What is the Genetic Information Nondiscrimination Act?

Signed into law in May 2008, the Genetic Information Nondiscrimination Act is the federal mandate approved by the United States Congress that protects Americans from genetic discrimination, or genism. It is geared toward cases of discrimination against patients and those in the workplace from health insurance companies and/or employers, respectively. A case of genetic discrimination might involve an insurance company that denies coverage to someone that is genetically predisposed to getting a particular disease.

The Genetic Information Nondiscrimination Act prohibits insurance companies, offering either group or individual coverage, from raising premiums or denying an application altogether based on genetic testing results. The law does not cover life insurance, disability insurance or long-term care insurance. The Genetic Information Nondiscrimination Act is commonly referred to as GINA and also prohibits employers from factoring the same genetic information in hiring, firing or other job placement decisions.

GINA easily passed through both the Senate and the House of Representatives, before President George W. Bush signed it into law on May 21, 2008. The health insurance portion of the legislation went into effect in May 2009, while the employer regulations took effect in November 2009.

The creation of this law arose out of concern over the misuse of genetic information by insurance companies. Genetic test results are often regularly included in medical records which insurance companies could potentially use to determine coverage. That is, some people were concerned over the possibility of people's genetic predisposition to developing a disease or condition in the future affecting insurance coverage decisions. Moreover, if genetic test results could be used to deny employment or insurance coverage, some feared it would encourage Americans to forgo testing and lose out on the chance to take steps to avoid or preventatively treat medical problems.

Though there was overwhelming support in the final votes of this bill, this was a highly-debated issue. Conversations and proposals were debated in both houses of Congress for approximately 13 years. The late Sen. Ted Kennedy, D-Mass., who worked on this legislation for more than a decade, called it the "first major new civil rights bill of the new century," when it was signed into law. Those who argued against this legislation, including the National Association of Manufacturers, the United States Chamber of Commerce, and members of the Genetic Information Nondiscrimination in Employment Coalition, thought the law was addressing a problem thought, but not proven, to exist.