and Families

Abstract

Human genome research is creating new opportunities for a more individualized approach to the screening, diagnosis, and treatment of rare and common diseases. Concerns about insurance discrimination, however, have led many people who could benefit from genetic testing to choose not to have it. Other individuals have chosen to pay for genetic testing on their own. In May 2008, the Genetic Information Nondiscrimination Act, known as GINA, was signed into law. GINA is a federal law that protects United States citizens from health insurance and employment discrimination based on their genetic information. Nurses, who are on the frontlines of healthcare delivery, need to become familiar with the scope and limitations of GINA. This article describes the need for GINA, the scope and limitations of this law, and health provider resources relating to this law. Case studies that illustrate typical situations nurses and their clients may face with regard to genetic and genomic information are provided. Activities that nurses can carry out in their own institutions to facilitate GINA compliance are outlined.