The Sentinel: Data Privacy

Illinois becomes the first state to restrict federal access to autism-related data

One in 31 children in the U.S. is diagnosed as being on the autism spectrum.

by Judith Ruiz-Branch
Illinois News Connection

CHICAGO - Illinois is the first state to block the federal government from accessing state data on autism.

The order, signed by Gov. JB Pritzker last week, is in response to federal efforts to create a mass data collection on autism.

Health and Human Services Secretary Robert F. Kennedy Jr. plans to use Medicare and Medicaid data to create an autism registry with the goal of finding the cause of what he called an "autism epidemic." Pritzker's order prohibits the collection in Illinois without consent from an individual or guardian.

Federal agencies said they would protect sensitive health information.

Jeff Chan, associate professor of special education at Northern Illinois University, said along with concerns about accidental disclosure of protected health information, right now there is no single cause or cure for autism and he is skeptical a database could change it

"I don't even know if we will ever find that one, single cause," Chan acknowledged. "There's a variety of factors in play on the genetic side and the environmental side that are all affecting parents and mothers and children, which eventually lead to the expression of those symptoms."

Federal agencies said they would protect sensitive health information. More than a dozen autism organizations and advocates are pushing back against the planned database and any rhetoric claiming autism is "curable" or is caused by vaccines.

One in 31 children in the U.S. is diagnosed as being on the autism spectrum. Chan noted in Illinois the rate increased from one in 333 children in 2002 to one in 51 children in 2023. He added while cases are rising, the numbers are also influenced by earlier diagnosis and improved data collection.

Chan emphasized the importance of oversight of data and interpretation and cautioned about the potential for drawing conclusions from incomplete information or cherry-picking evidence.

"Anyone could collect data and they can interpret it differently, and they can spin it differently," Chan stressed. "That happens all the time. And that's happened in the past, especially about the causes of autism."

Chan advised caution regarding individuals with extreme theories. He acknowledged the difficulty parents and caregivers face in evaluating information and the importance of institutions to help navigate the evidence.

"There's people out there that, for whatever reason, are true believers about a particular narrative about autism," Chan explained. "You have to be a very careful consumer about what you take in and what evidence you choose to believe."

Other interesting articles:

Illinois AG files TRO against news group that refuses to remove voter information

Last month, the State Board of Elections (SBE) asked Attorney General Kwame Raoul to consider legal action against Local Government Information Services (LGIS), a publishing business operated by co-founder Brian Timpone and reportedly backed by failed gubernatorial candidate Dan Proft of Naples, Florida.

You see, LGIS, which operates the Chambana Sun and 19 other news sites focused on local news, is under scrutiny because they recently published voting information for every voting precinct in the state. In addition to listing a breakdown of support by party, the automated story also divulges the number of registered voters and number residents in the district.

Here is an example from one of the Tolono precincts:

"The voting breakdown in Southeastern Township of Tolono: Precinct Tolono 1 reveals 59.6% of the total supporting Republicans, and 36.8% of the votes for Democrats, highlighting the precinct's political preferences.

Overall, 170 registered voters in the Southeastern Township of Tolono: Precinct Tolono 1 did not vote in 2020.

Additionally, an estimated total of 1,546 residents were reported to be aged 18 or older in Southeastern Township of Tolono: Precinct Tolono 1, according to the last US Census and the 2021 American Community Survey."

~ Chambana Sun

That information is pretty vanilla. Where the defendants may have crossed the line legally if not morally, is each article lists the full name of the voter, their birthdate, their address, and whether they voted in the 2020 election or not. No doubt scammers and identity thieves are absolutely tickled pink having unfettered access to the information.

Local county clerks and the SBE have received complaints from concerned voters statewide.

Despite the SBE's request that the sensitive information be removed from the Chambana Sun and their other news sites, LGIS has seemingly ignored the state authority that regulates election integrity and information. On Friday, A.G. Raoul filed a TRO request in Lake County against LGIS alleging violations of the state election codes.

Plaintiffs, Illinois Attorney General Kwame Raoul on behalf of the People of the State of Illinois and the Illinois State Board of Elections, by their attorney, Kwame Raoul, Attorney General of the State of Illinois, submit this Memorandum of Law in Support of their Emergency Motion for Temporary Restraining Order and Preliminary Injunction, against Defendant, Local Government Information Services, Inc., based on Defendant’s publication of sensitive voter registration information in violation of Sections 4-8, 5-7, and 6-35 of the Illinois Election Code. 10 ILCS 5/4-8, 5-7, and 6-35."

The Attorney General claims that LGIS is not a political committee and could not have legally obtained the voter information. Typically, political action committees can purchase the State Board of Elections' voter file for political reasons. Use of the information can be used for other business purposes.

Timpone, once the CEO of the Greater Illinois News Group which briefly owned newspapers in Champaign, Douglas, and Moultrie Counties, worked locally as a TV reporter and covered the capitol for WCIA-TV decades ago. You can't discuss the term "Pink-Slime Journalism" without his name. According to the New York Times, "The sites operated by Timpone's networks do not typically post false information, but "the operation is rooted in deception, eschewing hallmarks of news reporting like fairness and transparency".

Proft, who at one time portrayed himself as part-owner of LGIS and earned a law degree from the Loyola University Chicago School of Law, dipped a toe into Illinois politics back in 2009 when he tossed his hat into the ring for the governor's seat. Frost-bitten in the cold world of campaigning, he received only 7.78% of the Republican vote in the primary, coming in sixth in the seven-way race. According to various sources, his name does not appear on corporate ownership documents.

Matt Dietrich, a spokesman for the Illinois State Board of Elections, told Fox 2 News last month that LGIS has no right to publish the data from 2016.

“They are not entitled to have that file, which was obtained under the idea it was for a political action committee and to be used for political purposes,” he told the Fox affiliate.

Obviously, the managing team for the Lake Forest-based company believes otherwise. The information is still readily available on Chambana Sun and other sites under their control.