Assessing Genetic Information Protections

The federal Genetic Information Nondiscrimination Act was enacted in 2008 and includes important privacy protections for consumers. But up to 80 percent of the nation’s population, including many physicians, are unaware of the law, says Jeremy Gruber, president of the Council for Responsible Genetics, an advocacy group.

Gruber laid out the protections and gaps of GINA during the recent Health Privacy Summit in Washington. The law covers employment and health insurance, and has expansive coverage in protecting data, test results and family health information without limitation, he noted.

For instance, GINA prohibits insurers from using genetic information as a pre-existing condition in setting eligibility or premium amounts, and they can’t ask an applicant to take a genetic test. It forbids employer discrimination on hiring, firing or promoting based on genetic profiles and severely limits employer acquisition of genetic information. A wellness program, for instance, may ask for voluntary disclosure of genetic information.

But GINA is not a comprehensive privacy law and has large gaps, Gruber says. It does not supersede state laws and most states have limited protection to genetic data. The law also does not cover biobanks, state forensic DNA databases, genetics research, newborn screening, surreptitious testing (without consent) and consumer-based genetic testing.

For instance, who owns the data if a testing firm goes out of business? That and other looming issues have to be revisited as the cost of sequencing a single human genome is about $10,000 now and soon will approach $1,000.  “We envision a future where all individuals will have a genome sequence linked to electronic health records,” says Ed Abrahams, president of the Personalized Medical Coalition, who also spoke at the summit.

Still, with no organized efforts to educate the public, 245 claims of GINA violations were filed in 2011, so the law is being used to some degree, Gruber says.