State lawmakers are considering measures to restrict life insurance companies’ access to genetic information obtained from direct-to-consumer genetic testing firms.
Under House Bill 286, introduced by State Rep. Jeff Spiegelman (R-Clayton), life insurance providers would be prohibited from purchasing genetic data from companies such as 23andMe and AncestryDNA.
Spiegelman emphasizes that genetic tests often come with a disclaimer warning that results could impact life insurance policies. The proposed legislation aims to shield individuals from potential rate hikes or coverage termination resulting from recreational genetic testing.
“Recreational products like these tests don’t necessarily guarantee accuracy, and there are no consequences for inaccuracies,” Spiegelman notes.
He argues that only genetic testing subject to federal regulation and conducted for specific medical purposes should necessitate disclosure to insurers. “Detailed genetic information should only be derived from medically qualified tests,” he asserts.
Named in honor of Ericka Byler, a former Delaware resident who died suddenly at 25 due to an undiagnosed congenital heart defect, the bill seeks to prevent individuals from being uninformed about potential health risks out of fear that their genetic data could be exploited.
“While recreational genetic testing may not have changed Ericka’s fate, we don’t want people withholding important health information because of concerns over data privacy,” Spiegelman states.
Acknowledging that the practice of sharing genetic information with insurers isn’t prevalent currently, Spiegelman highlights that Florida, South Dakota, and Illinois have enacted similar laws as preemptive measures.
He reveals plans to amend the bill to include provisions allowing consumers to consent to the release of their genetic data if they wish. “We don’t intend to prohibit individuals from voluntarily sharing their own data,” Spiegelman explains, noting input from the insurance industry.
The bipartisan-supported bill, endorsed by one-third of Delaware lawmakers, awaits review by the House Economic Development/Banking/Insurance and Commerce Committee.
