About the UPDB
The Utah Population Database is located at the University of Utah. It has been managed by Huntsman Cancer Institute at the University of Utah for more than two decades.
The Utah Population Database (UPDB) is one of the world’s most valuable and powerful data resources for health research. The UPDB allows scientists to study patterns and causes of disease. The UPDB is the only database of its kind in the United States. It has been used in many studies to help learn how genes and the environment cause diseases and improve health care.
This information is provided for Utah residents in accordance with Utah State Code.
How Researchers Use the UPDB
Scientists use health information from the UPDB to study genes and the environment to understand diseases affecting people like you and your family members. For example, scientists have used the UPDB to find genes that cause melanoma, a serious type of skin cancer, and cancer in the colon and breast. Using public air quality data linked to the UPDB, scientists have also located neighborhoods with higher asthma rates. The UPDB has been used to help define and improve screening guidelines for cancer that are in use around the world.
UPDB Discoveries Have Improved Human Health
UPDB has been critical to discoveries that have improved the health of millions through research that has led to better screening and testing recommendations. These include the prevention and detection of important diseases such as breast, ovarian, and colorectal cancers. Findings from UPDB have been cited in thousands of key scientific publications that contribute to medical knowledge and practice.
Recent Discoveries:
1. Identifying inherited cancer risk across generations
UPDB research has enabled discovery of rare, high impact genetic variants that increase risk for multiple cancers, directly informing genetic counseling, risk assessment, and precision screening for families.
Representative recent studies
• Oxnard GR et al. Germline EGFR Mutations and Familial Lung Cancer. Journal of Clinical Oncology, 2023.
• Zanti M et al. Analysis of more than 400,000 women provides evidence for BRCA1 and BRCA2 variant classification. Nature Communications, 2025.
• Cannon Albright LA et al. A rare variant in MDH2 is associated with predisposition to recurrent breast cancer. Cancers, 2023.
2. Clarifying ovarian cancer risk for people with endometriosis
UPDB linked population studies demonstrated that specific endometriosis subtypes carry different levels of ovarian cancer risk, enabling more personalized counseling and surveillance.
Representative studies
• Barnard ME et al. Endometriosis Typology and Ovarian Cancer Risk. JAMA, 2024.
• Barnard ME et al. Familial risk of epithelial ovarian cancer after accounting for gynecological surgery. Journal of Medical Genetics, 2023.
• Schliep KC et al. Endometriosis and pregnancy outcomes—another piece to a complex puzzle. Fertility and Sterility, 2024.
3. Revealing genetic risk for serious pregnancy complications
Using multigenerational pedigrees, UPDB researchers uncovered inherited genetic contributions to stillbirth, spontaneous preterm birth, and placental abruption, reshaping understanding of pregnancy risk.
Representative studies
• Workalemahu T et al. Familial aggregation of stillbirth. BJOG, 2023.
• Workalemahu T et al. Mapping genetic susceptibility to spontaneous preterm birth. American Journal of Obstetrics & Gynecology, 2024 / 2025.
• Dalton SE et al. Familial risk of placental abruption. European Journal of Obstetrics & Gynecology and Reproductive Biology, 2026.
4. Predicting Alzheimer’s disease years before diagnosis
By linking decades of electronic health records and population data, UPDB studies showed that future Alzheimer’s disease and related dementias can be predicted well before clinical diagnosis, supporting earlier intervention and planning.
Representative studies
• Schliep KC et al. Predicting the onset of Alzheimer’s disease using electronic health records. BMC Medical Informatics and Decision Making, 2024.
• Schliep KC et al. Hypertensive disorders of pregnancy and subsequent risk of Alzheimer’s disease and other dementias. Alzheimer’s & Dementia (Amsterdam), 2023.
• Stephens CE et al. Dying with dementia in nursing homes: a population based study. Journal of the American Geriatrics Society, 2024.
5. Connecting environmental exposures to human health
UPDB research has linked air pollution exposure to outcomes including impaired fertility, intellectual disability, diabetes complications, and cardiovascular risk—informing clinical awareness and public health policy.
Representative studies
• Ramsay JM et al. Environmental exposure to industrial air pollution is associated with decreased male fertility. Fertility and Sterility, 2023.
• Grineski SE et al. Prenatal ozone exposure and risk of intellectual disability. Journal of Exposure Science & Environmental Epidemiology, 2024.
• Honda T et al. Ambient particulate air pollution and risk of complications in type 1 diabetes. Diabetes Research and Clinical Practice, 2025.
6. Improving understanding of suicide and mental health risk
Population wide UPDB analyses revealed strong familial and genetic patterns in suicide risk, including among individuals with no prior documented suicidality, supporting earlier and broader prevention strategies.
Representative studies
• Bakian AV et al. A population wide analysis of the familial risk of suicide in Utah. Psychological Medicine, 2023.
• Coon H et al. Genetic liabilities to neuropsychiatric conditions in suicide deaths with no prior suicidality. JAMA Network Open, 2025.
• DiBlasi E et al. Phenome wide diagnostic comparison among suicide deaths and living individuals with chronic pain diagnoses. BMC Medicine, 2024.
About Utah Driver License Data
Driver license information provides data that have been critical to many health studies. These are examples of how a scientist might use information obtained from the Utah Driver License Division:
- A researcher wants to study children’s health and exposures to lead in the environment. Zip codes from driver license records can help medical researchers determine areas with higher lead, for example in the local drinking water.
- Scientists want to study how body-mass index (BMI) affects the risk of many common diseases such as heart disease, stroke, diabetes, and cancer. BMI can be estimated from the height and weight reported on driver license records.
- To study a disease, scientists need to study healthy people to compare with people who have a disease. Driver license data provides location and related environmental information about people living in Utah who may not have a medical condition.
- Many scientists are now studying COVID-19 and how it spreads in the community. Driver license data are helping to understand the patterns of infectious diseases in our community since the data contain zip code information.
Information That May Be Disclosed by the Utah Driver License Division
- First, middle, and last name
- Gender
- Birth date and state/country of birth
- Mother’s maiden name
- Height and weight
- Street, city, state, and zip code of 20 most recent mailing addresses, including dates of change
- License type, class, status, issue and renewal date and manner, and any restrictions
Personal identifying information in the UPDB will only be retained as long as the University maintains a legal agreement with the Utah Driver License Division.
All use of data in the UPDB is done in accordance with privacy laws. Every research project that receives access to UPDB data is only granted the minimum necessary information to complete the study. To the extent possible, any personally identifying information are excluded from the information provided to researchers and researchers must adhere to strict policies for use of and access to the data.
Can I opt out of having my driver license information shared with the UPDB?
Yes. If you do not wish to have your driver license information included in the UPDB, please complete the steps described on this Utah Driver License Division form.
If my driver license information is already in the UPDB, can it be removed?
Yes. If your driver license information is already in the UPDB but you would like your personally identifying information removed, please print the Removal Request Form and follow the steps described. After the receipt and verification of the form, the PII in the UPDB will be removed within 90 days.
How Access is Approved
Access to the UPDB for health research is only possible after a complete review of the project. This includes reviews by the University of Utah’s Institutional Review Board (IRB) and Utah Resource for Genetic and Epidemiologic Research (RGE). Before access is granted, scientists must justify how the data will be used and explain the following:
- How they will store data securely
- Which researchers will access the data
- The length of the project
- How they will dispose of the data when the project is finished
A small number of approved staff have direct access to the personal identifying information in the UPDB for record linking and quality assurance. Access is strictly monitored to ensure legitimate business need. View more information on participating in research via our Research Participant Advocacy Community Resource.
How Your Data Are Protected
The University of Utah takes your privacy, including personal identifying information and health information, very seriously.
For this reason, University of Utah data security officers developed a protocol framework (Regulation 4-004). This comprehensive set of policies, guidelines, and rules are based on best-practice guidelines from the following:
- National Institute of Standards and Technology (NIST)
- Family Educational Rights and Privacy Act (FERPA)
- Federal Information Security Management Act (FISMA)
- Health Insurance Portability and Accountability Act (HIPAA)
- Health Information Technology for Economic and Clinical Health Act (HITECH)
- Payment Card Industry Data Security Standard (PCI) protocols
Resources
Questions about the information on this page can be directed to updbinfo@utah.edu.
Information for researchers is available at https://uofuhealth.utah.edu/huntsman/utah-population-database.