Nebraska Bill Seeks to Protect Genetic Information in Insurance
LINCOLN, Neb. – A proposed bill in Nebraska could restrict how insurance companies use genetic testing results when determining premiums and eligibility for life, disability, and long-term care insurance. Legislative Bill 338, introduced by State Sen. Dave “Woody” Wordekemper of Fremont, is modeled after a 2020 Florida law that shields genetic information from being used to deny or limit coverage or issue higher premium rates.
The bill’s supporters highlight the importance of genetic testing and the potential for discrimination. Brandi Muhle, whose mother died from breast cancer after being diagnosed with a BRCA1 genetic mutation, testified in favor of the bill. Muhle’s mother, Kamie K. Preston, was diagnosed with breast cancer at age 35; she had a second diagnosis three years later. After her mother’s second diagnosis, the family discovered the genetic mutation. Muhle, who also carries BRCA1, found that she had an 87% risk of developing cancer in her lifetime.
“At that point, I wasn’t afraid of who would be left behind if I died,” Muhle told the Legislature’s Banking, Commerce and Insurance Committee. “I was afraid of dying before I had anyone to leave behind.”
Wordekemper’s bill would allow insurers to use genetic information if a person seeking insurance has a specific clinical diagnosis but not to deny coverage or change premiums simply based on the results of genetic testing.
Balancing Privacy and Risk: A Central Issue
The core of the debate revolves around balancing the need for insurers to assess risk versus patients’ right to privacy and access to potentially life-saving genetic information. The federal Genetic Information Nondiscrimination Act of 2008 already protects against the use of genetic information in health insurance and employment decisions. However, life, disability, and long-term care insurance policies were excluded. Lisa Schlager, vice president of public policy for Facing Our Risk of Cancer Empowered (FORCE), explained the complex legislative history.
Bronson Riley, a cancer genetic counselor since 2006, testified that when he explains the current protections for medical insurance, but the lack of protection for life, disability or long-term care insurance, the “enthusiasm” among some patients “shifts to fear.”
The insurance industry, represented by organizations like the Nebraska Insurance Federation and the American Council of Life Insurers, opposes the bill. Robert M. Bell, executive director for the Nebraska Insurance Federation, argued that the bill could lead to “adverse selection,” where premiums increase for others in the “risk pool” if those with genetic risks are shielded.
State Sen. Mike Jacobson, chair of the committee, questioned whether the bill would alter the underwriting process, prompting a response from Bell acknowledging that proactive steps to mitigate risk could change underwriting conditions.
Addressing Concerns and Seeking Solutions
Supporters of the bill, including Muhle and Dr. Kelsey Klute, a renowned oncologist at Nebraska Medicine, emphasized genetic screening’s importance, particularly for preventing and managing cancer. Klute is the medical director of Nebraska Medicine’s Cancer Risk and Prevention Clinic. She emphasized patients’ empowerment to take proactive steps to protect themselves. Some patients also become advocates for their families. The lack of genetic information can also hinder early detection efforts, which is critical for some cancers and diseases.
State Sen. Eliot Bostar pointed out that if more people had genetic screening, overall life expectancy might increase, which could benefit insurers. State Sen. George Dungan viewed the bill as a “paradox,” since insurers are already underwriting people with genetic markers, whether they know about them or not.
Wordekemper and staff, along with Schlager, shared 2022 data from the National Association of Insurance Commissioners, which shows increases in insurance premiums remained below inflation. Florida’s insurance market also continued to rank high in availability, which they said suggested the privacy protections had no detrimental impacts.
Muhle, who founded the Kamie K. Preston Hereditary Cancer Foundation, and Denise Ibsen Cole of Omaha, who is also BRCA1 positive, support the bill. Ibsen Cole founded the annual 26.2 Step Mini Marathon that similarly seeks to raise awareness of high-risk cancers and genetic testing.
“When we know our risk, we can act upon it. We can change the course of our families for generations to come,” Muhle said. “Please don’t penalize us for obtaining the knowledge that gives us the tools to be proactive with our health.”
As of Thursday morning, the committee had not yet taken action on the bill.
