Utah individuals soon may be able to stop the years-long practice of the Driver License Division sharing their personal information without permission with the University of Utah’s Huntsman Cancer Institute — but the process will be a bit cumbersome.
The House Transportation Committee voted unanimously Tuesday to advance a rewritten HB183, which contains compromises worked out between the university and privacy advocates.
It would force people who want to stop the sharing of their information to go to a state website, print out a form, and deliver it in person to the Driver License Division. Earlier versions first called for drivers to “opt in” to allow sharing their data, and a later version proposed an easier “opt-out” by checking a box when people renewed licenses.
“It’s as close to a win-win as we can get,” said privacy advocate Ron Mortensen. “It does give Utans at least some control over their data by allowing them to opt out. I should note, though, that support for this bill among the public has been strongly favorable, but their preference would have been for an opt-in.”
Privacy advocates were upset that the institute for years collected extensive personal information from the Utah Driver License Division without the permission of residents involved. Researchers said stopping that might ruin its Utah Population Database, which has helped in some of the institute’s key discoveries.
Mary Beckerle, CEO of the institute, said in an earlier hearing, “I’m really proud that the Huntsman Cancer Institute has, by using this rich resource, discovered more inherited cancer gene susceptibility than any other institution on the face of the earth.”
Institute researchers said the information is used to identify which of many people with similar names have certain cancer diagnoses, and helps track them over time, tie them into genealogical data in the database and help determine whether environmental causes or such things as obesity may have led to their cancer.
But Mortensen had argued that individuals should decide whether their private data can be shared, and noted the data shared by the state was extensive in an era when data breaches have occurred.
“They give the driver license number or ID card number; the first, middle and last name; sex; Social Security number; birthdate; height; weight; hair color; eye color; birthplace; mother’s maiden name; residence, plus the 20 previous residences and the dates they changed,” he said, plus previous names used by the driver and when they changed.
Michael L. Good, senior vice president for health sciences at the university, praised the compromise that will allow privacy for those who seek it, but likely ensure a continued flow for most of the information that the university received in the past as it is required to explain online how the data is used.
“The substitute bill will allow us to continue advancing lifesaving research while underscoring commitments each of us holds very deeply: transparency, ethical research, improving public health and ensuring Utah holds its place as a world leader,” he said.
The bill’s sponsor, Rep. Karianne Lisonbee, R-Clearfield, said, “We landed in a really good spot to move forward on this issue.”