Effective this year, a new state law prevents direct-to-consumer (DTC) genetic testing companies like 23andMe and Ancestry from sharing Illinoisans’ genetic data without permission. The amendment to the state’s Genetic Information Privacy Act adds a provision that limits how DTC test services can use data they collect from customers.
Sarnoff Center health education program manager Becca Bakal spoke with genetic counselors Shelly Weiss McQuaid and Sara Cherny about the new law. Both practice at the Ann & Robert H. Lurie Children’s Hospital of Chicago and serve on the Illinois Society for Genetic Professionals (ISGP) Executive Board. McQuaid also sits on the Board of Directors of the Norton & Elaine Sarnoff Center for Jewish Genetics.
This conversation has been edited for length and clarity.
Becca Bakal: Tell me about the new law in Illinois to regulate the use and sharing of genetic information.
Shelly Weiss McQuaid: The law focuses on information from DTC genetic testing, which is testing ordered by a consumer, not a clinician. It specifies that DTC test companies cannot share genetic information with companies making determinations about insurance, and essentially applies to life insurance and long-term care insurance. It does increase the protections in Illinois for individuals, but not as widely as protections that we hope to see in the future.
Bakal: What doesn’t the new law cover?
Weiss McQuaid: It doesn’t impact protection of any clinical genetic testing— the tests that we order for our patients as genetic counselors. So this law does not protect against the use of clinical genetic test results by life insurance and long-term care insurance companies.
Sara Cherny: There is a federal law, the Genetic Information Nondiscrimination Act (GINA), that provides some other protections. GINA prohibits employers and health insurance companies from discriminating based on genetic information in most cases. Even with GINA and this updated Illinois law in place, there is a possibility that [insurance companies] can ask about clinical genetic test results and then use that information to change pricing or deny coverage. We don’t know if they would do that, but some individuals choose to put the insurance protection in place before they ask the genetics question.
Bakal: I see. Does ISGP hope to address that issue?
Weiss McQuaid: Yes. Our ultimate goal is to be able to share with the patients we’re serving that there are no gaps in the protections from genetic discrimination. ISGP is working with our legislative counterparts and we hope to update the Illinois law. Several members of the ISGP are going to Springfield for DNA Day [April 25] to share what we do and start to plant seeds for this agenda.
Cherny: I think there are also opportunities to expand GINA. If you can get change at any level—in Illinois, federal legislation, or other states’ legislation—you can use those changes to build on each other. It is all about incremental change.
Bakal: What advice do you have for folks who might be considering genetic testing?
Weiss McQuaid: Pursue genetic testing with a licensed genetic counselor, as they will be able to share information about privacy laws with you proactively and answer any questions to help support your decision-making process. In general, genetic counselors can help you think about what information you are hoping to uncover with genetic testing and how you might use that information. Genetic testing is optional, and that is information someone should have as they are considering their options.
Cherny: Sometimes folks assume that if you’re coming to a genetic counselor, it is to obtain genetic testing. In actuality, genetic counselors are there to discuss benefits and limitations of genetic testing, and also to help an individual or family talk through their priorities. In some cases, this also includes thinking through how the laws might apply to their particular situation.
To learn more about ISGP, visit illinoisgenetics.org. To talk to the Sarnoff Center’s genetic counselor, contact us at (312) 357-4718 or firstname.lastname@example.org.
Picture credit: Jimmy Emerson, DVM