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A Brief History of Civil Rights in the United States: Genetic Information Nondiscrimination Act

This guide focuses on the civil rights that various groups have fought for within the United States.

Genetic Information Nondiscrimination Act of 2008

2008 was a big year for those fighting for disability rights, and not just because of the ADAAA. This was the year that also saw the passing of the Genetic Information Nondiscrimination Act (GINA, pronounced Gee-na).

The NIH National Human Genome Research Institute stated that "NHGRI believes that legislation that gives comprehensive protection against all forms of genetic discrimination is necessary to ensure that biomedical research continues to advance. Similarly, it believes that such legislation is necessary so that patients are comfortable availing themselves to genetic diagnostic tests." Thus, for organizations like NIH, GINA was important for the advancement of personalized medicine.

The Coalition for Genetic Fairness presented its own arguments for genetic nondiscrimination. As of 2007, their main argument focused on the fact that because all humans have genetic anomalies, they would all be prevented from accessing medication and health insurance. The Coalition also cited the potential for misuse of genetic information.

GINA legislation historically received support from the majority of both Democrats and Republicans, as evidenced by the 420-3 vote in 2007 by the House.

GINA was designed to prohibit the use of genetic information in health insurance and employment. The Act prohibits group health plans and health insurers from denying coverage to a healthy individual or charging that person higher premiums based solely on a genetic predisposition to developing a disease in the future. The legislation also bars employers from using individuals' genetic information when making hiring, firing, job placement, or promotion decisions. The Act contains amendments to the Employee Retirement Income Security Act of 1974 and the Internal Revenue Code. President George W. Bush signed the bill into law on May 21, 2008.

During the debates leading up to the passage of the law, GINA's detractors argued that the legislation was overly broad and were concerned the bill would do little to fix state law inconsistencies, thus increasing frivolous litigation and punitive damages. In addition, they were concerned that it would force employers to offer health plan coverage for all treatments of genetically-related conditions.

Particularly, insurance industry representatives and lobbyists argued at the time of the act's consideration by Congress that they, the insurers, needed genetic information. Without it, they claimed, more high-risk people would buy insurance, causing rate unfairness.

While GINA has overall been viewed as a strong step forward, critics say that the legislation does not go far enough in enabling personal control over genetic testing results. The law does not cover certain types of insurance, like disability or long-term care.

What is particularly interesting about this piece of legislation is the fact that it has not been heavily litigated. No GINA-related cases have reached the Supreme Court, and, in fact, the first GINA-related case to go to trial was only decided as recently as 2015.


Selected Library Resources:


Additional Resources:


Organizations Supporting GINA: