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.
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.
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.
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
To learn more about ISGP, visit illinoisgenetics.org. To talk to
the Sarnoff Center’s genetic counselor, contact us at (312) 357-4718 or
Picture credit: Jimmy Emerson, DVM