As part of a nationwide autism study, more than a dozen Colorado schools, hospitals and clinics shared more than 1,600 children’s medical and special-educational records with the state health department – without the knowledge or consent of the children’s parents.
In fact, most of the parents learned their children were part of the study only after a thief made off with a health department employee’s car – and the laptop computer inside that contained the records.
Now, many of those parents are outraged, while others, especially advocates for children with autism, are worried the outcry is jeopardizing what they believe is important research.
“I’m feeling very violated,” said Suzanne Fountain, whose 10-year-old son’s records were among those taken.
The state health department said it also sought special-education records because it wanted a broad scope including disorders that are not necessarily diagnosed as autism. Autism is an umbrella term for a range of neurological disabilities.
Like other parents, Fountain found out about the federal Centers for Disease Control and Prevention study, and her son’s inclusion in it, well after the fact, when Boulder Community Hospital and then, months later, the Boulder Valley School District, wrote to tell her the records were missing.
Fountain, who said her son does not have autism but was likely included because she once sought special- education help for him, is angry. And not just because her son’s medical records are floating around somewhere, possibly in the hands of a thief.
She’s mad, Fountain said, because the state should have asked before looking through her son’s records.
If she had been asked, Fountain said, she would have said no.
The state health department says that it was following standard procedure.
Autism was designated a “reportable” condition in Colorado several years ago, said Dr. Lisa Miller, director of disease control and environmental epidemiology at the state health department.
That means health care providers report cases of autism when they are diagnosed, just as they do measles, tuberculosis and other diseases.
In none of those cases are patients notified that their condition has become a state statistic.
Miller said that after receiving the CDC grant – about $700,000 a year for this and other autism research – the health department and the state Department of Education forged an agreement “that authorized us to be able to collect this information.”
Then it was up to individual school districts to agree to provide the information.
Notifying parents – or any participants of this kind of data compilation ahead of time – “isn’t part of the methodology the CDC has used or prescribed to the states to use,” Miller said.
However, Dr. Catherine Rice, a CDC researcher working on the autism studies, said some participating sites did choose to notify parents ahead of time.
When Colorado joined the CDC study, the state hoped all 15 Front Range school districts would participate. Initially, only eight agreed, and now one of those has pulled out, Miller said. Another district that had agreed to join has reversed that decision, she said.
She declined to name either district.
Colorado is one of 18 states participating in the study.
“There have been a lot of important concerns about increases in autism,” Rice said. “We really don’t have good population- based data to tell us what the prevalence of autism is in this country, and any way to track it over time.”
Getting that data, Rice said, is crucial to helping identify kids with autism more efficiently, and earlier.
How the incident and the resulting concern will affect Colorado’s participation remains to be seen, Rice said.
“I’m not quite sure at this point,” Rice said. “The project going forward certainly depends on the community participating.”
If Colorado had to drop out, “it would be a real shame,” Rice said. “It would affect a lot of children in the community who are not being counted for who they are.”
In the meantime, the state health department says that it has been assured that whoever has the laptop most likely has not penetrated the encryption code.
Staff writer Karen Augé can be reached at 303-820-1733 or kauge@denverpost.com.
