Groundbreaking DNA Mapping Study Helps Utah Journalist Get Life-Saving Diagnosis Long Before His Health is Impacted

When long-time Utah journalist Keith McCord retired, he joked that the first thing he was going to do was take a nap.

He did just that, but he also got some surprising health news: by participating in the HerediGene: Population Study, a groundbreaking DNA mapping initiative led by genetic scientists at Intermountain Health, McCord learned that he had a hereditary disorder that causes extreme fatigue, among other symptoms.

As part of the global study, McCord learned he has hereditary hemochromatosis, a condition where his body stores too much iron. If left untreated, the condition can lead to heart problems, diabetes, liver damage, and potentially require a liver transplant — or worse.

“I feel good that I’m part of that because I wouldn’t have known otherwise,” he said.

Intermountain Health and deCode Genetics, a subsidiary of biopharmaceutical company, Amgen, based in Reykjavik, Iceland, are studying the DNA of more than 150,000 participants to discover new connections between genetics and human disease.

When appropriate, HerediGene: Population Study is also opening the door to genetic screenings for participants so they can learn about their risks for disease development and what actions they can take to protect their health.

That’s what happened to McCord.

Once HerediGene identified that McCord had a marker for hereditary hemochromatosis, further exams were done to confirm the diagnosis. He now undergoes therapeutic phlebotomy – the same process for donating blood – which lowers his iron levels.

“People like Keith are helping us move biomedical sciences along much faster than it would have happened in other ways,” said Howard McLeod, PharmD, principal investigator of the HerediGene: Population Study for Intermountain.

Study participants like McCord enable broader scientific study while also potentially enabling them to know about their own healthcare risks, which can lead to early interventions too, said Dr. McLeod.

“HerediGene participants help us out, and instead of finding out that he had serious health issues when he needed a liver transplant, Keith was able to find out at a point where he could be treated and avoid any of those major problems that were in his future,” added Dr. McLeod.

Now, therapeutic phlebotomy is just another part of his retirement routine, and he’s thankful for it, and HerediGene, which has helped him avoid major health problems.

“This is one of those things where people are going to learn more and more about what’s going on inside of us and that’s a good thing,” said McCord. “It’s going to make people live longer, feel better, all of that.”

Out of the first 100,000 HerediGene enrollments, more than 5,000 people are requiring additional genetic screenings and counseling so far.

Already, scientists have discovered the genetic underpinnings of vertigo, a condition that causes balance problems, and nonalcoholic fatty liver disease, which can lead to permanent liver damage.

These discoveries are just the tip of the iceberg, and are what Lincoln Nadauld, MD, PhD, founder of the HerediGene Study and Intermountain Healthcare Oncologist, calls extraordinary.

“All of them have an enormous impact on how we care for patients. It’s a huge achievement,” said Dr. Nadauld.

To participate in the HerediGene: Population Study, go to: HerediGene.org.

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