Illinois Governor J.B. Pritzker has blocked state agencies from collecting or sharing autism-related data unless strictly required by law, in an apparent attempt to frustrate Secretary Robert F. Kennedy Jr’s investigation into the causes of autism.
“Every Illinoisan deserves dignity, privacy, and the freedom to live without fear of surveillance or discrimination,” Pritzker said in an executive order, claiming that RFK Jr’s new federal autism database would be a potential surveillance threat.
State agencies will be barred from collecting autism-related data about individuals unless requests are fully HIPAA-compliant and absolutely necessary for the delivery of services. Personally identifiable information will only be shared under a narrow range of conditions, requiring court orders or written consent.
Pritzker had the backing of several autism advocacy groups, which praised him for standing “against reducing individuals to data points.”
Last month, Robert F. Kennedy Jr announced that his “massive testing and research” into the causes of autism will use public and private databases to provide investigators with the most “comprehensive” evidence yet about the condition.
Dr Jay Bhattacharya, the head of the National Institutes of Health (NIH), announced that his department’s investigation into autism will use federal and commercial databases and that new sources of information will be compiled.
The NIH will launch a new disease registry to track US citizens who have autism, and this data will be combined with existing datasets for the investigation.
Dr Bhattacharya said the NIH wants to give researchers access to “comprehensive” data, so they can identify potential causes of autism with far greater certainty.
“The idea of the platform is that the existing data resources are often fragmented and difficult to obtain,” he said.
“The NIH itself will often pay multiple times for the same data resource. Even data resources that are within the federal government are difficult to obtain.”
Dr Bhattacharya said that the new comprehensive approach would yield insights into other conditions as well as autism, and that it could be used to provide “real-time health monitoring” as part of Kennedy’s “Make America Healthy Again” agenda.
Earlier this month, the Centers for Disease Control and Prevention announced that 1 in 31 children had autism in 2022, up from 1 in 31 in 2020 and 1 in 1,000 in the 1990s.
Last week, Secretary Kennedy told radio host John Catsimatidis the autism epidemic “dwarfs the COVID epidemic” and should be taken more seriously than COVID because of its effects on the young.
“This is an epidemic. It dwarfs the COVID epidemic and the impacts on our country because COVID killed old people. Autism affects children and affects them at the beginning of their lives, the beginning of their productivity.”
“And it’s absolutely debilitating for them, their families, their communities,” he added.
RFK Jr. went on to talk about the massive economic cost of autism, in addition to its emotional toll.
“For our country, just the pure economic cost of autism is, will be by 2035, $1 trillion a year. That’s just the beginning because many of these kids are aging out and their parents worry every day. And I’m talking about people with severe autism, what’s called profound autism, which is about, which is about 26 percent of the total people who are diagnosed with autism,” he said.