After 100 minutes of debate, legislators called a time out Wednesday in a battle between privacy advocates and the University of Utah’s Huntsman Cancer Institute.
The advocates are upset that the institute for years has collected extensive personal information from the Utah Driver License Division without the permission of residents involved. They are pushing HB183 to inform drivers about that when they renew licenses, and let them opt out.
Researchers said that might ruin its Utah Population Database, which has helped in some of the institute’s key discoveries. They say they haven’t had time to assess that possible damage.
So members of the House Transportation Committee voted to hold the bill to allow both sides to see if they can work out a compromise to protect both privacy and research.
“This is a big decision,” said Rep. Merrill Nelson, R-Grantsville, who made the motion. “We need better and more information to make a decision.
The bill’s sponsor, Rep. Karianne Lisonbee, R-Clearfield, said she believes most Utahns would opt to allow use of their personally identifying information from in research once they hear how it is used — but said that should be their choice to make.
“In this day and age where no data is 100% secure, it is important that we inform the residents of Utah that their data is being shared and allow them the opportunity to consent to that transference of data,” she said.
Ronald Mortensen, a privacy advocate who has helped pass other privacy bills, said the current situation forces residents to permit sharing their data or not be allowed to drive — or have the identification needed to pass through airport security.
He said the data provided is extensive.
“They give the driver license number or ID card number; the first, middle and last name; sex; Social Security number; birth date; 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.
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.
“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,” said Institute CEO Mary Bekerle.
David Huntsman, president of the Huntsman Foundation, said the “Utah Population Database is a very important and unique asset, and is probably the single biggest reason why the Huntsman Cancer Institute exists here at the University of Utah.”
He added, “Any change to this information would be a significant blow to our family efforts to fund research at the University of Utah.”
Ken Smith, director of the Utah Population Database, said eliminating part of the database would be like taking some ingredients out of a prize-winning guacamole — but he isn’t sure yet whether what might be lost “would be the avocado or the dash of salt.”
He added the university uses state of the art protection, and little chance exists that the driver’s license data would be compromised or misused.
Editor’s note: Salt Lake Tribune Publisher Paul Huntsman is the brother of Huntsman Foundation President David Huntsman.
