Personal Genetics Education Project

What is genetic discrimination?

Genetic discrimination is the unfair treatment of individuals or groups of people based on real or perceived genetic conditions, genetic pre-dispositions, genetic risk factors related to health and disease traits, or ancestry. pgEd has developed an extensive array of materials, many of which are included below, to provide information to those looking to understand the issues, to those wanting to teach about them, as well as resources for if you believe you have a claim of genetic discrimination.

Are there any laws to prevent genetic discrimination?

In 2008, the Genetic Information Nondiscrimination Act (GINA) was enacted in the United States to protect people from genetic discrimination by employers and health insurance companies. The law – often called GINA – has two main provisions. First, it forbids employers to use genetic information to make decisions about hiring, firing and promotion. Second, GINA forbids group and individual health insurers from using genetic information to adjust premiums, add or drop people from policies or deny coverage. GINA protects a person’s genetic information revealed when seeking genetic testing or participating in a research study. It also protects a person’s family medical history, including a family member’s genetic information. For example, an employer can not legally ask an employee if Huntington’s Disease runs in his or her family. This law provides a path of legal recourse for people who believe they have experienced genetic discrimination.  The law is enforced by the U.S. Equal Employment Opportunity Commission. GINA has a number of limitations, however. It does not cover people serving in the military (they are covered elsewhere) or extend protections to those seeking life or long-term disability insurance (click here to see a 2014 article on this by Melissa Healy in the LA Times).

Many hope the passage of GINA will advance medical research in addition to protecting people’s civil rights. GINA also recognizes that a key to genetic research is for people to be willing to participate and feel confident in sharing their DNA with scientists. Only a few cases of genetic discrimination received prominent media attention in the years leading up to the passage of GINA, many of which woven throughout highlighted in pgEd’s curriculum. “Genetics, jobs and your rights” contains many specific examples of court cases and lawsuits over the years that are related to genetic discrimination, and asks readers to consider multiple perspectives on these matters.

In 2017, a bill working its way through the US Congress proposes to allow employers to require employees to undergo genetic testing and disclose the results, as part of “voluntary” workplace wellness programs; employees who refuse could potentially have to pay significantly more in health insurance premiums. Opponents of this proposal, including the American Society of Human Genetics, argue that the bill will seriously undermine the protections provided by GINA. Check back here for updates as pgEd follows this legislation’s continued development.

Real cases

An early example of employers and employees struggling with the use of genetic information in the workplace is the Burlington Northern Railroad case. Gary Avary is a railroad worker, who hammered railroad ties for many years. Avary was having arm and hand pain that he thought was carpal tunnel syndrome caused by years of repetitive tasks on the job. Avary filed a workers’ compensation claim, and the company sent him to a doctor for an exam. He later learned he was genetically tested without his knowledge. The test itself was controversial as the role of genetics in carpal tunnel syndrome is unclear; although the test was intended to look for a genetic predisposition to carpal tunnel syndrome, it actually looked at a genetic marker linked to a rare medical condition, one symptom of which resembles carpal tunnel syndrome. The employer was accused of trying to use the genetic test to prove that the worker had a pre-existing condition as a reason to deny the workers’ compensation claim. The case was settled in favor of Gary Avary. GINA seeks to ensure that workers are comfortable coming forward with workers’ compensation claims knowing their genetic privacy is protected.

The first GINA-related case that was resolved in court was concerned with whether employers can collect DNA from employees in order to resolve a situation of misconduct. In this so called “Devious Defecator” case, the legal issue started when a grocery warehouse company realized it had an employee who began “habitually defecating in one of its warehouses.” To solve the mystery, the company requested some of its employees submit to cheek swabbing to compare their cheek cell DNA to DNA from the “offending fecal matter” left in the warehouse. The two men whose DNA was requested in the company’s investigation sued under the GINA provision that forbids an employer from requesting or requiring employee DNA. pgEd had been following the case ever since Dr. Nita Farahany (bioethics and legal expert, and sister of the prosecutor) spoke about it at our October 2014 Congressional briefing on GINA. At the end, a federal jury awarded the plaintiffs, Jack Lowe and Dennis Reynolds, $2.2 million in damages.

Narcolepsy is a sleep disorder that causes excessive sleepiness and frequent daytime naps, called sleep attacks. It has a genetic component in addition to environmental factors; it may be an autoimmune disease. It is a condition that is varied and complex, with some people responding well to medication while others do not. In this case, Kenya Madden, police dispatcher, disclosed a medical condition, narcolepsy, for which she was being treated and, as a result, was fired. The case was settled with a payment to the employee. It is important to note that in this case, the employee had been living with narcolepsy, and the genetic factors related to her specific case are not mentioned in the story. As such, this case is more likely to fall under other federal anti-discrimination laws, rather than GINA. Employers and employees looking for even more information about GINA might appreciate the FAQ from Genetic Alliance.

Join Rep. Louise Slaughter and take our quiz on GINA!

In 2014,  a small percentage of the US population is aware of GINA and its protections. About 20% of Americans are aware of the law, and only 55% of doctors! Check out the video (below) from Representative Louise Slaughter, one of the authors of GINA and then be counted. Take a short quiz on GINA and pin yourself on our world map!


Related lesson plans:

Genetics, jobs and your rights