Health past can change future
One death certificate at a time, the story began to unfold.
As Starr Hailey Campbell mapped out her family health history, she began to realize the breast cancer she is battling today may have roots in her kin's DNA, stretching back at least three generations.
Her father died of kidney cancer. Her grandfather died of stomach cancer. Her great-grandfather also died of cancer.
By sharing this past, Campbell hopes she can change her family's future.
Family health history, experts say, can play an important role in preventing diseases because many result from a combination of gene mutations, your environment and your lifestyle.
While you can't rewire your DNA - not yet, anyway - you can watch your diet, exercise more and schedule early health screenings for illnesses you are at most risk of getting.
"It really does combine genetics and environment, as it looks at which family members have or have not had various health problems," said Ted Adams, who works at LDS Hospital's Health and Fitness Institute and the Cardiovascular Genetics Research Program at the University of Utah School of Medicine.
"It's a wonderful tool for health promotion as well as disease prevention," Adams said.
A Centers for Disease Control and Prevention survey showed 96 percent of Americans believe knowing their family health history was important, yet only 30 percent had collected information from their relatives.
The first step? Sit down with your clan and start plotting who has what and at what age they were diagnosed. Family holiday gatherings are the perfect time to start.
Personalized medicine: Family medical histories can identify people at risk for diseases such as cancer, diabetes, depression, even suicide, and are being used to personalize medicine, said Marc Williams, director of the Intermountain Clinical Genetics Institute in Salt Lake City.
Rather than give everyone the same prevention tips and screenings, physicians can recommend mammographies or lipid profiles, for example, for those who might be at higher risk for breast cancer or heart attacks.
Because medical pedigrees also capture a family's shared environment and cultural attitudes that affect their health, a family tree can in many ways be more useful than a genomic scan.
"The reality is we've had a tool that is effective to do personalized medicine for a long time," Williams said. "We just haven't taken advantage of it."
Genes - segments of DNA that determine specific traits, such as eye or hair color - are inherited from a person's parents, explained Jenny Johnson, a health educator for the Utah Department of Health's Chronic Disease Genomics Program.
When a gene changes, or mutates, that mutation is passed on to children and can sometimes result in disease, she said. Most health problems result from both genetic makeup and the way a person lives.
While many Utah families know their lineage, knowing health history can be a culturally distinct issue, said Janet Williams, a genetic counselor at the Genetics Institute at LDS Hospital.
"Some families talk about their health problems. Some families are very private about their health problems," she said.
The Genetics Institute is part of a national effort spearheaded by the non-profit Genetic Alliance, which is developing tools and questions that take cultural differences into account, she said.
Helping families prevent disease: In the 1980s, Utah became an early pioneer in using family medical history to improve public health.
The late physician Roger R. Williams discovered that just 14 percent of the state's families contributed to 72 percent of Utah's early coronary deaths. That prompted him to create the Family High Risk Program, which distributed a family health questionnaire in Utah high schools between 1983 and 1999.
A large family tree was designed to collect three generations of a family's medical history.
More than 151,000 families participated. Of those, 17,064 were identified as high risk for coronary heart disease, and another 13,106 as high risk for stroke.
The Utah Department of Health offered health advice and follow-up to 8,546 of the high-risk families.
"The program was the longest and one of the only programs that I know of anywhere that has ever used family health information to help families prevent disease," Johnson said.
The Utah researchers discovered that families who for generations had been dying of heart attacks in their 40s were willing to make lifestyle changes and start using medications, she said.
"Families who do their family health history and identify they are at increased risk - when given the information, they will make behavior changes," she said.
The University of Utah has since used the program's data to recruit families for heart disease studies, Johnson said. New research on how many of the high risk families made lifestyle changes - and maintained them - is expected to be published soon.
Also, an online pilot version of the questionnaire is almost ready, Adams said, and will be made available on the Web.
"What do we need to know?" Surveying her family medical history inspired Marian Gleason to change her life.
Her maternal grandfather died of a heart attack at 48. All seven of his sons - Gleason's uncles - had heart attacks and open heart surgeries in their 40s, and two of his four daughters, including Gleason's mother, died of heart attacks.
Gleason's father also died of a heart attack - at 63.
Now Gleason, 67 and the oldest of 10 children, is among only a handful of her siblings who haven't had a heart attack or open heart surgery. Diagnosed with diabetes type two several years ago, she adopted a healthier diet and became more active - exercising and taking a job in a bakery - and shed 45 pounds.
"When I passed 63, I was excited," she said.
Campbell, a professional genealogist, hopes that sharing her family health history with her children and grandchildren can spare them the surgeries, radiation and chemotherapy she has endured as a breast-cancer patient.
Her 26-year-old daughter, for example, is slated to receive her first mammogram in two years - earlier than most women, who don't usually begin getting the X-rays until their 40s.
"It's just a matter of knowing what the [family health care] history is and being really proactive with your own health care and going in to your doctor and saying, 'Look, I have a history of this and a history of this and a history of this - what do we need to know?' '' Campbell said.