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Bill to protect vulnerable online health data heard in Olympia

A panel of witnesses testifies on House Bill 1155 in State Senate Law and Justice Committee (Images courtesy of TVW)

Your private health data, which could be used to track people who come to Washington for abortion or gender-affirming health care services, would be protected under a bill now in the State Senate.

We’re talking about information not protected by HIPAA, including online searches, shopping and location tracking.  State Representative Vandana Slatter (D-Bellevue) says it’s information that can be purchased for $160.  “A business model that uses algorithms to forecast your actions and deliver targeted ads to you,” Slatter says, “can now be used to track and hunt people who can be criminally prosecuted and denied life-saving care.”  Slatter is referring to the practice by prosecutors in states where abortion has been legalized to track a woman’s searches and location data to tell if they have traveled to Washington State to seek care that’s legal here but not in their home states. One testifier recounted a story of a Target algorithm that looked at 25 items searched by a pregnant teenage girl, whose parents didn’t yet know she was pregnant. They say the algorithm gave her a “pregnancy prediction score” that accurately pegged her due date within a small window and then began sending her parents targeted ads for baby clothes and cribs.

State Sen. Manka Dhingra (D-Redmond) presides over hearing on House Bill 1155

That’s why Slatter’s House Bill 1155 aims to protect your privacy by requiring companies to have your consent to collect and share the data and to make it easy for you to withdraw consent or have the data deleted.

Ashley Sutton, executive director of Technet, says the definitions of health data are too broad.  Sutton says, “Everyday activities, like purchasing ibuprofen, and make-up, deodorant and even following a fitness influencer on a social media platform would invoke opt-in consent notifications.”  The concern of opponents is that those opt-in notifications would be triggered when data isn’t actually private health care information and could lead to “opt-in fatigue” that would weaken the bill’s intent.

The bill is set for a vote in the Senate Law and Justice Committee, but it has not been scheduled yet.  You can watch the entire hearing on TVW here.  It starts at approximately the 1:32:05 mark.

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