Saving the living while saving the dead
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For generations, Latter-day Saints have focused on family history as a way of saving the dead. Jon M. Huntsman Sr. knows that it, literally, can save the living.
Proof of that is coming out of the Huntsman Cancer Institute and its work in using data collected in family history and genealogy records.
An Area Seventy, Elder Huntsman and his wife, Karen, are principal forces in the war on cancer that they wage from the Huntsman Cancer Institute located on the campus of the University of Utah.
An industrialist and philanthropist, Elder Huntsman has a personal stake in the battle: both of his parents died of cancer and he is a cancer survivor. Having made a fortune in industry and business, Elder and Sister Huntsman have committed to using their resources to wipe out "this horrible and dreaded disease of cancer."
In 1993, they donated $10 million to establish a cancer institute at the University of Utah; the university's cancer program gained in 1986 National Cancer Institute designation as a Cancer Center, with an emphasis on genetics research as a way to understand, diagnose and treat cancer.
The Huntsmans intensified their campaign against cancer in 1995 when they contributed $100 million from family funds, to construct a state-of-the-art cancer center.
Ground was broken in 1996 for the 231,118 square foot Huntsman Cancer Institute, a research, treatment and education facility.
During the ceremony to break ground for the institute, reference was made to the Church's vast collection of genealogical records in the Family History Library as a research resource. At that ceremony, President Gordon B. Hinckley alluded to many past charitable and philanthropic contributions Elder and Sister Huntsman and their children have made to benefit people throughout the world, and then said: "Jon, you've done a lot of remarkable things in your life. You've accomplished tremendous things, but you will not do a thing of greater significance in terms of human happiness, release from pain, the avoidance of suffering, than that which will come of the very generous thing which you are now doing."
Elder Huntsman's battle cry against cancer is powerful: "We must conquer it. We must not let it continue. One in three of us, at one time or another in our lives, will be afflicted with this horrible disease. It crosses all boundaries. It knows no face. It knows no ages. And it knows no races. It destroys families and it breaks hearts. It is no respecter of persons. Cancer must and can be stopped."
In the mid-1990's, the institute established the Familial Breast Cancer Clinic and the Familial Colon Cancer Clinic to conduct research into genetic causes and inheritance patterns of breast and colon cancer. The Huntsman Cancer Institute was dedicated in 1999, and its patient care center opened. In 2000, Elder Huntsman donated another $125 million to fund ongoing cancer research and construct the Huntsman Cancer Hospital, which was dedicated in 2004. Elder Huntsman recently announced that additional funds have been donated to double the size of the Huntsman Cancer Hospital, commencing this summer.
The institute has established: a special populations outreach to further its efforts among minority populations; the Familial Melanoma Research Clinic to conduct research into genetic causes and inheritance patterns of skin cancer; the Sarcoma Array Research Consortium to develop a molecular classification for sarcoma tumors; the only comprehensive facial prosthetics service in the Intermountain West to aid patients with the replacement of missing features due to injury, cancer treatment, or birth defect; and the Pancreas Cancer Research Program in an effort to change the incidence and outcome of this rare yet deadly disease.
In an interview with the Church News, Elder Huntsman said that it was at the groundbreaking ceremony that he first heard it mentioned that family history records or genealogy records submitted by people who had done work in family history "were not only helping their dead but were as critical in helping those who are alive, and that people can live longer and more pain-free lives. President Hinckley said, in effect, that the Lord had more than one purpose in mind for family history."
Elder Huntsman said, "If we go back to the early genetic research that was done here at the University of Utah because of the various banks of historical data of families, we are by far the largest in the world; we have over 8 million people in our data bank of people where we can identify their genealogy, which means about 80 percent of the patients who come in from the Intermountain West — the areas of Montana, Idaho, Utah, Nevada, Colorado, Wyoming, and parts of Arizona — that were settled by Latter-day Saints.
"We have established research clinics that can evaluate their family history of cancer and from their DNA see if they have a higher proclivity for breast cancer or prostate cancer or colon cancer. It is absolutely breathtaking to think of this. (To maintain the confidentiality of the people maintained in this data, the records are numbered with only a small group that has the ability to link the data back to names.) This is the only place in the world this can happen. We have researchers coming in who want to understand how they can replicate our system. It is because of the Church's genealogy records that this gene research got started."
He said that "two great genetics centers" at the University of Utah preceded the Huntsman Cancer Institute, the Eccles Institute of Human Genetics, and a research site of the Howard Hughes Medical Institute. "The reason all three of us have been here is because of the Church's records. Look at what has been developed. We've discovered the APC cancer gene, which was one of the critical genes of colon cancer; and the BRCA 1 and the BRCA 2 genes, both genes of breast cancer, and a number of others for other cancers."
Among Huntsman Cancer Institute's many success stories is the announcement earlier this year that the genetic change that causes one type of colon cancer in the United States has been traced all the way to its origins. Research involved two large families, one in Utah, the other in New York. Huntsman researchers discovered a founder mutation — a mutation that has been traced from many individuals in the present-day population back to a common ancestor — which might contribute to a significant percentage of colon cancer cases in the United States.
Researchers studied the two families that carry a specific genetic mutation responsible for increased risk of colorectal cancer. They discovered that the families share common ancestors — a couple who came to North America from England in the 1630s, about the time of the Pilgrims.
"The fact that this mutation can be traced so far back in time suggests that it could be carried by many more families in the United States than is currently known," said Deborah Neklason, Ph.D., a University of Utah research assistant professor and leader of the study. "In fact, this founder mutation might be related to many colon cancer cases in the United States."
The mutation causes a condition called attenuated familial adenomatous polyposis (AFAP). Without proper clinical care, people with the AFAP mutation have a greater than two in three risk of colon cancer by age 80, compared to about one in 24 for the general population. Yet the cancer can be prevented with proper screening and care.
"Knowing one has the condition can be life-saving," Dr. Neklason said. "Not only are affected individuals at greater risk than the general population as they grow older, but precancerous polyps are often found in mutation carriers in their late teens and colon cancer has been diagnosed in individuals in their 20s."
The Utah family in this study has more than 7,000 descendants spanning nine generations recorded in the Utah Population Database (UPDB), a shared resource for genetics research housed at the Huntsman Cancer Institute. Researchers use UPDB to identify and study families that have higher than normal incidence of cancer or other disease, to analyze patterns of genetic inheritance, and to identify specific genetic mutations.
Known individuals in this one family account for 0.15 percent of all colorectal cancers reported in Utah from 1966 to 1995. Based on that percentage, researchers expected to see eight cases of colon cancer from this family among the more than 5,000 reported between 1996 and 2003. But after previous research identified this family as affected by AFAP, aggressive education and clinical intervention resulted in only one mutation carrier in the family being diagnosed with colon cancer during those years.
"Preventing seven cancers may not sound like much," said Dr. Neklason. "But that's seven colon cancers that didn't devastate this family."
Though he knows the battle is far from over, Elder Huntsman can't resist thinking of the day the building housing the Huntsman Cancer Institute and Hospital can be put to another use. "It would make a great five-star hotel," he said, looking forward to the day when all such become obsolete because "this horrible and dreaded disease of cancer" has been wiped from the face of the earth.
E-mail to: gerry@desnews.com
