Close loophole on genetic discrimination in insurance

Gov. JB Pritzker envisions Illinois as a leader in life-science investment and jobs, highlighted by the 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

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