GINA, Imperfect But Official

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On November 21, 2009, 18 months after President Bush signed it into law, the Genetic Information Nondiscrimination Act of 2008 became officially effective. Also known as GINA, the law prohibits employer discrimination based on genetic information and also prohibits health insurers from denying coverage or setting rates based on a person's genetic makeup, such as a predisposition to a disease.

“This legislation is especially welcome and timely given the fact that we're entering a new medical era in which our genomes will be increasingly explored to aid in diagnosis and treatment of disease,” says James P. Evans, MD, PhD, Editor-in-Chief of the journal Genetics in Medicine and the Bryson Professor of Genetics and Medicine at the University of North Carolina at Chapel Hill. “It is difficult enough to have to contend with a genetic disorder or disease predisposition without the added agony of worrying about what that knowledge might do to your ability to get insurance,” he adds.

Still, although widely considered a step in the right direction, GINA does not afford any protection to individuals with regard to life, disability, or long-term care insurances. And unless comprehensive health care reform establishes requirements for insurers to offer coverage to all Americans who apply, and prohibits them from denying coverage or charging more based on overall health, GINA does nothing to protect individuals from insurance discrimination once they have developed signs or symptoms of a genetic (or any other) disease.

Meanwhile, GINA's impact on recruitment of participants for genetic research participants remains unknown. The government's Office of Human Research Protections offers an informational “guidance” on GINA implications for investigators and Institutional Review Boards involved in Department of Health and Human Services-funded genetic research. But it remains to be seen whether or not people would be more likely now to participate in genetic research studies, to volunteer for genetic testing.

The Act can be found at:http://www.gpo.gov/fdsys/pkg/PLAW-110publ233/pdf/PLAW-110publ233.pdf. See the OHRP guidance at: http://www.hhs.gov/ohrp/humansubjects/guidance/gina.html.