The Genetic Information Nondiscrimination Act of 2008 (“GINA”) protects individuals from genetic discrimination in matter of employment and health insurance. As genetic science began to advance rapidly in the 1990s many began to worry that participating in genetic research or undergoing genetic testing would affect their employment and health insurance. In 2008, the Congress passed GINA to address these concerns.
GINA protected genetic information including individual and family genetic health history, genetic test results, genetic counselling and other genetic services, and participation in genetic research. Under GINA, employers and health insurers cannot request genetic testing or access an individual’s genetic information without the individual’s consent. Only the individual can decide how and how much of their genetic information is shared with third parties.
Furthermore, employers or health insurers with access to an individual’s genetic information cannot discriminate on the basis of such information. GINA prevents employers from making job related decision such as, hiring, firing, promotion, and pay, based on an individual’s genetic information. GINA also prevents health insurance companies from using an individual’s genetic information to decide health insurance coverage, cost, or benefits for that individual. Some states have enacted more stringent legislation to protect genetic information, GINA does not override such laws, it merely lays down the minimum floor for such protection.
The U.S. military is an important exception to GINA. The military can use genetic information to make employment decision. GINA also does not apply to employers with less that 15 employees.
The Internal Revenue Service, Department of Labor, and Department of Health and Human Services implement GINA’s provisions governing health insurance (Title I) and the Equal Employment Opportunity Commission implements GINA’s provisions governing employment (Title II).
GINA had important implications for individual taking part in genetic studies. GINA required genetic researchers to use consent forms and explain confidentiality of genetic information to participants in their studies.
Over the past decade since GINA was enacted, not many cases have dealt with the issue. In whatever little litigation that did occur, many courts have wrestled with the scope of “genetic information,” as to what information GINA covers and does not cover. Lowe v. Atlas Logistics Grp. Retail Servs. (Atlanta), LLC is a famous case revolving around GINA where an employer required two employees to take genetic tests. The United States District Court for the Northern District of Georgia rejected the defendants claim that GINA only protected medical genetic testing and not forensic genetic testing. The jury verdict awarded the plaintiff employee $2.2 million in damages.
[Last updated in June of 2020 by the Wex Definitions Team]