Data Is Knowledge, Knowledge is Power
Data is powerful. At Huntsman Cancer Institute (HCI), it can even help prevent cancer.
HCI is the home of the Utah Population Database (UPDB), a shared data resource that tracks family medical history through many generations. It helps researchers find genetic clues to show whether individuals may have a higher risk of developing cancer.
Ken Smith, PhD, UPDB director, says the database collects genealogies, medical records, and vital records such as birth and death certificates for about nine million individuals. "When we combine all these together, we're able to identify Utah families that have higher than normal rates of certain diseases, like certain cancers."
Emily is a member of one of those families. Her grandmother, aunt, father, and sister were all diagnosed with cancer. Emily and her siblings had genetic testing done and discovered four out of five of them had Lynch Syndrome, an inherited disorder that increased the risk of many types of cancer.
Emily says that knowledge encouraged her to take preventive measures. "My sisters and I have had full hysterectomies to reduce the risk of uterine and ovarian cancer. We're doing yearly checkups with the dermatologist. We do colonoscopies once a year," she explains.
She says because of her family history, she worries about her children's risk for cancer, but she's grateful for the information that UPDB makes available. "I think I'm always just a little bit ahead of the game," she says. "I'm so grateful for that knowledge because I think knowledge is power."
Vice President Joe Biden agrees. He recently visited HCI and said he wants to see the UPDB available at a national level. Dr. Smith hopes HCI can help make that happen. "I think we are a great model for how data that state governments and local agencies collect every day can be used. When you effectively link those records together, you create an amazing resource for research and improving clinical care."
Huntsman Cancer Institute (HCI) is a National Cancer Institute (NCI)-Designated Comprehensive Cancer Center, which means it meets the highest standards for cancer research and receives support for its scientific endeavors. HCI is located on the campus of the University of Utah in Salt Lake City and is a part of the University of Utah Health Care system. HCI treats patients with all forms of cancer and operates several high-risk clinics that focus on melanoma and breast, colon, and pancreas cancers, among others. HCI also provides academic and clinical training for future physicians and researchers. For more information about HCI, please visit www.huntsmancancer.org.