State Sen. Liz Krueger along is calling on Gov. Kathy Hochul to immediately sign the New York Health Information Privacy Act.
Krueger told Spectrum News 1 that the need for Hochul’s rubber stamp on the bill she carried with Assemblymember Linda Rosenthal is even more urgent in light of concerns raised by the bankruptcy of DNA testing company 23andMe and the potential sale of customer data.
The bill would regulate companies that collect and sell health care information, and provide additional rights and protections to consumers related to the sale of their private health information beyond the scope of the Health Insurance Portability and Accountability Act (HIPAA).
State Attorney General Letitia James is urging customers to delete their data, and Krueger said she thinks the issue would be less of a headache for New Yorkers if Hochul had already signed the bill.
“I called the attorney general’s office right away and I asked ‘If our bill had been signed already, would that offer us some additional protections in New York State relating to this case?' And they said ‘Yes, we do think it would help to make a difference,” she said.
Krueger also cited issues related to reproductive rights, fitness trackers, smartwatches, period tracking apps and the lengthy list of potentially unwanted sexually charged products that could be marketed to individuals who use erectile disfunction drugs by using their data, as evidence that the 23andMe situation is the tip of the iceberg.
“When you made a financial arrangement with 23andMe, you didn’t believe you were giving them that information so they could sell it to anyone in the world and use it in any imaginable way,” she said.
Opponents of the bill say it is too vague, and doesn’t leave adequate running room for businesses who do work that is health-adjacent.
In January, when the bill was passed, Republican Assemblymember Josh Jensen told Spectrum News 1 that it doesn’t provide clear instructions or parameters for those whose activities could fall within its scope.
“This is not something where we want to be vague,” he said. “When you look at our heath systems, when you look at the business community that take individual data that may be in the health scope, it’s not clear whether or not it would apply.”
Krueger countered that the bill’s language as passed would have come in handy in the case of a curveball like 23andMe.
“I stand by the language in the bill, it was the appropriate language and the appropriate guardrails,” she said. “I don’t think we ever thought about the 23andMe example, but now here we are.”