In 2008, Congress recognized scientific advances in the field of genetics and feared these advances would give rise to misuse and discrimination based on genetic information. This led to the passing of the Genetic Information Nondiscrimination Act (GINA)
"GINA was prompted by scientific advancements in genetics and the decoding of the human genome." Ruth N. Mackey explained further in a recent BLR webinar. "If you watch CSI, or Law & Order, or any other crime procedural, you probably know that genetic information is a hot topic these days; not only to identify and capture criminals, but also as a diagnostic tool for preventative medicine." Mackey continued. "Perhaps from the CSI effect, Americans are not just excited about genetic information, but also trepidatious about how genetic information may be used."
It was in this context, and in an effort to protect our scientific advances, promote preventative healthcare, and alleviate the fears of the populous, that Congress passed GINA.
GINA Title I prohibits discrimination in group health insurance premiums, amending ERISA, the Public Health Services Act, and the Internal Revenue Code.
GINA Title II prohibits discrimination in employment by employers and other entities. It prohibits the use of genetic information in employment decisions, and prohibits the acquisition of genetic information. (Note that an employer's specific intent to get employee genetic information is not necessary to violate GINA by acquisition!). It also prohibits the disclosure of employee genetic information.
GINA Title II: What Information is Protected?
GINA Title II has many categories of protected information:
- An individual's genetic tests. "GINA protects what it calls a genetic test. And the EEOC defines genetic test as an analysis of human DNA, human RNA, chromosomes, proteins, or metabolites, that detect a genotype, mutations, and chromosomal changes. I know that's really technical, but it's important because not all tests qualify as genetic tests." Mackey explained.
- An individual's family members' genetic tests. This includes the items above, as well as a manifestation of a disease or condition in the employee's family members. In other words, the disease has been or could be diagnosed in a family member.
- An individual's family medical history.
- An individual's request for or receipt of genetic services. This might include the tests above, and also genetic counseling and genetic education.
- An individual's participation in clinical research where genetic services are used by the individual or the individual's family members.
- The genetic information of a related fetus or a legally-held embryo.
GINA Title II: What Information is NOT Protected?
Even with that comprehensive list, there are still some types of information that are not protected by GINA. For example, medical information about a manifested disease, disorder, or pathological condition is not protected. This seems to contradict the outline above, which can be cause for confusion.
Consider this example to clarify, in which an employee has been diagnosed with lupus: Lupus is an auto-immune disease. It is diagnosed through manifested symptoms as well as a genetic component. Once the disease is manifested, if an employer may acquire information about the manifested condition, then the information is not protected by GINA.
But any genetic information contained in that medical information is protected. So, medical information about the employee having lupus is not protected by GINA on its own, but any genetic tests that are included would be protected. That said, remember that the fact that the employees have a manifested illness may also be protected by other statutes, such as the ADA.
On the other hand, if this disease had been diagnosed for the employee's sister, that would be a manifested disease in a family member – which counts as family medical history. That information would be protected by GINA. In this example, the employer can receive information about an employee's disease if relevant, but not about the family's genetic propensity for or history of a disease.
This information was excerpted from the BLR webinar titled "GINA Enforcement for HR: Tips for Tackling This Emerging Compliance Hurdle." To register for a future webinar, visit http://store.blr.com/events/webinars.
Ruth Mackey is an associate in the Denver office of Fisher & Phillips LLP. Her practice centers on litigating claims brought under Title VII, the ADA, the ADEA, and the FLSA. Ruth has experience in tribal courts, state trial and appellate courts, and federal district court.