

By Mark Blaxill

In a development sure to put the integrity of the CDC’s autism surveillance estimates in the spotlight, a Federal District Court Judge for the District of Utah issued a ruling Friday that effectively guarantees a Utah autism whistleblower her day in court. Judge Jill N. Parrish denied a majority of motions by Dr. William McMahon of the University of Utah to dismiss allegations by Dr. Judith Pinborough Zimmerman that McMahon and his colleagues acted improperly in retaliating against her for raising concerns over their research misconduct, violated university policies by terminating her contract without proper review, and impugned her reputation in the process.

Dr. Zimmerman filed her lawsuit against Dr. McMahon nearly two years ago, in a complaint that describes a heated dispute between the two scientists over the proper handling of confidential health and education records as well as the accuracy of the data records used in measuring Utah’s autism prevalence as part of the Center for Disease Control’s (CDC) autism surveillance project, the Autism and Development Disabilities (ADDM) Network. Since 2002, Zimmerman had been the Director of Utah’s ADDM Network site, the Utah Registry of Autism and Developmental Disabilities (URADD). She joined the University of Utah in 2005, bringing the URADD grant with her. She was removed from her URADD and university positions in 2013.

Zimmerman’s lawsuit alleges that McMahon and colleagues violated federal records privacy restrictions in efforts to carry out lucrative additional research projects; these were privacy restrictions that she had carefully negotiated with the Utah Departments of Health and Education in order to bring URADD into compliance with federal law and protect autism families from unwanted use of their personal and family information. When Zimmerman expressed her concerns over privacy and data quality issues to University authorities, McMahon summarily fired her, locked her out of her office and placed himself in charge of URADD. Since Zimmerman’s dismissal, McMahon has become the PI of the URADD and watches over Utah’s contributions to the CDC’s ADDM reports.

In addition to raising issues of research integrity and privacy, Zimmerman’s allegations have broad implications for the integrity of CDC’s autism surveillance estimates. Court documents reveal that Zimmerman was concerned that errors in Utah’s autism data were finding their way into CDC estimates beginning with the 2010 ADDM report, which provided estimates of autism rates among children born in 2002. If uncorrected, these errors might have continued in the 2012 report released earlier this year, measuring autism rates in children born in 2004.

Utah’s autism rates carry unusual importance in part because Utah’s reported autism rate in the 2008 ADDM report was the highest of all participating sites. In that report, Utah’s rate of 1 in 47 children born with autism in 2000 was the highest rate ever recorded in the United States; it was also an increase of 155% over Utah’s 1994 birth group, which at the time was the third highest rate in the country. Since reaching a peak in the 2000 birth group, Utah’s autism rates have plummeted while most other states have shown continued increases in the last two ADDM reports.



