SCHAUMBURG, Ill. – To help ensure that private genetic test results are not used against consumers, state Rep. Michelle Mussman, D-Schaumburg, recently backed legislation that would forbid the disclosure of personal genetic information to insurance companies without consent from the individual.
“This is a matter of personal privacy that needs to be dealt with before it becomes part of a larger problem,” Mussman said. “People should feel free to test their DNA to learn about themselves without having to worry about how that information could be misused.”
The Mussman-backed House Bill 2189 updates the Genetic Information Privacy Act to state that at-home genetic results cannot be shared without written consent from the consumer. This law plans to prevent insurance companies from increasing or denying coverage for consumers based on any discovered information from the test. There is no current federal law that prohibits these companies from accessing a person’s private information from them. This legislation also includes provisions that prohibit employers from requiring genetic tests as a term of employment. The bill was signed by the governor and will take effect on Jan. 1, 2020.
“Our genetics are the blueprints to our entire body and our ancestral history, and the only people who should have access to it are those who have been authorized to,” Mussman said. “This bill is necessary in order to protect the privacy of consumers. Without protections to their privacy, health insurance or life insurance companies could look into the genetic history of a customer without their knowledge and discriminate against them. With this bill in place, written consent from the consumer is the only way for the sequencing companies to share the information individuals receive from genetic tests.”