Disclosure of Genetic Information

On Aug. 25, 2017, Gov. Rauner signed SB 0318, enacting Public Act 100-0396. This law, amending the Illinois Genetic Information Privacy Act (IGIPA), prohibits an employer from penalizing an employee who does not disclose his or her genetic information or chooses not to participate in a program requiring disclosure of the employee’s genetic information.

As background, under the IGIPA, employers must treat genetic information and testing in such a manner that is consistent with the requirements of federal law (e.g., GINA, the ADA, Title VII of the Civil Rights Act, the FMLA, etc.).

GINA defines “genetic information” as information about an individual's genetic tests, about the genetic tests of an individual's family members, or about the manifestation of a disease or disorder in an individual's family members. Genetic information includes any request for, or receipt of, genetic services (including genetic testing, counseling or education), or participation in clinical research, which includes such services, by the individual or family member. Genetic information also includes genetic information of any fetus carried by an individual or by a pregnant woman who is a family member, as well as genetic information of any embryo legally held by an individual or family member who is utilizing assisted reproductive technology. Genetic information does not, however, include information about the sex or age of any individual, or information about the race or ethnicity of the individual or family members that is not derived from a genetic test.

GINA defines a “genetic test” as “an analysis of human DNA, RNA, chromosomes, proteins or metabolites, which detects genotypes, mutations or chromosomal changes.” The final regulations contain many examples of tests that fall within this definition. Also included in the regulations are examples of tests or procedures that are not genetic tests, among which are complete blood counts, cholesterol tests, liver-function tests, and alcohol and drug tests.

This amendment of the IGIPA is important because, under the current IGIPA, employers are generally prohibited from using genetic information or genetic testing in furtherance of a workplace wellness program benefiting employees, unless four conditions are met. Now, an employer cannot penalize an employee who does not disclose his or her genetic information or chooses not to participate in the program if it requires such disclosure.

In order to ensure compliance with IGIPA and the requirements of federal law, employers should take various actions, including, but not limited to, reviewing their group health plan design, provisions and administrative procedures.

The law is effective Jan. 1, 2018.

Public Act 100-0396 »