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Intermountain Healthcare teams up with deCODE genetics to identify diseases before they happen
Doctor says effort will help Utahns with inherited risks avoid cancers, other illnesses
By Wendy Leonardwleonard@deseretnews.com
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Lab technician Veronica Castro de-identifies tissue samples at tIntermountain Biorepository in South Salt Lake on Wednesday, June 12, 2019.
Kristin Murphy, Deseret News
David Crockett, executive director of Intermountain Biorepository, shows a de-identified tissue sample after a press conference at the facility in South Salt Lake on Wednesday, June 12, 2019, to unveil the HerediGene: Population Study, which will focus on discovering new links between genetics and human disease.
Dr. Lincoln Nadauld, chief of precision health at Intermountain Healthcare, Dr. Marc Harrison, Intermountain president and CEO, and Floyd Hatch, a patient who has done DNA testing, attend a press conference at Intermountain Biorepository in South Salt Lake on Wednesday, June 12, 2019, to unveil the HerediGene: Population Study, which will focus on discovering new links between genetics and human disease.
Lab technician Brandon Wilde de-identifies tissue samples at Intermountain Biorepository in South Salt Lake on Wednesday, June 12, 2019.
Lab technicians de-identify tissue samples at Intermountain Biorepository in South Salt Lake on Wednesday, June 12, 2019.
Dr. Lincoln Nadauld, chief of precision health at Intermountain Healthcare, speaks during a press conference at Intermountain Biorepository in South Salt Lake on Wednesday, June 12, 2019, to unveil the HerediGene: Population Study, which will focus on discovering new links between genetics and human disease.
Dr. Marc Harrison, president and CEO of Intermountain Healthcare, speaks during a press conference at Intermountain Biorepository in South Salt Lake on Wednesday, June 12, 2019, to unveil the HerediGene: Population Study, which will focus on discovering new links between genetics and human disease.
Floyd Hatch, a patient who has done DNA testing, speaks during a press conference at Intermountain Biorepository in South Salt Lake on Wednesday, June 12, 2019, to unveil the HerediGene: Population Study, which will focus on discovering new links between genetics and human disease.
SALT LAKE CITY — Utahns will soon be making history in a way that will "change the face of medicine in the United States and beyond," the CEO of Intermountain Healthcare says.
All Dr. Marc Harrison's asking for is two vials of blood — from 500,000 of us.
Utah's largest health care system on Wednesday launched what Harrison calls "a groundbreaking study," "the largest of its kind" involving the study of the genetics of a population.
"It has the potential to change the way we think about disease and how it is going to happen in the future," he said. "If we do this right, and believe me we will, Utahns will provide a DNA map for the world in terms of how genomics can influence the health of a population."
Intermountain is teaming up with deCODE genetics, an Amgen subsidiary and a global leader in human genetics, to analyze the genomes of 500,000 patients throughout its network of clinics and hospitals in Utah and Idaho over the next five years.
The HerediGene: Population Study has already begun collecting samples from consenting patients across Utah, and researchers expect to publish data derived from the study along the way.
The samples will be de-identified and made anonymous for the study.
But Dr. Lincoln Nadauld, chief of precision health and an oncologist at Intermountain, said if they do identify a gene that exhibits a health risk, those individuals will be notified and connected with Intermountain genetic counselors for the proper screenings and treatment.
"We, and I personally, have grown tired of young people showing up in our cancer centers with advanced breast cancer, or colon cancer or some other kind of cancer that they inherited," Nadauld said. "We could have known about that and prevented it if we had sufficient technology and understanding.
"Well, the day has come that we have that technology," he said. "We have those capabilities now."
With the launch of the HerediGene project, Nadauld said, "we'll begin to understand who in our communities, who in our populations are at risk for these kinds of cancer, or heart disease or other health conditions, and we'll be able to intervene and prevent that.
"No longer do we have to wait for these young parents, young members of our communities showing up with advanced diseases before we take action."
Dr. Kári Stefánsson, president and founder at deCODE, said the collaborative effort is "a dream come true." He is excited to work with Intermountain, which he called "one of the best providers of health care in the U.S.," akin to health care efforts across Scandinavia, which he said are "focused on their societal responsibility."
The Reykjavík, Iceland-based company, Stefánsson said, has been working to analyze the genomes of the entire Icelandic population, to identify common diseases there and assist with advances in medicine and diagnostics.
"I can promise you we will make discoveries that will make an impact," he said Wednesday.
Nadauld said it is an opportunity for 500,000 patients — most of them Utahns — to obtain a detailed genetic analysis at no cost to them, as Intermountain is covering the expense of the collection and analyses involved in the study.
Nadauld said a person's genome consists of 46 chromosomes (inherited from mom and dad), which each include 20,000 genes and 3 billion base pairs. There is a copy of that genome in every cell in the human body.
The HerediGene study will screen for 59 genes that have been identified as "clinically adaptable," or that lead to conditions that can currently be treated, Nadauld said. It is much like newborn screening efforts, but for adults.
In 2003, he said, a single genomic analysis would've taken 10 years and cost $3 billion. Intermountain now has the ability, with the help of deCODE genetics, to perform an analysis in a couple of days at the cost of a few hundred dollars each.
"This affirms Utah as an epicenter of genetics," Nadauld said.
The information derived from the study, he said, has the potential to directly impact Utahns, and especially those who volunteer to participate in the study.
Courtney Hatch, a high school art teacher who lives in Sugar House, carries at least two defective genes from her father's side, including one that has led to Type 1 diabetes.
The other, she said, could land her in the hospital with heart problems, if not kill her.
Previous research opportunities identified the diabetes a year before it caused complications for her, and the 28-year-old said she was able to "ease into diabetes" at a younger age, which meant lower risk for potentially harmful glycemic issues throughout her life.
"I don't like being caught unaware," said her mother, Carol Hatch, of Holladay. She said everyone faces trials, but knowing the potential for something horrific can help people prepare and possibly prevent it from happening.
Her husband, Floyd Hatch, lost two siblings to heart disease, both at young ages, and, at the time, for unknown reasons.
"It was so hard for our family to go through that," he said, adding that at the time, they believed his 23-year-old brother's sudden death was some kind of "glitch."
But his own need for health care — after living an active life, including 41 marathons, hunting expeditions and travel around the world — led to the discovery of PKPT, a gene that has the potential to produce sudden arrhythmias that could lead to death.
"I will always wonder what took my brother and my sister," Floyd Hatch said Wednesday. "Is there a relationship between that and the three generations that now carry this gene and how it works into that?"
The Intermountain study, he said, will give his family the information it needs to help its future generations live better.
"It could happen to anyone," he said. "It is something we all need to know and understand."
Any patient who arrives to receive care at an Intermountain facility and has a corresponding standard lab blood draw order from a physician, Nadauld said, will have the opportunity to participate in the study. At some point, Intermountain may begin recruiting patients without an existing lab draw order.
Harrison said the study is likely to appeal to Utahns, who are already known for their passion for genealogy and family history work. He expects a lot of volunteers and said it will do a lot of good, locally and globally.
Health, he said, is also determined by where someone lives, family history and environment, among other factors.
The HerediGene project will help researchers and pharmaceutical companies better figure that out, as Harrison said it will help "identify diseases and predispositions to disease well before they actually afflict people."
No one else has access to a population like this or is undertaking such an effort, Nadauld said.
"It is unique. There is nothing like it attempted ever before," he said. "And, when we're successful at it, there will have been nothing like it accomplished before."
For information about the HerediGene: Population Study, visit intermountainhealthcare.org/heredigene.
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