Chambana Sun

State Sen. Chapin Rose (R-Mahomet) noted his disappointment at the University of Illinois over its collection, utilization and possible sale of data related to the records of 8 million Illinoisans.

Rose’s comments came after University of Illinois President Tim Killeen’s appearance at the Illinois House Appropriations Higher Education Committee in which he discussed the university’s controversial SHIELD, a saliva test that is available for free in public schools across the state.

"This was NEVER publicly mentioned or discussed,” Rose wrote in an email to the University of Illinois administrators. “So, you've collected, and kept, 8 million saliva samples from people? Some, literary forced to take a test against their wishes. Never mind the TOTAL LACK OF TRANSAPERENCY in informing those who voluntarily wanted a test that you had alternative designs on their DNA? You are going to sell my constituent's DNA? Where is their right to control this decision?”

Rose said he's "utterly stunned" if this is true.

“You will meet with me asap on this and I sincerely hope that this isn't true, that you ‘misspoke,’ or whatever. Because this goes well beyond disappointment. I am utterly disgusted by this Orwellian invasion of personal privacy. Profiting off of people without their consent?” he said. “I want every single piece of information on what you have done and what you are planning to do with these people's DNA. Come prepared to the meeting, no spin, no BS. I'm also going to ask Rep. Mazzochi to participate in this meeting.”

In June of this year, the U of I noted it had renewed a partnership with the Illinois Department of Public Health to offer the SHIELD test in the 2022-23 school year at no further cost, according to a press release.

Rose noted that the school may sell the school-owned company at some point, at which point the data collected from 8 million people would go along with it.

“It's an LLC that reports into the university because it's a single membership corporation, if you like. We may well end up selling it off, as you know other spin-offs have been done at universities. But right now, what I said is absolutely correct. So the data rights are held by the trustees and have to be used in appropriate ways, obviously. HIPAA regulations, federal regulations, FDA rules all apply and we're very careful about all of that, all of the above. I appreciate your interest in all of this, representative,” Killeen said in the Higher Education Committee.  

James F. Holderman III, the founder and executive director of Protect Parents' Rights, warned Prairie State Wire of such a scenario last year.

“No one knows whether or how DNA data might be used for ‘future research purposes,’” Holderman said. “Even the proposal of a totally open-ended agreement regarding future research on schoolchildren's saliva should send shivers down the spines of every parent in Illinois. Advancements in technology are occurring at a staggering pace in the life sciences and there is very little transparency and almost no public input as to what things that can be done, should be done.”