Life insurance group says consumer protections are included in 2000 law
March 10, 2026…..In 2013, Robyn Biggs’s aunt tested positive for a genetic mutation that increased her risk of breast, ovarian, pancreatic and other cancers.
Since her father had died of cancer, and her aunt carried the mutation, Biggs said she had a 50% chance of carrying it, too. But before getting tested for the BRCA2 gene, she sat down with a genetic counselor.
“She gave me advice I’ll never forget. She said, ‘Secure life insurance now, before you get tested.’ Once I knew my genetic status, that information could potentially be used against me,” Biggs told lawmakers at a legislative hearing Feb. 24. “At the time, I was a 39-year-old single mother of two. I asked myself, ‘Do I learn this information that could help protect me, or do I delay testing and financially secure my family?'”
Biggs, a biotechnology scientist who works with genetically defined diseases, immediately got tested and learned that she also carried the gene, she testified to lawmakers. She has since undergone preventative surgeries and changed her lifestyle to address it, and to try to live as long as possible for her kids.
The federal Genetic Information Nondiscrimination Act prevents health insurers and employers from discriminating against a person based on their genetic information, Rep. Dave Rogers told the Financial Services Committee, but it does not cover all situations.
“The federal law does not cover life insurers, long-term care or disability insurers — so there’s a gap in the law,” he said. “Therefore, some Massachusetts residents choose to forgo genetic testing, even though they might have a strong family history of certain cancers, because they’re fearing discrimination based on their genetic testing.”
A Rogers bill (H 5112) aims to close that gap by prohibiting those insurers from engaging in “discrimination” based on genetic testing results. It defines discrimination as “the cancellation, refusing to issue or renew, charging any increased rate, restricting any length of coverage or in any way practicing discrimination against persons.”
If a person chooses to submit genetic information in an insurance application, or if genetic information is in their medical records, the insurer would be barred from using that information to set the terms of their policy, according to bill. The bill also enables the commissioner of insurance to look into violations.
Asked if there’s data about how often insurers are restricting or refusing coverage, Rogers said, “That’s tough to tell you – that’d be getting data from insurance companies essentially admitting that they were denying coverage based on a genetic test.”
The group Facing Our Risk of Cancer Empowered (FORCE), a national nonprofit advocating for people with or at risk of hereditary cancers, worked on the bill. According to information from FORCE that Roger’s office shared with the News Service, the group does not have statistics on the matter. While many people have expressed concerns about discrimination, the organization said, they “understandably are not willing to be public about these concerns because it would call attention to them and their families.”
Biggs’ thought process is not unusual for those who are similarly weighing genetic testing for ALS, according to ALS Association Managing Director of Policy Lindsay Jack.
“We routinely hear from individuals who delay or avoid genetic testing because they fear the results could be used against them by life, long-term care or disability insurers,” Jack said. “That fear is real and it creates an impossible dilemma: risk your physical health by not knowing or risk your financial security by finding out.”
Life Insurance Association of Massachusetts (LIAM) President and CEO Ed Donahue wasn’t available for an interview, but pointed to what he called “very solid consumer protections already in law” passed in 2000, which he said have governed insurer behavior on the issue for 25 years.
Among other provisions, LIAM wrote in a past position paper on the issue that the existing law prohibits health, life, long-term care and disability insurers from requiring applicants to take genetic tests as a condition of obtaining coverage. The law also doesn’t require applicants to answer any questions about genetic testing.
LIAM wrote that insurers and applicants need to “operate on a level playing field,” and that applicants who withhold information “unfairly tip the insurance scales in their favor by buying more insurance at favorable rates than they otherwise would have.”
The trade organization wrote that it’s critical for insurance companies to have “a complete and accurate risk profile” before coverage is issued, as underwriting is based on probability and requires accurate calculations.
According to FORCE Vice President of Public Policy Lisa Schlager, “insurers will tell you that they need this test information for the market to remain stable.”
“Genetic testing has only become available and more mainstream in the past 10 to 15 years, and insurers did just fine basing decisions [on] personal and family health history for hundreds of years before that,” Schlager said.
