Genetic info would be shielded from life, disability, long-term care insurance under Nebraska bill
Feb 20, 2025 | 12:45 pm ET
LINCOLN — Brandi Muhle was 9 years old when her 35-year-old mother, an Omaha police officer and a marathon runner, was first diagnosed with breast cancer.
Muhle said her mother, Kamie K. Preston, never smoked or drank and was “the picture of perfect health.” Preston fought and won her first fight with breast cancer, her daughter said. But she was diagnosed again at the age of 38 and was given about a year to live.
It wasn’t until that second diagnosis that Kamie Preston was recommended genetic testing, and the family learned she had a genetic mutation — BRCA1 — that increased her risk of cancer.
Muhle remembers being in the hospital for her mother, who had been moved to hospice. Kamie Preston made Muhle and her siblings promise to have genetic testing when they were older to know their risk and do something about it. She died in July 2005 at the age of 40.
Five years later, Muhle, a 19-year-old full-time college student and waitress at a Mexican restaurant in Omaha, paid $700 out of pocket for the genetic testing and found that she had the same genetic mutation. She learned she had an 87% risk of 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 last week. “I was afraid of dying before I had anyone to leave behind.”
Genetic privacy protections
Muhle is one of many supporters of Legislative Bill 338 from State Sen. Dave “Woody” Wordekemper of Fremont, which seeks to expand access to and knock down one barrier of some people getting genetic testing: whether the results can be used in determining premiums or eligibility for life, disability or long-term care insurance.
Wordekemper’s LB 338, modeled after a law in Florida that passed in 2020, would shield such information from being used to limit, deny or set higher premium rates for such coverage. Nebraska would be the second state to pass such a law.
LB 338 would allow someone’s genetic information to be used by disability, life or long-term care insurers if the person seeking insurance has a specific clinical diagnosis. The legislation would not prevent such insurers from asking about family history or reviewing someone’s medical record, which might include someone’s genetic test results.
“It’s almost like you’re being penalized for being proactive and taking control and trying to be healthier,” Muhle said. “It’s like it would be better for me to bury my head in the sand.”
Health insurance already protected
The federal Genetic Information Nondiscrimination Act of 2008 already prohibits genetic information, and certain family histories from being used to determine or deny health insurance coverage. That law also protects genetic information in hiring, firing and salary decisions.
But as a “sacrifice,” life, disability and long-term care insurance were carved out, according to Lisa Schlager, vice president of public policy for Facing Our Risk of Cancer Empowered (FORCE). She said the federal law took 13 years to get over the finish line.
Wordekmper, a freshman lawmaker who retired earlier this month as a firefighter and paramedic, noted repeated firefighting and the gear he wore for 30 years can lead to certain genetic changes and increase risks of cancer due to prolonged exposure to “forever chemicals” like PFAS.
He said genetic screening shouldn’t be any different than a colonoscopy or a stress test for someone’s heart and that insurance companies should be happy that someone wants to take care of themselves. Wordekemper and others said that proactive action could reduce future health care costs.
“It’s monitoring your health, and so that shouldn’t be held against you,” he told the Nebraska Examiner.
However, three insurance organizations opposed the bill, and the chair of the Legislature’s Banking, Commerce and Insurance Committee, said insurance brokers need that information to properly assess someone’s “risk.”
‘Russian roulette’
The bill was introduced on behalf of Nebraska Medicine, which Wordekemper and supporters noted is already at the forefront of medical advances, particularly cancer research, while partnering with the University of Nebraska Medical Center.
Tiffany Joekel, testifying on behalf of Nebraska Medicine and the Nebraska Hospital Association, said she understood lawmakers are “threading a needle” of what information insurers need to determine “risk.”
However, Joekel and others said some people are deciding against getting genetic screening because of insurance, which Joekel described as having a “chilling effect.”
Bronson Riley of Lincoln, a cancer genetic counselor since 2006, said that when he explains the protections for medical insurance, but not life, disability or long-term care insurance, the “enthusiasm” among some patients “shifts to fear.”
“Many pause, reconsider or decide to delay testing until after purchasing insurance, delaying or even forfeiting life-saving information,” Riley testified.
Schlager, who like Muhle and many involved with FORCE has the BRCA1 genetic mutation, said her organization has worked with many people who refused or delayed testing as a result.
“Meanwhile, they’re playing Russian roulette with their health,” she said.
Empowerment
Dr. Kelsey Klute, a renowned oncologist at Nebraska Medicine with clinical expertise in gastrointestinal tract cancers, including colorectal and pancreatic cancer, said genetic screening is especially relevant for young people. Younger people, she said, are balancing whether to get testing or wait, though every second might matter.
Klute is also the medical director of Nebraska Medicine’s Cancer Risk and Prevention Clinic. She said having the information tends to improve people’s overall health because people are empowered to take proactive steps to improve their lives.
Some patients, Klute said, also become a spokesperson for family or their communities to encourage others to get tested and be proactive with their health.
“Oftentimes they know more about this mutation than many of the physicians or nurses taking care of them, and in some ways, they can kind of become an educator to their health care team,” Klute told the Nebraska Examiner. “As a health care provider, my hope is that people can access this with less and less barriers.”
Klute said she often recommends that patients discuss genetic testing with a genetics counselor who can recommend getting insurance before such screening. Many testifiers said that they got life insurance young, including Muhle, before starting the process.
When we know our risk, we can act upon it. We can change the course of our families for generations to come.
– Brandi Muhle, founder of the Kamie K. Preston Hereditary Cancer Foundation in Omaha
Schlager said the lack of genetic information can also hinder early detection efforts, which is critical for some cancers and diseases.
That information, she said, might also be vital to finding future interventions to mitigate the risk of disease, including some with no known cure — Lou Gehrig’s disease (ALS), Alzheimer’s disease, Parkinson’s disease or Huntington’s disease.
Assessing someone’s ‘risk’
Opposing the legislation was Robert M. Bell, executive director for the Nebraska Insurance Federation; Alex Young, legislative director at the American Council of Life Insurers and Matt Holman, assistant general counsel for Ameritas Life Insurance Corp. in Lincoln.
Bell said the opposition lies in “adverse selection.” He said that shielding the genetic information would increase premium costs for others in the “risk pool.”
State Sen. Mike Jacobson of North Platte, who chairs the committee considering the bill, asked Bell if someone who finds they have a genetic mutation, like Muhle, takes steps to mitigate their risk if that would similarly impact their insurance.
“I hate to say definitely, but I believe the answer is, yes, because we underwrite risk,” Bell responded.
He added later: “If you take proactive steps to mitigate that risk, and can prove it to the insurance company, that changes the underwriting on it.”
Bell said genetic information might also work both ways, such as if someone has a family history of cancer or another disease but they don’t have the genetic marker.
A form of discrimination?
Multiple testifiers, including Muhle, asked the committee to end what they described as genetic discrimination.
For example, Dr. Alan Thorson, a retired colon and rectal surgeon and past president of the Nebraska Cancer Coalition, said genes are “special.” Unlike someone’s “risk” determined from smoking or drinking, Thorson said “genes are life” and are not chosen.
“To take this group of people and discriminate against them simply because ‘life,’ I think is wrong,” Thorson said, adding that genetic testing has helped patients prevent colorectal cancer.
Jacobson at one point told a testifier that he wasn’t sure if someone has a right to life insurance, telling the person: “If that’s discriminatory, it’s part of the business practice.”
“I compare it to playing poker, and one person knows what the hole card is and the other person does not, they tend to have a little bit of an advantage in terms of the odds of winning,” Jacobson told Wordekemper. “Life insurance is all about predictability and odds and life expectancy.”
Wordekemper, who serves on Jacobson’s committee, told him genetic testing is about a person’s health.
“It’s certainly not a foregone conclusion that you’re going to die because of that gene,” he said.
Insurance impacts
State Sen. Eliot Bostar of Lincoln, who led a 2024 law to increase privacy protections for at-home genetic tests, such as 23andMe, asked Bell to consider if everyone got genetic screening whether average life expectancy would go up or down.
Once Bell said he didn’t know, Bostar said it’s not a hard decision to ponder and that current practice, even in a small way, is holding lifespan down. He said life insurers might benefit from longer life expectancy.
“Should we, in the interest of life insurers, pursue this?” Bostar asked.
“Well, I think the answer is no,” Bell responded.
I compare it to playing poker, and one person knows what the hole card is and the other person does not, they tend to have a little bit of an advantage in terms of the odds of winning. Life insurance is all about predictability and odds and life expectancy.
– State Sen. Mike Jacobson of North Platte, chair of the Legislature’s Banking, Commerce and Insurance Committee
State Sen. George Dungan of Lincoln told Bell he viewed the bill as a “paradox” because insurers were already underwriting people who had the genes, with potential for negative consequences, but some people just didn’t know it.
“It sounds like an adverse decision is being made based on literally nothing changing, except for knowledge,” Dungan said.
Bell responded that someone’s financial behaviors might change if they know they have a genetic mutation, such as how much or what types of insurance they buy.
Upon questioning, Bell said he didn’t know much about the impact on Florida after lawmakers passed a first-in-the-nation law to shield genetic information from more life, disability and long-term care insurance.
However, Wordekmper and his staff as well as 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.
Riley, the cancer genetic counselor, said protecting genetic privacy while maintaining a strong insurance market can coexist.
Family dynamics
In her mother’s honor, 10 years ago this month Muhle and her family founded the Kamie K. Preston Hereditary Cancer Foundation in Omaha, which pays for cancer genetic testing when it is not covered by insurance, Medicare or Medicaid.
Muhle, now 33 years old, has gone through multiple preventative steps, including a mastectomy, to reduce her risk of breast cancer from about 87% to less than 2%. She got life insurance when she was young but echoed Riley that many people who go in for genetic testing come in after a loved one has died a “horrific death,” and they’re looking at their family history.
“When you have these mutations, a lot of times it is like cancer has plagued your family,” Muhle said. “You’re looking at that family tree and you’re like, ‘She had cancer. She had cancer. When is it my turn?’”
Denise Ibsen Cole of Omaha also testified in support. She serves on the Hereditary Cancer Foundation board, is positive for the BRCA1 mutation and founded the annual 26.2 Step Mini Marathon that similarly seeks to raise awareness of high-risk cancers and genetic testing.
Ibsen Cole said her children were 7 and 9 years old when she learned about her BRCA 1 status.
“I knew I would take whatever means not to leave them orphans,” Ibsen Cole said.
‘Change the course’
Muhle is similarly looking ahead for her almost 12-year-old son, Peyton. She said some people are scared of the wrong diagnosis, more about the mutation than the cancer itself.
Breaking down barriers would be “huge,” she added, and could help more people “change the script.” She noted she could die in a car accident at any time, with no connection to cancer.
“When we know our risk, we can act upon it. We can change the course of our families for generations to come,” Muhle testified. “Please don’t penalize us for obtaining the knowledge that gives us the tools to be proactive with our health.”
The committee had not yet taken action on Wordekemper’s bill as of Thursday morning.
This article was originally published by News from the States.