What Is Genetic Discrimination, and How Can It Affect Us?

Specialty Pharmacy TimesSeptember/October
Volume 9
Issue 6

Genetic discrimination occurs when people are treated differently by their employer or insurance company because they have a genetic mutation that causes or increases the risk of an inherited disorder or they have a familial history of a specific health condition.

According to the National Institutes of Health (NIH), genetic discrimination occurs when people are treated differently by their employer or insurance company because they have a genetic mutation that causes or increases the risk of an inherited disorder or they have a familial history of a specific health condition. Surprisingly, this issue could determine whether someone gets hired or fired and could mean the difference between receiving comprehensive coverage.

Why should you care about this? Each of us has differences in our genetic code that could either increase or decrease the possibility of developing a chronic disease such as diabetes. These diseases are expensive for the health care system, and although nothing in our genetic code guarantees that these diseases will eventually manifest, our genes could determine the level of probability that some could. This is where the issue of genetic discrimination rises.

Many people turn to the Genetic Information Nondiscrimination Act (GINA) for protection against this type of discrimination. Title I of GINA prohibits genetic discrimination in health insurance, and Title II prohibits genetic discrimination in employment.

Under the first part of the act, it is illegal for health insurance providers to use or require genetic information to determine whether a person is eligible for coverage. The second part prohibits employers from using a person’s genetic information in making decisions about hiring, promotion, and various other terms of employment.

However, GINA and similar laws do not protect individuals from genetic discrimination under every circumstance, such as an instance in which an employer has fewer than 15 employees. The act also does not apply to those serving in the military or those insured under the Veterans Health Administration or Indian Health Service. Furthermore, the act does not protect against genetic discrimination in other forms of insurance, including life, disability, and long-term care, according to the NIH.

As the specialty drug market continues to grow, expensive chronic diseases such as diabetes are projected to hit the health care system hard. The CDC’s 2015 statistics show that 30.3 million individuals in the United States have diabetes, yet only 23.1 million are aware they have the disease. The data also show diabetes is the seventh-leading cause of death in the United States. Could expensive diseases such as diabetes affect how patients are treated by insurance or even human resources?

To help demonstrate the potential impact of genetic discrimination on an individual level, the American Diabetes Association has highlighted a number of cases in which diabetes has affected the lives of those with this disease in the workplace. In Kemp v JHM Enterprises, a human resources employee with type 1 diabetes, John Kemp, had a diabetic episode while traveling on the job just days after being hired. Because of his low blood glucose level, he was sweating, acting a little strange, and unbuttoning his shirt to show his medical alert tag while unable to communicate. He was fired from JHM Enterprises the next day for inappropriate and unprofessional conduct. The defendant’s motion for summary judgment was denied, as Kemp’s diabetes was a disability under the Americans with Disabilities Act of 1990, in addition to being qualified work, and he was terminated because of his disability.1

In Kapche v Holder, also cited by the American Diabetes Association, plaintiff Jeff Kapche had type 1 diabetes and was reliant on insulin injections. He was denied employment by the Federal Bureau of Investigation because of his diabetes, a violation of the Rehabilitation Act of 1973. The government appealed the trial court’s finding that Kapche had a disability, while Kapche argued against the district court’s ruling of the denial of front pay on after-acquired evidence; however, the circuit court affirmed the lower court’s judgment.2

Both cases exemplify the existence of genetic discrimination for employees.

How has the human resources industry adapted to this? The Society for Human Resource Management (SHRM), the world’s largest human resources professional society, has made several inquiries over the years regarding clarification of GINA. Shortly after GINA was enacted in 2008, SHRM and other interested stakeholders asked the Equal Employment Opportunity Commission (EEOC)—which was in charge of implementing the rule—to clarify whether the law would apply only to instances in which there was an intentional request made by an employer or the employer required or purchased an applicant or employee’s genetic information.

In 2010, the EEOC issued applicable regulations, but these regulations raised more issues regarding privacy, such as spousal participation in employer wellness programs. This caused the EEOC to issue a new proposed rule in 2015 to address these concerns, which revealed GINA’s delicate regulatory balance with other existing laws, including the Americans with Disabilities Act of 1990 and the Health Insurance Portability and Accountability Act of 1996.

In 2017, Rep. Virginia Foxx (R-NC) introduced bill HR 1313, which seeks to clarify rules related to nondiscriminatory workplace wellness programs.

“Employee wellness programs have long enjoyed bipartisan support because they result in lower health care costs and a healthier workforce,” Foxx said in a press release. The legislation “will ensure employers have the legal certainty they need to offer this innovative benefit, which provides working families with greater control over their health care dollars.” Regulatory clarity is needed because of actions taken by the EEOC that are contradictory to the Affordable Care Act and the rules promoted under it by the Obama administration, according to Foxx.3

The proposed bill exempts workplace wellness programs from (1) limitations under the Americans with Disabilities Act of 1990 on medical examinations and inquiries of employees, (2) the prohibition of collecting genetic information in connection with issuing health insurance, and (3) limitations under the Genetic Information Nondiscrimination Act of 2008 on collecting the genetic information of employees or family members of employees. This exemption applies to workplace wellness programs that comply with limits on rewards for employees participating in the program.

Although GINA continues to evolve on the federal level, what type of policy is occurring within state government? The earliest state laws focused on particular genetic conditions. For example, North Carolina was the first state to prohibit discrimination based on the presence of the sickle cell trait. In 1991, Wisconsin was the first state to prevent wholesale discrimination based on genetic tests.

At present, 48 states and the District of Columbia have passed laws preventing genetic discrimination by health insurance providers. Mississippi and Washington are the only states that have not passed such laws. Thirty-five states and the District of Columbia also prevent genetic discrimination in employment.4

Some states have passed laws that go beyond the scope of GINA to prohibit genetic discrimination for life insurance, disability insurance, and long-term care insurance. In 2011, California passed the California Genetic Information Nondiscrimination Act, which extends protections even further to prohibit genetic discrimination in emergency medical services, housing, mortgage lending, education, and other state-funded programs. At present, 17 states have additional laws restricting the use of genetic information in determining coverage for life insurance, 17 states for disability insurance, and 8 states for long-term care insurance.5

Many people may be deterred from participating in research or undergoing genetic testing for fear of genetic discrimination. With the protection of GINA and the addition of laws mandated on the state level, individuals can feel more comfortable about getting genetic testing done, which can prove to be highly beneficial for medical reasons and lifestyle decisions.

This genetic information, such as knowledge of the risk for chronic diseases like diabetes, can assist in allowing individuals to better understand health conditions that run in their family and be better informed regarding the risks for developing certain health conditions themselves. With that knowledge, individuals and their health care providers can establish a more individualized approach to prevention, healing, treatment, and care.


1. Kemp v. JHM Enterprises http://www.diabetes.org/assets/pdfs/living/know-your-rights/kemp-distirct-court-opinion.pdf

2. D.C. Federal Court Rules People with Diabetes Cannot be Denied Employment Based on Disease Management. http://www.diabetes.org/newsroom/press-releases/2009/dc-federal-court-rules-2009.html

3. Would Proposed Law Require Genetic Testing for Employees? Miller S. March 21, 2017 https://www.shrm.org/resourcesandtools/hr-topics/benefits/pages/would-law-require-genetic-testing.aspx

4. Genetic Discrimination and Other Laws. National Institute of Health, National Human Genome Research Institute. https://www.genome.gov/27568503/genetic-discrimination-and-other-laws/

5. Ibid.

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