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Delaware proposal would limit access to DNA tests

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(The Center Square) — A new bipartisan proposal in the Delaware Assembly would prohibit insurance companies from accessing DNA testing results from their customers to set premium rates.

The legislation being considered by the House Committee on Economic Development, Banking, Insurance and Commerce would block insurance companies from using genetic testing results as a basis for life insurance company rates.

Backers of the plan argue that insurance companies shouldn’t be allowed to access a person’s DNA tests that can predict a policyholder’s predisposition to deadly diseases, such as cancer or rare genetic maladies.

The bill’s primary sponsor, Rep. Jeff Spiegelman, R-Clayton, said, like many people, he has taken a DNA test, which can be used to verify someone’s ancestry or check for any genetic health issues.

“Often, those reports contain a disclaimer stating that knowledge of what you are about to receive may affect your life insurance,” Spiegelman said. “I don’t think it’s fair that the 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.”

He said the bill is titled the Ericka Byler Act in honor of a former Delwarean woman who died suddenly at the age of 25 from an undetected congenital heart defect. He said public concerns about access to the data from other parties has had a “chilling effect” on people getting tested for potentially life-threatening illnesses.

“That’s the other reason I think this bill is so important,” he 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.”

Under the proposal, life insurance companies would not be allowed to “request, require, or purchase” information obtained from a direct-to-consumer genetic testing business. The measure would further ban using the information for “canceling a policy, setting premiums, or paying claims without additional actuarial justification.”

Spiegelman said the plan would also address a gap in the federal Genetic Information Nondiscrimination Act of 2008, which is aimed at protecting Americans from discrimination by prohibiting health insurers from using genetic information to make decisions involving an individual’s eligibility, coverage or premiums.

These protections apply to private health insurers, Medicare, Medicaid, federal employees’ health benefits and the Veterans Health Administration. But the law doesn’t cover long-term care insurance, life insurance or disability insurance.

Several states, including Florida, Illinois and South Dakota, bar genetic testing companies from sharing an individual’s genetic test information with insurance companies without written consent, according to the National Conference of State Legislatures.

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