New bill set to block life insurers from buying customers’ genetic testing data

Delaware lawmakers are considering legislation that would prevent life insurance companies from acquiring genetic testing data from direct-to-consumer companies, such as 23andMe Holding Co. and Ancestry.

The proposed bill, HB 286, aims to also forbid life insurers from rejecting or refusing to renew policies based on genetic data that isn’t part of a medical record used for diagnosing medical conditions, as per a report from AM Best.

State Representative Jeff Spiegelman, who is spearheading HB 286, shared his personal experience with genetic testing, highlighting concerns about how these tests impact life insurance decisions.

“Often, these reports contain a disclaimer stating that knowledge of what you are about to receive may affect your life insurance. I don’t think it’s fair that information you received through a test you paid for can be used by your life insurance company to boost your rates or deny you coverage,” Spiegelman said.

The bill is named in memory of Ericka Byler, a Delaware resident who passed away at 25 due to an undiagnosed congenital heart defect. Spiegelman emphasized the broader implications of genetic data usage in insurance, noting that while casual genetic testing might not have saved Byler, such tests have alerted others to potential health issues.

“Allowing life insurance companies to set rates, deny coverage, or terminate policies based on this private data could have a chilling effect on the appeal of submitting your DNA for analysis,” he explained.

Spiegelman is also reportedly drafting amendments to the bill that would allow individuals to voluntarily release their genetic data to insurers.

This Delaware initiative mirrors actions in other states, with Florida adopting a similar law in 2020 and Illinois and South Dakota requiring written consent before genetic test results can be shared with life insurers.

A spokesperson for the American Council of Life Insurers noted that the council is currently reviewing the bill and maintaining communication with its sponsors.

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