When the Genetic Information Nondiscrimination Act (GINA) was signed into law in May 2008, it marked a major breakthrough in protection for medical consumers, as well as a giant step toward the future of medical research. Senator Ted Kennedy applauded GINA, in his speech on the Senate floor in April 2008, as "the first civil rights bill of the new century of the life sciences."
The path to GINA's passage was lengthy. More than 15 years earlier, in 1993, a Human Genome Project (HGP) working group on ethical, legal, and social implications of the HGP urged that information about a person’s health status should not influence health insurance eligibility. One concern was that, if genetic information could be used to deny insurance coverage or increase rates, people would be unwilling to become involved in research or share their genetic information with family or healthcare providers. The working group envisioned an environment in which people would be protected from any discrimination based on their genetic make-up.
… 92 percent of survey participants did not want genetic information shared with employers; and 80 percent of respondents felt health insurers should not have access to their genetic information
The next decade saw repeated, but unsuccessful, attempts to pass legislation protecting people from misuse of genetic data. Congress's inability to pass the bill stemmed in part from business's concerns about the burden of complying with a new law.
However, public support was strong. A 2004 study by the Genetics and Public Policy Center of Johns Hopkins University found that 92 percent of survey participants did not want genetic information shared with employers; and 80 percent of respondents felt health insurers should not have access to their genetic information. Researchers also reported people's concerns with participating in genetic research, fearing discrimination based on genetic findings.
At last, in April 2007, a version of the bill introduced by Rep. Louise Slaughter (D-NY) and Rep. Judy Biggert (R-IL) was approved by the House. It subsequently passed unanimously in the Senate on April 24, 2008, and was signed into law in May 2008. GINA bars health insurance companies from using genetic information to make decisions about insurance eligibility, coverage, premiums, or underwriting; and prohibits employers from discriminating against employees in any aspect of employment, based on their genetic information. Nor are employers allowed to disclose genetic information about their employees or even job applicants.
GINA’s protection against discrimination … focuses on genetic information, not the manifestations of genetic disease.
However, GINA does not prevent healthcare providers from recommending genetic tests. It does not require coverage for specific genetic tests or treatments. And GINA does not prevent insurers from considering health status in setting premiums – although, starting January 1, 2014, the Affordable Care Act will prohibit higher premiums based on health status (i.e., pre-existing conditions). In short, GINA's protection against discrimination by employers or health insurance companies focuses on genetic information, not the manifestations of genetic disease.
"The sequencing of the human genome held great promise for human health, but at the same time held great potential for stigmatization and discrimination," wrote Rep. Slaughter recently, in the Harvard Journal on Legislation. "GINA took thirteen long years to pass the House and Senate and get signed into law… I am proud of the potential it offers to advance medical research and treatment by freeing people from the fear of losing their job or health insurance based on genetic information."
(1) All About the Genetic Information Non-Discrimination Act of 2008 (GINA). NHGRI Webinar Series.
(2) Read the actual legislation for GINA. H.R. 493: Genetic Information Non-Discrimination Act of 2008 .