For decades, public health officials have fretted about insurance companies having access to genetic testing and using the results to deny coverage or set higher rates for people likely to get certain diseases.
That was true even before people could casually send in a swab to a company like 23andme, AncestryDNA or Family TreeDNA, to be tested.
Those results end up in huge databases and can be purchased by other businesses.
If House Bill 286 passes in the General Assembly this year, it will forbid insurance companies from using that kind of genetic testing results as a basis for life insurance company rates.
“The knowledge that you’ve gained from a recreational genetic product could have a financial impact on your life insurance,” warned Rep. Jeff Spiegelman, R-Clayton, the primary sponsor of the bill.
Those impacts could include higher premium rates, denying coverage or terminating policies based on what Spiegelman said is private data
Ancestry.com and 23andMe both include a disclaimer that consumers’ results may affect life insurance, but many users don’t realize it, Spiegelman pointed out.
“I thought that wasn’t fair,” he said. “And I didn’t think that was fair for Delawareans.”
At the same time, he said, “I don’t want people kept in the dark about potentially serious health issues because they are worried about the financial implications of the results. This is a deterrent to wellness that we should eliminate.”
Under HB286 life insurance companies could not request, require or purchase information obtained from a direct-to-consumer genetic testing business.
They aren’t buying it now, Spiegelman said.
“But we want to ensure that they can’t into the future,” he said.
The bill still allows for medical diagnosis and records to have an effect on life insurance rates.
Genetic testing usage
HB286 is named The Ericka Byler Act, a tribute to a former Kent County native who died suddenly at the age of 25 from an undetected congenital heart defect.
“That’s the other reason I think this bill is so important,” Rep. Siegelman said. “Ericka’s issue would probably not have been detected by casual genetic testing, but plenty of people have been alerted to potential health issues by these types of tests.”
It has been assigned to the House Economic Development/Banking/Insurance and Commerce Committee.
The General Assembly is in recess throughout February while the Joint Finance Committee has hearings on the state budget.
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Delaware isn’t the only state to pursue this type of legislation.
Florida enacted a similar law in 2020. In Illinois and South Dakota, direct-to-consumer genetic testing companies cannot share an individual’s genetic test information with a life insurance company without written consent.
The Delaware bill is meant to address a gap in federal law.
The Genetic Information Nondiscrimination Act of 2008 protects Americans from discrimination by prohibiting health insurers from using genetic information to make decisions involving an individual’s eligibility, coverage or premiums.
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