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News Every Day |

Close loophole on genetic discrimination in insurance

Gov. JB Pritzker envisions Illinois as a leader in life-science investment and jobs, highlighted by the $1.5-billion partnership announced in March with the biotherapeutics company CSL.

Breakthroughs from this type of work could equal lifesaving care but may remain unobtainable for many Illinoisans due to a lack of protections against genetic discrimination in insurance markets.

Genetic discrimination occurs when individuals are penalized for genetic risks, even if they never develop said condition. The federal Genetic Information Nondiscrimination Act protects Americans’ health insurance and employment. No such safeguards exist for life, disability or long-term care insurance.

Genetic testing is now an integral part of healthcare. This gap in protections creates a significant barrier to care. In fact, studies show that fear of insurance discrimination is a top reason patients decline genetic testing, a well-founded fear as shown in a 2025 study: 21% of the participating genetic counselors reported a patient denied life insurance based on genetic testing results alone.

With skyrocketing healthcare costs, the use of genetic testing in medicine can shift the state’s health care burden from expensive, reactive treatment to more affordable, proactive treatments. This doesn’t just save lives; it puts money back into Illinoisans' wallets rather than the $22 billion coffers of the insurance industry.

The Illinois Senate introduced new legislation, Senate Bill 2799, to help protect Illinoisans’ genetic information from being used in life insurance, long-term care insurance and disability insurance policy determinations — the very safety nets that are critical for families.

For years, similar consumer protections have been blocked by claims of financial harm to the insurance industry — claims that lack empirical support. Other states, including Florida, have passed similar laws without seeing dramatic premium increases, according to 2024 data from the National Association of Insurance Commissioners.

Crucially, the Illinois bill does not prevent insurers from using a clinical diagnosis; it only prohibits the use of theoretical genetic risks. Genetic data is nuanced and requires specialized medical expertise to interpret. Allowing nonmedical professionals, like insurance brokers, to use this complex information to make life-altering financial decisions is scientifically unsound.

If Illinois is to remain a global biotechnology leader, our laws must protect the consumers driving that innovation. Passing legislation ensures the future of medicine in our state is defined by growth and privacy, not fear.

Rachel Campagna, president-elect, Illinois Society of Genetics Professionals

Give us your take


Send letters to the editor to letters@suntimes.com. To be considered for publication, letters must include your full name, your neighborhood or hometown and a phone number for verification purposes. Letters should be a maximum of approximately 375 words.

Stepping up for neighbors

WBEZ's Chip Mitchell's story on Isabel Conde that ran in Sunday’s Sun-Times was deeply moving. A caring person, she stepped in and helped save a family. She is one of Chicago’s finest.

Since Ms. Conde gave so much of herself to others, can the rest of us in Chicago return the favor? She is going to grad school. She must have expenses. If the Sun-Times or some other organization could set up a fundraiser, I would be happy to contribute.

William Dodd Brown, Lincoln Square

Kind act in dark times

Three homeless kids walking in a park, taken in by a stranger when their mother is detained by immigration agents: priceless.

The "Un"-United States of America: Shameful.

Sandra Minor, McHenry

No American immune to gun violence

I agree with Mr. Tom Weitzel. We are living in a time of lawlessness and little accountability. I sympathize with the extremely dangerous job police officers have and can't imagine facing such a heavily armed public. As of April, 82 officers have been shot this year, according to Mr. Weitzel. Gun Violence Archive data shows that 72 children newborn to 11 years old, and 278 teenagers 12-17 have been killed in shooting incidents this year.  Unlike policing, growing up in the United States shouldn't be such a dangerous activity.  When will we confront this shameful reality?

Sharon Marzano, Edgewater

Low ‘Spirit’

The latest victims in President Donald Trump's unconscionable war against Iran? The 17,000 hardworking Americans who are now former Spirit Airlines employees. Trump's ill-advised foreign adventure drove jet fuel prices up to such a high level that Spirit could no longer sustain operations. How many more American workers will find their lives and careers being destroyed in the coming months as a result of Trump's criminal incompetence?

Chet Alexander, Alsip

Papal pleasantries

Chicagoan: Leo, how about them White Sox ?
Pope: I am very pleased with their progress.
Chicagoan: Leo, wadda ya think about Donald Trump and JD Vance dissin' you ?
Pope: I care not. I preach the Gospel.
Chicagoan: But Leo, they're warnin' you about what to say about world politics and religion.
Pope: Their comments are inane and have the impact of a flea on an elephant's hide.
Chicagoan: OK, Leo, but remember, if there's any trouble, I got a guy.
Pope: No need, I have billions of the faithful in my corner.
Chicagoan: That's great, but if it ain't enough you can always call on me.
Pope: No worries. I've got the chief Guy.

Philip S. Witt, Northbrook

Would be more jazzed to see concert live

I appreciated Erica Thompson's reporting in Monday's Sun -Times on the UNESCO International Jazz Day Global Concert that took place last week at the Lyric Opera House. I watched the livestream with great joy on my home computer. What is really "sticking in my craw," so to speak, were the number of empty seats on the main floor when the cameras panned across the audience. Everything that I read or heard prior to the performance indicated that all seats were accounted for and the general public could watch the livestream. As a senior citizen and lifelong Chicago jazz fan, I would have happily filled one of those empty seats!

Rocco P. Lotesto, Uptown

Ria.city






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