The Genetic Information Non-Discrimination Act
- Sam Shepherd
- Sep 22
- 5 min read
By Sydney Robinson
The Genetic Information Non-Discrimination Act of 2008 is a federal anti-discrimination statute that prohibits genetic discrimination relating to health insurance and employment [1]. Genetic Information is defined as any information about an individual’s genetic tests and the genetic tests of an individual’s family members and family medical history. The Genetic Information Non-Discrimination Act, also known as GINA, holds two titles, one addressing health insurance and the other addressing employment [1]. Together, this statute serves as an important step towards inclusivity and equality in the workplace, preventing discrimination and unethical hiring practices.
History of GINA
The Genetic Information Non-Discrimination Act of 2008 was signed into law by President George W. Bush after a lengthy journey through Congress [2]. A bill regarding protections for genetic information similar to GINA was first introduced in the House by Representative Louise Slaughter (D-NY) in 1995 [3]. In 1996, a companion bill was introduced in the Senate by Olympia Snowe (R-ME) [2]. Together, Slaughter and Snowe introduced and reintroduced GINA legislation in each Congress from 1997 until 2007. Notably, the first time genetic anti-discrimination legislation was referred to officially as the Genetic Information Non-Discrimination Act was in the 107th Congress, introduced by Senator Snowe in 2002 [2].
Between 2002 and 2005 genetic non-discrimination acts began gaining much support in the Senate, multiple versions of the bill were passed, and its legislative future became palpable [2]. In 2003 the Human Genome Project released its first full sequence of the human genome, sparking both excitement and anxiety in Congress and among the general public about the new genetic advances. From this anxiety sprouted new advocacy groups about the protection of genetic information: the National Human Genome Research Institute and the Human Genome Project were the leading advocacy groups on this matter [4].
In 2007, Representative Slaughter and Senator Snowe reintroduced their bills in the 110th Congress. The bill passed through three committees in the House and eventually moved to the Senate after a 430-3 vote. Once in the Senate, GINA passed with a vote of 95-0 and was signed into law on May 21, 2008 [5].
What does GINA protect?
The Genetic Information Non-Discrimination Act prohibits discrimination on the basis of genetic information with regards to health insurance and employment opportunities [1]. Relating to health insurance, GINA rules that genetic information cannot be considered a pre-existing condition. Genetic information cannot be used to determine health insurance eligibility, premiums, or contribution amounts [6]. The use of pre-existing genetic tests and family genetic history is not accessible to health insurance companies. GINA prohibits health insurers from requiring or requesting genetic testing before offering coverage to patients [6].
In the workplace, GINA offers protections for employees by prohibiting employers from using genetic information to make any type of employment decisions [7]. The basis of this ruling is the idea that genetic information doesn’t tell the employer any information about an individual’s current ability to work. Every aspect of employment decisions is covered by GINA as it is illegal to discriminate based on genetic information for hiring, firing, pay, job assignments, promotions, layoffs, fringe benefits, training and more [8]. Additionally, it is illegal to fire, demote, harass, or otherwise ‘retaliate’ against an employee or job applicant for filing charges of discrimination against an employer. Such charges can be brought if an employer harasses an employee based on their genetic information. In these cases, employees in companies with more than 15 employees have 180 days to file a charge (this may be extended by state laws) for their case to be considered [7]. GINA protections are extended to Federal employees, but they have only 45 days to contact a Federal EEO counselor in cases of genetic discrimination.
What is Not Protected by GINA?
While the Genetic Information Non-Discrimination Act of 2008 is vitally important for the protections of genetic information from health insurance providers and in the workplace, GINA does have limitations [8]. Protections for medically necessary genetic testing and specific treatments do not fall under GINA. If a person requires a specific treatment or genetic test, insurance companies are allowed to use genetic information to determine whether it will be covered, though this genetic information is illegal to use for discrimination in other areas of coverage. Additionally, GINA’s protections do not extend to life insurance, disability insurance, or long-term care insurance. While GINA’s health insurance provisions apply to Medicare, Medicaid, the Federal Employees Health Benefits Program (FEHBP), and most private health insurers, members of the US military, veterans covered by the Department of Veteran Affairs, and individuals using the Indian Health Service are not protected by GINA’s anti-discrimination policies [7].
GINA contains six workplace exceptions [1]. At its core, it states, “it will usually be unlawful for a covered entity to get genetic information” [1]. Inadvertent acquisitions of genetic information do not violate GINA; situations where genetic information is overheard by a manager or supervisor are protected. Genetic information can also be obtained by an employer if provided voluntarily by the employee [1]. In the case of FMLA leave, where an employee requests leave to care for a family member with a serious health condition, family medical history may be requested for approval status. In similar situations, genetic information may also be acquired through public access channels, like newspapers or online forums [1]. One caveat to this is that employers are only allowed to use this information if they happen upon it. It is illegal for them to actively search for this information with the intent of future discrimination. Additionally, in workplaces that require biological testing, such as forensic labs or environments where toxic substance screening is necessary, employers have access to necessary employee genetic and health information but are prohibited from accessing an employee's extensive genetic background [1].
GINA
The Genetic Information Non-Discrimination Act of 2008 is an important piece of legislation for the protection of human rights [5]. Access to genetic information can lead to discrimination, harassment, and prejudice against certain individuals, preventing their ability to obtain insurance coverage and equitable jobs. As the world becomes more advanced and genetic testing capabilities increase, it is vital that GINA’s protections remain to ensure the rights of those with certain familial and personal genetic and medical histories can live in a non-discriminatory and safe environment.
Citations
[1] “Genetic Information Discrimination.” U.S. Equal Employment Opportunity Commission. Accessed September 15, 2025. https://www.eeoc.gov/genetic-information-discrimination.
[2] “Timeline of the Genetic Information Nondiscrimination Act (GINA).” Genome.gov, February 7, 2024.
[3] “Slaughter, Louise McIntosh.” US House of Representatives: History, Art & Archives. Accessed September 15, 2025. https://history.house.gov/People/Detail/21738.
[4] “The Genetic Information Nondiscrimination Act (GINA).” ASHG, April 7, 2025. https://www.ashg.org/advocacy/gina/#:~:text=GINA%20is%20a%20U.S.%20federal,for%20all%20Americans%20against%20discrimination.
[5] “HUSL Library: A Brief History of Civil Rights in the United States: Genetic Information Nondiscrimination Act.” Genetic Information Nondiscrimination Act - A Brief History of Civil Rights in the United States - HUSL Library at Howard University School of Law, January 6, 2023. https://library.law.howard.edu/civilrightshistory/disabled/gina.
[6] “Health Insurance Protections Under GINA.” Gina Health Insurance Protections. Accessed September 15, 2025.
[7] “Genetic Discrimination.” Genome.gov, January 6, 2022. https://www.genome.gov/about- genomics/policy-issues/Genetic-Discrimination.
[8] “The Genetic Information Nondiscrimination Act of 2008: ‘Gina.’” DOL. Accessed September 15, 2025. https://www.dol.gov/agencies/oasam/centers-offices/civil-rights-center/statutes/genetic-information-nondiscrimination-act-of-2008/guidance.
