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Legislation seeks to bar life insurance companies from purchasing recreational genetic testing data

23andMe home testing kit
Meredith Rizzo
23andMe home testing kit

State legislators look at preventing life insurance companies from buying information from direct-to-consumer genetic testing companies.

State Rep. Jeff Spiegelman’s (R-Clayton) House Bill 286 would bar life insurance companies from purchasing genetic information from companies like 23andMe and AncestryDNA.

Spiegelman says genetic tests often contain a disclaimer stating results may affect your life insurance policy. This bill would prevent recreational genetic tests from causing insurance rate boosts or even termination of coverage.

“These recreational products don’t necessarily have to be accurate. There’s no ramifications if they’re not," he says.

Spiegelman argues only federally regulated and purposeful genetic testing should have to be disclosed so people are not discouraged from seeking these results.

“That level of detail should only come from a medical qualified test," he adds.

The bill is named The Ericka Byler Act in tribute to a former Delawarean who died suddenly at the age of 25 from an undetected congenital heart defect.

Spiegelman says while recreational genetic testing may not have saved Byler’s life, he does not want people kept in the dark about potential health issues over concerns their private data could be shared.

“I’ve actually had friends reach out to me and say that they have not got genetic testing done from a recreational point of view because they’re afraid that a life insurance company will simply buy the information, and they’ll be put in an awkward spot.”

Spiegelman says this type of information sharing does not appear to be happening now, but Florida, South Dakota and Illinois have enacted similar laws to prevent it from occurring in the future.

He is currently working on an amendment or substitute for the bill to include a caveat that consumers can give permission to have the genetic data released, if they so choose.

"We don't want to make it illegal for you to give your own data away. It was a good point brought by the insurance industry, and so we're going to be incorporating that."

A third of Delaware lawmakers have signed the act, including members of both parties and legislative chambers.

The bill currently awaits a hearing in the House Economic Development/Banking/Insurance and Commerce Committee.

Before residing in Dover, Delaware, Sarah Petrowich moved around the country with her family, spending eight years in Fairbanks, Alaska, 10 years in Carbondale, Illinois and four years in Indianapolis, Indiana. She graduated from the University of Missouri in 2023 with a dual degree in Journalism and Political Science.