Health Care

Legislature considers whether life insurers should have access to genetic information

Sen. Ginny Lyons, D-Chittenden, right, in 2019. File photo by Glenn Russell/VTDigger

Home DNA tests have grown increasingly popular in recent years, offering consumers a glimpse into the disease markers that may lurk in their genetic material. 

Industry giants, including 23andMe and Ancestry Health, screen for genetic predisposition to anything from Type 2 diabetes to celiac disease to breast cancer, often under the assumption that knowledge is power. 

But what if that knowledge could mean you can’t get life insurance or health insurance coverage? Vermont lawmakers plan to consider the issue later this week in a bill that would prohibit genetic discrimination. 

The bill, S.247, would prevent insurers from denying coverage to people based on genetics. The federal Affordable Care Act and the Genetic Information Nondiscrimination Act already offers some protections against health insurers denying coverage based on disease genes, but the bill would take those laws a step further by adding similar prohibitions for life insurance, said Sen. Ginny Lyons, D-Chittenden, who is co-sponsoring the bill.

“We won’t know the answer to a lot of the implications of our genes for many years, but right now, it's important to allow for people to use and have their genetic information looked at with their health care providers without discrimination,” Lyons added.

If the bill passed, Vermont would be one of a handful of states with laws that limit how life insurance companies use genetic information. 

Some genetic tests may offer valuable clinical information to guide treatment decisions, according to Dr. Tim Lahey, director of medical ethics at UVM Medical Center in Burlington. But patients may not know or understand how the information might affect their coverage. 

Patients with a family history of breast cancer may want to know about their genetic risk so they could decide whether to get preemptive surgery. Relatives of a person with Huntington's disease, a rare and progressive breakdown of nerve cells in the brain, also may choose to get tested for family planning reasons. 

But for life insurers, that information could be a red flag because of the potential for an early payout on a policy. Life insurers already factor in information on family history, smoking status and weight in their pricing.

These implications may not be immediately obvious to the average person, Lahey said.

“What we don’t want people to do is to get kind of snookered in by an opportunistic genetic testing company that leads to decades of deprivation of medical insurance,” he said. “That’s too big a risk.”

Some consumers choose to be tested privately to evaluate their risk of diabetes or heart disease, under the assumption that the information would remain private. But there’s always a risk that life and disability insurers would obtain and use that information down the road. Lahey pointed to the use of a commercial DNA database to capture the Golden State Killer in 2019. 

“So you can imagine, unexpected access to commercial genetic testing might also lead in this direction,” he added. 

S.247 is expected to be reviewed by the Senate Committee on Finance on Wednesday afternoon.

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Liora Engel-Smith

About Liora

Liora Engel-Smith covers health care for VTDigger. She previously covered rural health at NC Health News in North Carolina and the Keene Sentinel in New Hampshire. She also had been at the Muscatine Journal in rural Iowa. Engel-Smith has master's degrees in public health from Drexel University and journalism from Temple University. Before moving to journalism, she was a scientist who briefly worked in the pharmaceutical industry.

Email: [email protected]

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