Genealogy is helping scientists at Huntsman Cancer Institute prevent cancer in some patients with inherited genetic disorders that predispose them to the disease.
The Pioneering Mutation
In 1840, during the Second Great Awakening, Lyman Hinman was among many who converted to what has been called the Latter-Day Saint movement, often nicknamed the Mormon religion. He lived in Massachusetts with his wife, Aurelia, and five children at the time. Three years later, Lyman closed his business and moved his family to the Mormon settlement in Nauvoo, Illinois. Less than a year passed before the faith’s prophet and leader Joseph Smith, Jr., was murdered by a mob in the summer of 1844. After his death, mobs continued to attack the community living in Nauvoo, destroying property and murdering several other people. Aurelia’s brother came to the town, trying to convince the Hinmans to return to Massachusetts with him, but the couple turned him down and decided to leave Nauvoo to travel west.
The family spent the years of 1845-1847 traveling in Iowa. They survived on anything they could find, picking crab apples, shooting down hawks, and boiling elk horns. They were so low on food, they’d eat even the smallest fish they could catch—sometimes raw. They survived near-misses with freezing to death.
In 1848, the Hinmans left Winter Quarters, Nebraska with the Brigham Young Company, traveling by wagon. They still had very little food and the children developed sores. Despite that, they reached the Salt Lake Valley just before the fall of that year.
The first years in the valley were very difficult, and saw the Hinmans still struggling to survive. They ate moldy corn during the winter and thistles during the summer. Aurelia grew so sick with scurvy that she lost all her teeth.
Despite all this, the family survived and, with them, a genetic mutation that predisposed their descendants to colon cancer. At least two of the Hinman’s five children carried the mutation.
The Genealogical Database
Latter-Day Saints, commonly referred to as Mormons, are famed for their genealogy. The religion maintains the largest collection of genealogical records on earth. These physical records include more than 3.5 billion images, which are collected not only by members of the church but through agreements with archives, libraries, and other religious institutions.
Before the internet, the church sent employees around the world to collect records. In the 1970s, a team arrived in Italy, where they met an American PhD student, Mark Skolnick, who was using parish records to make his own database for his thesis, which examined how genes spread as people moved through the area.
While helping translate records for the Mormon church’s team, he realized the potential of the church’s database for medical research. After finishing graduate school, Skolnick moved to Utah and got a job at the University of Utah as a researcher.
The church allowed Skolnick to copy records of all the pioneers who had traveled the Mormon Trail—186,000 pages of data covering 1.6 million people, including the Hinmans. He and a team of typists combined the data with the state’s cancer registry and turned them into a digital database. It was the beginnings of something that would later be called the Utah Population Database.
In 1999, according to Jon Huntsman, Sr., the Mormon church allowed more of their genealogical records to become part of the database with the building of Huntsman Cancer Institute.
By 2011, it contained 7 million people.
Today, it contains more than 17 million names according to Jon Huntsman, Sr., and it supports research of all kinds: public health, epidemiology, demography, and genetics. It includes demographic and medical information like birth records, diagnostic records, death records, hospital discharge records, and surgical records. Some of its pedigrees are more than 12 generations long. The database has contributed to over 200 research projects.
Recently, the Mormon church agreed to add 100 million new records.
The Potential of a Family Tree
During the early part of the 1980’s, a doctor named Randall Burt at the University was among a group of gastroenterologists seeing patients with strange colons covered in growths that looked like mushrooms. Huge parts of their families had been killed by colon cancer and, if left untreated, the growths in the patient’s colons—called polyps—could turn into cancer.
One such patient is named Gregg Johnson. He started seeing Burt for colonoscopies after his mother died of colon cancer. His grandmother and great-grandmother had also died due to the disease.
Burt and his team turned to the Utah Population Database, suspecting a genetic mutation.
Very slowly, the team proved it was a mutation with a 50/50 chance of being passed on. They traced it back to Lyman and Aurelia Hinman, Gregg Johnson’s great-great-great-great-grandparents.
Burt later retired, but the work continues. Scientist Deborah Neklason took over his research, working out of Huntsman Cancer Institute, which now maintains the database.
Colon cancer isn’t the only type of cancer for which the Utah Population Database has been used. Researchers also used it to find the famous BRCA1 gene for breast cancer and a gene called p16 for melanoma.
Finding a gene in which a mutation predisposes people to cancer means that patients can be tested for the mutation. If they have it, they can be identified as high-risk patients and receive healthcare that seeks to delay or even prevent the onset of cancer--like for Gregg, who has been participating in studies at Huntsman Cancer Institute for about 30 years now.
Learn about the differences between family history pedigrees and genetic pedigrees, and find out how they can communicate so much information to help scientists better understand things like Gregg's cancer.
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