Popular online lab tests may not be covered by HIPAA protections

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As more Americans sidestep doctors’ offices to order lab tests and genetic screenings online, privacy experts warn that the new trove of sensitive health data could end up in the hands of companies selling certain types of insurance, lenders, employers, or law enforcement.

Patients’ health data are typically protected under the Health Insurance Portability and Accountability Act, or HIPAA. But that federal law only applies to hospitals, physician practices, and other entities involved in coordinating or paying for patient care. The new breed of startups that sell blood panels and genetic tests — typically not covered by health insurance — directly to consumers aren’t always considered medical providers as defined by the law.

“These tests kind of feel like medical tests, but they may not always be covered by HIPAA,” said Anna Wexler, an assistant professor of medical ethics at the University of Pennsylvania who has studied direct-to-consumer health companies’ privacy practices. “Many of these companies do exist outside of the traditional medical environment.”

As more people rush to direct-to-consumer health tests driven by a desire to catch cancer before symptoms emerge or to find out if they are at risk for Alzheimer’s, experts say it’s conceivable that banks and insurers could use any health data they can to mitigate their own risks. That could impact financial products such as loans, life insurance, short-term health insurance used by gig workers and those between jobs, and long-term health insurance that pays for nursing home stays.

“If you don’t agree [to share the data], you don’t get the policy, you don’t get the bank loan, whatever you’re applying toward,” said Mark Rothstein, director of translational bioethics at UC Irvine.

Function Health, for example, which offers over 100 tests for an annual subscription fee of $365, says on its website that it is “not a laboratory or medical provider.” The…

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