SPRINGFIELD - Most Illinoisans are not aware that if they live in the state and get medical attention from an Illinois health care provider, their and their children's immunization records are stored in the I-CARE registry -- the Illinois Department of Public Health's central data bank.
I-CARE was news to Crystal Trigg of Springfield, who took her kids for routine school physical exams and found out that doctors are now required by law to report her children's immunization records to the state's Registry without specific written authorization of the client, their parent, or guardian. She was even more shocked to find out she would have to "opt-out" specific individuals she didn't want to have access to those records.
In 2011, I-CARE switched from being an "opt-in" to an "opt-out" registry when the Illinois Chapter of American Academy of Pediatrics worked in conjunction with the Illinois Academy of Family Physicians and the Chicago Area Immunization Campaign/Illinois Maternal Child Health Coalition and state representatives to pass House Bill 1338, which established I-CARE as an “opt-out” only.
The Immunization Data Registry Act, 410 ILCS 527, authorizes the Illinois Department of Public Health (IDPH) to develop and maintain an immunization data registry to collect, store, analyze, release and report immunization data, raising questions among concerned parents:
Who can view the registry info?
- Health Care providers
- Local Health Departments
- Elementary or secondary schools
- Licensed child care centers
- Licensed child-placing agencies
- Colleges or universities
- Illinois Department of Public Health employees and their authorized agents (e.g., I-CARE staff)
Why aren't parents allowed to view their children's registry records?
According to a Illinois Department of Public Health staffer, federal HIPAA laws protect the privacy of some children's immunization records from their own parents. For example, if a child believes he or she has been exposed to a sexually-transmitted infection and receives a preventative vaccine such as Gardasil or Hepatitis B, parents are not allowed to access to the child's I-CARE records pertaining to that immunization.
"If you give me the name of a child, I can look it up and tell you if there's a record for the child in the I-CARE registry, but unless you're authorized to know what is in the record, I couldn't tell you what immunizations your child has received," an IDPH staffer told Illinois Review.
For families like the Triggs, immunizations records can reflect religious and medical exemption statements, as well as other private information they would prefer to remain confidential and not exposed to the eyes of state employees. In the wake of revelations about government spying and data-mining as well as the massive surveillance systems setup at the federal, state and local levels, more families like the Triggs are being forced to confront the loss of privacy in America and Illinois.