The Genetic Information Nondiscrimination Act (GINA):

Genetic Civil Rights

Angelina Lapaeva

Human Resource Law

MG 335-1

Professor William A. Aniskovich, JD

December 15, 2021

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In 2008, the Genetic Information Nondiscrimination Act (GINA) was passed to protect

employees from employers and health insurers using genetic information to deny employment

and insurance coverage. Genetic technology helps to detect and prevent diseases. This

technology is beneficial to humanity, inclusive of all socioeconomic backgrounds. Still, genetic

information can be used to discriminate against prospective and current employees. 1 DNA

testing is used for various fields, including archaeology, forensics, medicine, and research. It has

been a groundbreaking scientific discovery and has become available to the mass public in recent

decades. However, because GINA was established as a deterrent, DNA tests may have signaled

unease and confusion to those it was designed to protect. The history of discrimination further

exacerbates skepticism of DNA testing and its connection to privacy rights. Still, GINA is a

successful law for deterring discrimination and supporting privacy rights for employees.

Before GINA’s enactment, Title I of the Americans with Disability Act (ADA) provided

protections against disability-related genetic discrimination in the workplace. 2 However, the

ADA only protects individuals with symptomatic genetic diseases or disorders. 3 In 1998, the

Department of Labor, Department of Health and Human Services, Equal Employment

Opportunity Commission and Department of Justice emphasized the importance of American

workers having further protection under federal legislation for genetic testing. The institutions

foresaw the benefits of the technology to detect and prevent health disorders.4 The technology

includes potential health hazards and DNA mutations caused by the work environment. If there

1
“Genetic Information and the Workplace.” National Human Genome Research Institute. January 20, 1998. 1
https://www.genome.gov/10001732/genetic-information-and-the-workplace-report.
2
“Genetic Information and the Workplace.” January 20, 1998. 5
3
Ibid. 10
4
Ibid. 3
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was less public concern about the consequences regarding genetic testing, such data and research

would aid in medical advances.5 Congress had this in mind while establishing GINA.

GINA is not to be confused with the Americans with Disabilities Act (ADA). The ADA

bans discrimination against individuals with disabilities. Unlike GINA, one must have a

manifested condition to be covered under ADA. Confusion between GINA and ADA occurs. For

example, U.S. District Judge Michael Barrett ruled to dismiss a motion when a woman was fired

after testing positive for a cancer gene and filed suit under ADA in Darby v. Childvine, Inc.6

Darby did not have a manifested disability despite having gone through double-mastectomy and

having the BRCA1 gene. She did not qualify under the ADA because she was not majorly

disabled from her diagnosis. However, Darby should have considered filing under GINA since

she was terminated after her employer learned of her genetic abnormality.

The law started to morph in Congress in the early 1990s. People were worried about

genetic information jeopardizing health insurance coverage. 7 When Congress passed GINA,

“discrimination based on genetic information was not a widespread social problem” (Areheart

and Roberts 2019, p. 7). Congress hoped to encourage genetic testing by protecting privacy

rights under the Act by banning employers and health insurance companies from requesting

genetic testing and using the information against individuals.

Still, due to privacy issues and possible consequences, employees experience great

unease with genetic testing. GINA protects the privacy of employees to a degree. The Act

specifically bans employers from asking employees for genetic test results, family members’

5
“Genetic Information and the Workplace.” January 20, 1998. 6
6 “Darby v. Childvine, Inc., No. 1:18-Cv-00669, 2019 BL 447288, 2019 AD Cases 447288 (S.D. Ohio Nov. 20,
2019), Court Opinion” n.d.
7 Areheart and Roberts 2019
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results, and family medical history. GINA only applies to employment and health insurance, and

these are the arenas people are primarily concerned with. Even with the protection under the law,

there is still concern with the issue of watercooler conversations. Employers cannot discriminate

based on genetic information even when an employee voluntarily discloses his private

information. Suppose the employer learned through a casual discussion that an employee is

susceptible to a congenital disease. In that case, this information must stay confined and not be

used to rate or terminate the employee.

Inadvertently, the enactment of GINA set a precedent for privacy laws in the workplace.

Humanyze, a company in Silicon Valley, tracks its employees’ location, conversations, and

movement during work. This information is compiled with their e-mail, calendar, and personal

information.8 Such data can benefit an employer, but laws are not particularly concerned with

helping the employers. Big data companies bring a great deal of worry regarding privacy and

information ownership. GINA can potentially guide future laws protecting employees’ and

consumers’ personal and private information against big data and employers.

In 2008 when GINA passed, DNA testing was not widely available when employers were

prohibited from requesting genetic information from their employees. The Equal Employment

Opportunity Commission filed twelve GINA cases before 2017 and none since. 9 In 2015, Lowe

and Reynolds won a GINA case against Atlas Logistics. Atlas Logistics requested their DNA

samples to identify who was responsible for defecation instances in the warehouses. The District

Court in Atlanta ruled for the plaintiffs because Atlas had no legal rights to request the

employees’ DNA. There have not been many cases filed under GINA for two different reasons.

Primarily, the law serves as a substantial deterrent for genetic-based discrimination. Because the

8
Areheart and Roberts 2019. 4
9
Smith 2020
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law came into effect before employers had the option to administer or request genetic testing on

employees, GINA blocked the thought before it manifested. Therefore, no cases were filed.

Secondly, not many people who believe their privacy was violated know about the law and their

rights…or they file suit under ADA.

GINA has been in effect for thirteen years. The law is currently limited to genetic-testing-

related issues concerning employees and their employers and insurance coverage. However, with

technology emerging faster than laws, GINA’s unintentional privacy protection component has

great relevance in today’s world. The law’s potential, and any future regulations that may stem

from it, offers Americans the ability to regain confidence in autonomy and a right to privacy. In a

romanticized approach, GINA is the twenty-first century Civil Rights Law.

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Bibliography

Areheart, Bradley A., and Jessica L. Roberts. 2019. Review of GINA, Big Data, and the Future

of Employee Privacy. The Yale Law Journal 128 (544-871): 710–790.

https://www.yalelawjournal.org/feature/gina-big-data-and-the-future-of-employee-

privacy.

“Darby v. Childvine, Inc., No. 1:18-Cv-00669, 2019 BL 447288, 2019 AD Cases 447288 (S.D.

Ohio Nov. 20, 2019), Court Opinion.” n.d. Www.bloomberglaw.com. Accessed

December 10, 2021.

https://www.bloomberglaw.com/public/desktop/document/Darby_v_Childvine_Inc_No_

118cv00669_2019_BL_447288_SD_Ohio_Nov_20?1639533530.

“Genetic Information and the Workplace.” 2012. Genome.gov. 2012.

https://www.genome.gov/10001732/genetic-information-and-the-workplace-report.

Lowe v. Atlas Logistics Group Retail Services (Atlanta), LLC, 102 F. Supp. 3d 1360, 51 NDLR

P 27 (N.D. Ga. 2015)

Smith, Paige. 2020. “Genetic Bias Law Has Worked Perfectly, or Maybe Not at All.”

News.bloomberglaw.com. January 15, 2020. https://news.bloomberglaw.com/daily-labor-

report/genetic-bias-law-has-worked-perfectly-or-maybe-not-at-all.

“There Will Be Little Privacy in the Workplace of the Future.” 2018. The Economist. March 28,

2018. https://www.economist.com/special-report/2018/03/28/there-will-be-little-privacy-

in-the-workplace-of-the-future.