Illinois bill aims to protect consumers from how companies store, collect health data
SPRINGFIELD, Ill. (WCIA) – A bill in the Capitol aims to protect people from how companies store and collect their health data.
The proposal passed out of a House committee Wednesday, but the bill’s sponsor and advocates say they still have more work to do on it.
“We don’t want to do things that we don’t need to do and require businesses to go through hurdles they don’t need to but at the same time, this is really the wild wild west, there is very little regulation,” State Rep. Ann Williams (D-Chicago) said during the committee hearing Wednesday.
Under the proposal, health data includes information connected to a person’s past, current or future physical or mental health, ranging from health conditions, treatments and surgeries to someone’s vital signs, measurements or symptoms.
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“It’s basic things like If I’m using a smartwatch of some kind, and it’s taking my temperature, the kinds of exercises I’m doing,” Khadine Bennett, the director of advocacy and intergovernmental affairs for the ACLU of Illinois, said.
The bill would require companies to have a health data privacy policy laying out what information they’re collecting, using, selling, and storing and why. They would also have to get people’s consent.
“Data is one of the most sensitive parts of your information and more and more people are collecting that information,” Bennett said. “Data aggregators are scraping the web to have a treasure trove of information about you, and then who knows what happens to it.”
Bennett said the concerns around data privacy came to the forefront after the U.S. Supreme Court overturned Roe v. Wade.
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“It’s really important in Illinois for us to continue to protect the right of people to make health decisions that work for them and not feeling a fear that that information can be weaponized against them,” Bennett said.
Opponents of the bill argue the definition of health data in the proposal is too broad.
“This will unnecessarily complicate disclosure, consents and authorization requirements, as businesses will be pushed to inundate consumers with disclosures about data that may not be health related, thereby injecting confusion into the industry and impeding meaningful notice and choice,” Tyler Diers, TechNet’s executive director of Illinois and the Midwest Region, said during the committee hearing.
If the bill becomes law, a person who believes a company violated it could take legal action against them. The attorney general would also be able to enforce it under the state’s Consumer Fraud and Deceptive Business Practices Act.
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