Genetic Information Nondiscrimination Act

Enacted on May 21, 2008, the Genetic Information Nondiscrimination Act (GINA) prohibits that use of genetic information in health insurance and employment decisions. Genetic information includes an individual’s, genetic tests, family medical history, family member’s genetic tests, or a request for genetic information.

GINA prohibits insurance companies from both denying coverage and increasing premiums for healthy individuals based on their genetic predisposition of developing a disease in the future. The act also restricts employers from making hiring, firing, or promotion decisions based on an individual’s genetic data. Moreover, this law prohibits harassment of another person based on their genetic information.

GINA legislation received overwhelming support from both Democrats and Republications. In 2007, the House voted 420 for and 3 against. The National Institute of Health’s National Human Genome Research Institute as well as the Coalition for Genetic Fairness are two major supporters of GINA.

Founded in 1997, the Coalition for Genetic Fairness (CGF) was the first group to address genetic discrimination. CGF consists of patient and civil rights groups, and they spearheaded the federal genetic non-discrimination legislation.  The CGF has published an excellent patient education document titled GINA and You. 

Geneforum provides a list of the primary arguments against genetic nondiscrimination bills: (1) GINA is too weak and limited to cases where employers intentionally seek out genetic information, (2) employers should have the right to collect genetic information if it is relevant to worker safety, (3) insurance companies should still have access to genetic information for “improving quality of healthcare,” and (4) genetic discrimination is not happening, therefore the legislation is irrelevant.

Poignantly summarized by Wallack and Lawrence (2005), “A society that accepts the reality of human interconnection and effectively structures itself so that egalitarian and humanitarian values are more fully reflected in public policy will be a society that better understands the meaning of public health and responds more appropriately to its challenges. It will be a society that not only talks about community but translates its values into caring—and more effective—public policy.” 

For more information about GINA, check out the website www.dnapolicy.org and see the attached document, GINA Help.

Click here to download the GINA Help PDF.