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SALT LAKE CITY — Twenty black diamonds are spangled across six generations of Gregg Johnson's family tree. Each one represents a family member who died of colon cancer.
"Before Huntsman was Huntsman, it was apparent there was something going on in our family with regards to colon cancer," Johnson told an audience of about 100 people at Huntsman Cancer Institute on Wednesday.
They had gathered to take part in a nationwide brainstorming session — held simultaneously at more than 270 locations across the U.S. — as part of the White House's $1 billion cancer "moonshot" initiative.
Genetic testing revealed that Johnson's family had a genetic mutation that made him almost 100 percent likely to develop colon cancer by the time he turned 30, Johnson said.
Now, due to regular colonoscopies and the removal of hundreds of precancerous polyps every year, Johnson has been able to stay cancer-free.
So, too, have his children, nieces and nephews.
"I've outlived my mother now by 15 years," Johnson said. "And I'm hoping it's another 15 years beyond that."
Vice President Joe Biden was tapped by President Obama last year to lead the cancer "moonshot" initiative after Biden's son, Beau, died of brain cancer.
The goal? To double the progress of cancer research and eventually eradicate the disease entirely.
Biden joined the event at Huntsman via a livestream from Howard University in Washington, D.C., where he made an emotional appeal to researchers watching across the nation.
"Millions of people are desperately looking for hope. … They don't give up. They hang on," the vice president said. "They're like our son, in the last days: 'Dad, I'm not afraid. I'm OK. Keep going.'
"One of the reasons I so desperately wanted this to occur is to reinvigorate the country with the notion that we're in this game, man. We're in it up to our hips, up to our ears," Biden said. "To let people across the nation once again believe that we can do anything."
At the Huntsman event, which was streamed online via Facebook Live, many researchers discussed expanding the use of the genetic testing that likely saved Johnson's life.
Huntsman Cancer Institute is the steward of the Utah Population Database, the largest genetic database in the world. The combination of the University of Utah's genomics expertise and local families' detailed genealogical data has been key to discovering several genes responsible for certain forms of breast and colon cancer.
But patients and community health workers also urged researchers not to forget about underserved populations.
Marjan Champine, a genetic counselor at Huntsman Cancer Institute, said access to research trials and counseling can be hard to come by in rural areas.
Research and technology can fill in the gaps, Champine said. A Huntsman-led study that compared telephone and in-person genetic counseling concluded that telephone counseling had the same satisfaction rates but was more cost-effective for reaching rural patients, according to Champine.
The institute now offers genetic counseling via telephone to patients in largely rural states like Wyoming and Idaho, and are looking to expand further in the next few years, she said.
Panelists said managing big data and data exchange also represents a challenge.
The medical community often has robust and even real-time data on patients, according to Huntsman Cancer Institute senior director of clinical affairs Dr. John Sweetenham. The problem, he said, is extracting it and sharing it.
Instead of working in secretive silos, Sweetenham said researchers should have access to "one big dataset."
"If this is going to work," Sweetenham said, "it means a big culture shift in the way that academic medicine and basic research is run right now."
Mikaela Larson, who manages a program called Total Cancer Care at Huntsman, said an experimental program between nine cancer centers across the nation called ORIEN will attempt to prove the benefits of data sharing.
Patients, when asked, tend to be willing to share samples and data to advance cancer research, Larson said.
According to Sweetenham, it's the researchers who have to change their mindset.
"He said, 'Be more collaborative,'" Sweetenham said, referring to Biden's many speeches about the cancer moonshot initiative. "This is a chance to put aside the normal limitations that we place on our professional boundaries and break those down."
