Jeff Spiegelman

PHOTO COURTESY OF legis.delaware.gov

Legislative Hall
411 Legislative Ave.
Dover, DE 19901
View larger map

By Joseph Edelen

DOVER — When individuals use genetic-testing products like 23andMe and AncestryDNA, the associated health report could impact their life insurance.

When Rep. Jeff Spiegelman, R-Clayton, took one of these tests and saw the accompanying disclaimer, he thought, “Something is not quite fair about that.”

So, to prohibit such discrimination, he introduced House Bill 286, which bars insurance companies from using genetic information obtained from ancestry companies that is not in medical records.

“It would be more comforting for me and my constituency in the state of Delaware to have it be that this information gained from a direct-to-consumer product cannot be used for life insurance premiums in the future,” the representative said during the bill’s consideration in the House of Representatives’ Economic Committee on March 5.

Under the legislation — which has bipartisan sponsorship from 20 members of the General Assembly — life insurance firms would not be able to request, require or purchase information from these genetic-testing businesses.

Further, the data in the reports could not be used to consider canceling a policy, setting premiums or paying claims without “additional actuarial justification,” according to the bill.

Known as the “Ericka Byler Act,” the legislation is named for a former Kent County resident who passed away unexpectedly at age 25 from an undetected genetic heart condition.

During HB 286’s committee consideration, Rep. Spiegelman said Ms. Byler’s cause of death saved members of her family, who subsequently got genetic testing and treatment. And, while the legislation would likely not have spared Ms. Byler’s life, he added, its enactment could save others.

“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,” Rep. Spiegelman said in a statement. “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.”

The proposal also aims to cover a gap in the federal Genetic Information Nondiscrimination Act of 2008, which bars health insurance companies from using genetic information to alter an individual’s eligibility, coverage or premiums.

Under the federal law, protections apply to private health insurers, Medicare and Medicaid but does not cover life, disability or long-term care insurance.

Prior to the bill’s unanimous release from committee, Rep. Spiegelman said he is in talks with insurance stakeholders about written permission and pertinent family history clauses in the legislation.

“I think we’re very, very, very close to an agreeable compromise on these things, so there will be an amendment to House Bill 286 based on their input,” he told committee members.

This legislation mirrors a Florida law enacted in 2020, according to a House Republican caucus spokesperson. Similarly, Illinois and South Dakota have authorized policies to prohibit direct-to-consumer genetic-testing companies from sharing information with life insurance companies without written consent.

Following its release from committee, House Bill 286 has been placed on the ready list for consideration on the House floor.