SALT LAKE CITY — A bill that would require Utahns’ consent before the Driver License Division can forward personal information data to the University of Utah has stalled on Capitol Hill amid concerns it would jeopardize vital, life-saving research.
Rep. Karianne Lisonbee’s HB183 was held in the House Transportation Committee on Wednesday after researchers from the University of Utah and the Huntsman Cancer Institute urged lawmakers to pump the brakes on the bill, worried it would lead to a degradation of a “world-class” database that has allowed for critical research into diseases like cancer.
“It is the largest database of its kind in the world, and we have it here in Utah,” said Mary Beckerle, executive director of the Huntsman Cancer Institute. “This is a rich, rich resource, and the DMV information is really critical for the robustness and ongoing utility of this world-class resource.”
The Utah Population Database, which gets annual data dumps from a variety of contributors, has received information on nearly 4 million Utahns from the DMV, including name, sex, Social Security number, birth date, and identifying information including height, weight, eye color and hair color. The data also includes past and current residences, among other information.
It’s information that the DMV has been transferring to the U. for decades — first under executive order of the governor and, after legislation passed last year, now under state statute.
But Lisonbee and HB183’s supporters worry Utahns’ privacy is being violated when all that information is being sent, without their consent, to the U.
“In this day and age, we have a lot of concerns over data transfers and privacy security risk,” Lisonbee told the Deseret News in an interview earlier Wednesday. “So for me, the issue is almost every person who goes to apply for a driver’s license in the state of Utah is unaware that their data has been transferred wholesale for use for research.”
The bill is backed by Ronald Mortensen, a retired U.S. Foreign Service officer who holds a doctorate degree from the U., and who regularly lobbies Utah lawmakers on immigration and identity theft.
Mortensen spoke in favor of the bill at Wednesday’s committee meeting, arguing that when Utahns provide their information to the Driver License Division, they have no way to know it will be given to the University of Utah for research. At a time when public trust of government is languishing, Mortensen said transparency is key.
“People no longer trust the government to look out for them,” he said.
Lisonbee put forth a substitute to her bill to attempt to address some of the U.’s concerns, changing it to allow Utahns submitting paperwork for licenses to opt out of the program rather than opt in, as was originally put in the bill.
“I have the utmost honor and respect to the Huntsman family” and their charitable efforts to advance cancer research in Utah, Lisonbee said. “While the information from the driver license database is being used for these noble and great purposes, that doesn’t negate the needs of Utah residents who wish to drive and also to opt out of research that may involve their DNA, that involves data transfer that put at risk the data and security and safety of those Utah residents.”
Still, even with changes, officials with the U. and the Huntsman Cancer Institute opposed the bill. Susan Sheehan, president and chief operating officer of the Huntsman Cancer Foundation, said it’s only been one day since she was able to meet with Lisonbee to discuss concerns with the bill.
“I think this is rushed,” Sheehan said, adding that the long-term consequences of the bill may not be fully understood.
Ken Smith, a distinguished professor of family sciences sciences at the U. and director of the Utah Population Database, explained that if Utahns opt out of providing their information for research, that could lead to flaws with the data that could affect important research on what causes diseases like cancer.
“It’s a recipe that we’re building about information of the entire population,” he said, adding that “just like any recipe” the more ingredients that are taken out, the more the final product suffers.
“We’re losing quality,” he said. “We’re losing value.”
Lawmakers, both concerned about the privacy questions raised by the bill and empathetic to concerns of how it could impact U. research, urged Lisonbee to work with the U. and see if they could find a compromise.
Lisonbee said she’s willing to have those conversations before seeking to bring the bill back to committee.