Understanding GINA through case examples: A guide for US-based genetic counselors

The Genetic Information Nondiscrimination Act (GINA) is a well-known law within the genetic counseling community. Most genetic counselors are familiar with its major provisions, including prohibiting genetic discrimination in health insurance and employment. Nevertheless, clinical scenarios often arise for which genetic counselors were not specifically trained. Anchoring ourselves in clinical case examples, this article provides a brief guide to GINA contextualized in specific scenarios where misunderstandings of the law on the part of the genetics professional and patients are likely. This paper focuses on the legal context of the United States. The scenarios discuss state laws that have been passed to strengthen GINA's protections since GINA was passed, as well as GINA's relationship with military service members, GINA's interactions with the Affordable Care Act (ACA), and stipulations on lowering insurance premiums. This paper also summarizes advice for discussing the possibility of discrimination for life, disability, or long-term care insurance with patients, as well as questions to consider when assessing state laws. The intention of this paper is not to provide legal advice or address specific situations, but to provide commentary that can be used by genetics professionals, in collaboration with privacy/compliance colleagues, to establish practices and policies, reflective of their hospital policies, state, and federal law.