It seems that a day doesn’t go by without a highly acclaimed scholar being accused of scientific fraud, which can range from manipulating data and results to plagiarism. When caught, studies that are trusted and “settled science” are retracted. However, the damage may already have been done to the subjects of the studies and to those who relied on pleas to “trust the science.” When the fraud is not found or investigated and continues to be accepted, it sets science back for years and may result in serious harm to millions of people.

Unfortunately, Utah is not exempt from this. State and federal lawsuits along with news reports have highlighted the failure of academic researchers at the University of Utah to adequately address scientific misconduct and fraud. In one instance, this included fraud involving children with autism and other disabilities who had their most sensitive medical and educational information improperly shared, their data misclassified and omitted, and the study results skewed. This puts the well-being of these children and all other children at risk.

This scientific fraud and data misuse is often driven by the pressure to obtain research grants. Unfortunately, at least some academic researchers at the university have shown that they are willing to put research integrity and ethical guidelines aside in order to get the data necessary to obtain lucrative grants, which in fiscal year 2023 brought in a total of $768 million. In addition to the money, the studies funded by grants allow faculty to publish studies based on their research. This is necessary to obtain tenure and to achieve the prestige and acceptance that is so highly sought after in academia.

In today’s world where data is the new currency, the university has received over a billion health-related records from various state agencies. These records include both adult and children’s names, birthdates, Social Security numbers, addresses, diagnostic codes, etc.

Key to research integrity with human subjects, particularly children, is obtaining their parents’ informed consent for study participation, ensuring that children’s information is carefully protected and that those who may harm children are denied access to this information. This appears to be given low priority by the university and its researchers. We all should be concerned that unauthorized data transfers have occurred and continue to occur despite research protocols, data-sharing agreements, contracts, and federal laws promising and requiring confidentiality.

We continue to believe that personal career motives, profit and institutional reputation are frequently behind uninvestigated reports of scientific misconduct including fraud. One of us, Zimmerman, reported scientific misconduct at the university involving unauthorized sharing of children’s health and education records, use of a fraudulent contract, forgery, plagiarism, and intentional modification and omission of study data to influence autism study findings. However, in two court trials, the university, represented by the Utah Attorney General’s Office, still continues to oppose any independent investigations of Zimmerman’s reports of scientific misconduct.

Tragically, the governor and legislators allow the sharing of children’s confidential, private and controlled records with researchers. Rather than giving parents control over their children’s records, civil servants have been authorized to determine what will be released. In fact, Utah Code 63G-2-202(8)(a) states, “a government entity may disclose or authorize disclosure of private or controlled records for research purposes, if the governmental entity determines that the research purpose cannot reasonably be accomplished without use or disclosure of the information to the researcher in individually identifiable form” and “determines the proposed research is bona fide” and “the value of the research is greater than or equal to the infringement upon personal privacy.”

When the governor, the UAGO and legislators fail to take scientific fraud seriously, this places Utah children’s health and well-being and possibly even their very futures at risk. The widespread data sharing, manipulation and misuse of children’s most sensitive personal, medical and even educational information can cause terrible harm. It’s time for the governor and our legislators to stop this sharing of data without informed consent. Children’s lives may depend on it.

Judith Pinborough-Zimmerman, Ph.D., was an assistant research professor at the University of Utah from 2005-2013 and a program manager and speech pathologist at the Utah Department of Health from 1978-2005. She has prevailed against the state of Utah on whistleblower-related claims in state and federal court.

Ronald Mortensen, Ph.D., currently focuses on preventing the unauthorized use of Utahns’ personal identifiable and medical information for scientific and other purposes.

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