Bill to block use of casual genetic testing passes to House

Katie KazimirGovernment, Headlines


A bill that would forbid life insurance companies from accessing the result of testing by 23&Me and similar companies passed a House committee Tuesday. Photo by Andrea Piacquadio/Pexels

Insurance companies won’t be able to increase life insurance rates based on results from recreational genetic tests if House Bill 286, makes it through the General Assembly and is signed into law.

The House Economic Development/Banking/Insurance & Commerce Committee voted unanimously Tuesday to release the bill, known as the Ericka Byler Act, to the full House for a vote.

Under HB286, life insurance companies could not request, require or purchase information obtained from a direct-to-consumer genetic testing company such as 23&Me.

Rep. Jeff Spiegelman, R-Clayton rent tenant landlord

Jeff Spiegelman and 23andMe both include a disclaimer that consumers’ results may affect life insurance, but many users don’t realize it, Bill sponsor Rep. Jeffrey Spiegelman, R-Claymont, pointed out.

Those impacts could include higher premium rates, denied coverage or terminated policies based on what Spiegelman said is private data.

Bill sponsor Rep. Jeffrey Spiegelman also said direct to consumer genetic tests from recreational companies do not have accuracy standards regarding genetic information.

“Decisions on life insurance need to come from either actual pertinent family history, or from genetic tests that do have accuracy standards,” said Spiegelman. 

Under the bill, direct consumer products would not be factored into life insurance premiums in  the future.

The bill still allows for medical diagnosis and records to have an effect on life insurance rates.

There are now no life insurance companies that actually use the data from consumer genetic testing in underwriting life insurance premiums.

Genetic tests sold

However, Chris Haas, senior policy advisor for the Delaware Department of Insurance, said data has been sold by consumer genetic test companies to drug manufacturers. 

“While potentially perfect for use in drug discovery, consumers and lawmakers are rightfully concerned about the lack of guardrails in place,” Haas said. 

HB286 was named after Ericka Byler, who passed away from an undiagnosed genetic heart condition at the age of 25 while on a mission trip in India.

After her death, Byler’s relatives received genetic testing to find out if any other family members carried the same gene.

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“The tragic outcome of Ericka’s death actually saved members of her family who got genetic testing and sure enough were positive for the genetic condition and are now seeking treatments that will prolong their lives,” Spiegelman  said. 

“This bill … probably would not have saved Erica’s life. But it’s something that we can do along those same lines to hopefully save lives in Delaware,” said Spiegelman. 

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 legislation addresses 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.

To become law, the bill must be passed by the full House, a Senate committee and the full Senate. Then it would go to the governor’s desk for a signature.



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