SALT LAKE CITY — A former University of Utah researcher is suing her former employer for wrongful termination and alleging that researchers at the school improperly accessed hundreds of thousands of Utah children's medical records without approval.
The lawsuit, filed two years ago, could have implications in authenticating autism rates in Utah, which have been reported higher than the national average.
According to court documents, Judith Zimmerman, a speech-language pathologist and former assistant professor of psychiatry at the university, filed the suit in federal court.
In her complaint, Zimmerman alleges that her employers, including former psychiatry chairman William McMahon, retaliated against her for raising concerns that protected data was being "compromised and accessed without proper authority."
District Judge Jill Parrish issued a decision last week dismissing some of Zimmerman's complaints related to her allegations of discrimination but referred others to the Utah Supreme Court to answer.
Zimmerman, who created and oversaw a state registry of autism and developmental disabilities, alleges in her complaint that a University employee copied private medical data and shared it with researchers in violation of confidentiality and privacy agreements.
In addition, Zimmerman alleges McMahon stopped researchers from correcting "major data errors."
Lawyers for the University of Utah and McMahon denied the allegations in their response.
In an email, Zimmerman said she considers research integrity and data privacy to be "very important issues."
The state autism database is a crucial part of the CDC's Autism and Developmental Disabilities Monitoring Network, the country's largest ongoing autism tracking system.
The CDC's autism reports have been key to understanding the prevalence of autism after studies appeared to show a startling rise of autism rates in the 2000s.
In 2012, researchers identified Utah as having the highest rate of children diagnosed with autism out of the 14 communities surveyed in the network, a revelation that many found alarming.
That report, which was based on data from 2008 and relied on the state autism database, found that 1 in 47 Utah children had been identified as having autism — almost twice that of the national average
The CDC's next report, released in 2014 and based on data collected in 2010, showed that Utah no longer led the nation in autism prevalence. Researchers that year estimated that about 1 in 54 Utah children had been identified with autism spectrum disorder — much closer to the national average of 1 in 68.
In an email, Zimmerman claims that "pervasive" errors were found in the diagnostic codes used for individual children that year.
"Of course, we can't know for sure what the corrected numbers would have revealed, but suspect that the prevalence of ASD for study year 2010 was actually higher than reported," Zimmerman said.
She added: "To the best of my knowledge the errors have never been fully corrected."
The data in question involved approximately 750,000 records of children's medical and educational information, Zimmerman said.
The records contained children's names, birthdays, information about medical characteristics that may represent autism, special education classification and parents' names and addresses, according to court documents.
Because the records contained medical and educational information, they are subject to privacy laws known as HIPAA and FERPA, Zimmerman argues, and required approval from the school's Institutional Review Board and the Utah Department of Health to access — approval that Zimmerman alleges researchers did not have.
Asked about Zimmerman's allegations, University of Utah Health Care spokeswoman Kathy Wilets said the university could not comment due to the pending case.
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