Illinois governor is first in US to block federal access to personal data on autism

Illinois Gov. JB Pritzker has signed a first-in-the-nation executive order to block the federal government from collecting personal health data related to autism, a direct rebuke to the Trump administration.

Democrat Pritzker, who has been one of the more vocal critics of Trump’s second administration, signed the order last week, saying he wanted to protect “dignity, privacy, and the freedom to live without fear of surveillance or discrimination.”

It came two days after U.S. Health and Human Services Secretary Robert F. Kennedy Jr. announced a plan to use data maintained by the National Institutes of Health, and claims submitted for Medicare and Medicaid coverage, to determine the causes of autism. While the agency did not release details of the plan, Kennedy promised it would follow “applicable privacy laws to protect Americans’ sensitive health information.”

Pritzker’s executive order bans state agencies from disclosing “personally identifiable autism-related data” outside of state government unless the person or their guardian gives consent, it’s required by legal action, it’s necessary to provide services such as employment or housing or is otherwise required by law. State contractors, vendors and grant recipients are also covered.

Andy Shih, chief science officer for Autism Speaks, a national advocacy group funding research and services, said he’s unaware of a similar declaration elsewhere. And while Kennedy promises to abide by privacy guidelines, Shih said with advances in computational power and algorithmic thinking, what’s private data today might not be tomorrow.