Strict regulations are in place to safeguard the use of information in the Utah Population Database (UPDB) which contains more than 10million records at the University of Utah.
“Protecting the confidentiality of the people named in the records is the objective,” said Geraldine Mineau, director of the population sciences program at the Huntsman Cancer Institute. “We protect the current names as well as the names we have from the 1800s.”
Researchers interested in using the records must apply to the Utah Research of Genetic and Epidemiology Research (RGE) before obtaining access to the UPDB. RGE was established in the 1980’s to oversee the collection and use of these confidential data.
An RGE committee determines how such research would contribute to medical knowledge. The review committee then looks at the science of a particular project as well as whether or not the data are being used appropriately. In addition, all research must go through an institutional review board, which oversees possible risks to patients.
“Privacy is a very big deal with the database,” said Mineau. “Although records are linked within it, no identifiable information is shared with anyone — including researchers on different studies — without the proper permission.”
For example, when a research project proposes a study that is primarily a statistical analysis of the records, then identifying information such as names and addresses are not released. Instead, individuals are assigned arbitrary identification numbers. If the researcher would like to obtain more specific information or blood samples, a third party contacts the family members who are eligible for the study to see if they would be willing to participate.
Individuals who have been selected are contacted and briefed about the research study. They are then asked if their name may be released to the researcher. If the individual declines, their identifying information does not get released. If the individual approves, the name and contact information are given to the researcher and the proper protocols and next steps are taken.