Utah is leading the world in genetic research because of the Utah Population Data Base (UPDB), a unique combination of state vital statistics, other medical profiles and genealogical records from The Church of Jesus Christ of Latter-day Saints.
“More human disease genes have been discovered in Utah than in any other place in the world,” explained Ray Gesteland, vice president for research and a genetics professor at the University of Utah.
That’s because the Church’s family history records provide invaluable information to a host of University of Utah and Huntsman Cancer Institute researchers involved in genetic data studies. The records tying one family to another and yet another provide a resource to medical personnel attempting to tie a genetic marker or cluster of markers to another generation.
“Huntsman Cancer Institute and our allied research facilities are very grateful that the original genetic research was started many decades ago at the University,” explains Jon M. Huntsman, Church leader and generous philanthropist who established the Cancer Institute, “This early work, together with the substantial progress our researchers are making today in multiple breakthroughs in order to cure diseases of all kinds, indicates that we are the leading center for genetic research throughout the world.”
For more than 30 years, the UPDB has served as a significant tool for discovering genetic patterns in disease transmission. The database now contains nearly 12 million documents, many generated from the original 185,000 family genealogical records contributed by the Church. The original family history records were copied, all by hand from paper copies, explained Dr. Geraldine P. Mineau, director of population sciences at the Huntsman Cancer Institute and keeper of the database.
Dr. Mineau, who became involved with UPDB soon after its inception in the early 1970s, recalls having a great relationship with the Church through its Family History Library, the largest genealogical facility of its kind in the world. “They did copying for us and gave us stacks and stacks of pages. They were so cooperative in letting us pull records” she said.
Selected family history records were based on three defining criteria: individuals had a life event — a birth, death or marriage — in Utah or on the Mormon pioneer trail.
Though the familial relationships are established through the family history information, medical research must be coupled with ancestral ties to uncover possible genetic connections to disease.
Discovering a genetic link to some cancers has been facilitated by information in the UPDB as well as the Utah Cancer Registry, a forward-thinking record system established by Dr. Charles Smart in 1966.
The combination of all the available records can suggest that a particular cancer may be inherited.
Such family links, explained Dr. Gesteland, “would make us suspicious that there is a version of a gene within that extended family that is predisposing people to cancer. If that’s the case, we’d get blood samples from family volunteers, from both the affected and the unaffected folks, and by analyzing the DNA, see if there is some gene that is inherited in the same pattern through the family as the cancer is. Then we can focus on that particular gene, looking at larger populations.”
Clark Hirschi was recently part of a study at the Huntsman Cancer Institute after his father was diagnosed with prostate cancer. Because prostate cancer was prevalent in his family, Hirschi was tested and found with developing prostate concerns. Since he was checked early on, measures have been taken to prevent or thwart off the cancer — something that may have been too late if he had waited.
“I would have been glad to participate in the test regardless of what I had been diagnosed with,” Hirschi said. “I hope the research will be able to help many in the long run. That is the hope that makes the effort worth it.”
Although family history records provide an important link to medical genetics research, University of Utah scholars also note other factors that contribute to successful studies in Utah.
“You can’t do genetics if people just have one child,” Mineau explained, suggesting the higher Utah birth rate provides a broader study pool. Statistically, Mormons also have a longer and a healthier life span; they abide by a health code that discourages smoking and drinking and encourages a nutritious diet.
In addition, Utah families, on the whole, know their relatives, suggested Dr. Lorris Betz, senior vice president of health science and CEO of the University of Utah health system. “The state population, unlike research pools in other parts of the country, is a most cooperative group. We routinely get participation rates as high as 60 percent, while most areas get only 20 to 25 percent. We’ve had researchers invited to family reunions to draw their blood samples for studies. That’s a very efficient way for us to collect valuable information.”
The cooperative Utah population and the accessible family history records result in significant medical genetics research findings.