ST. GEORGE — Floyd Hatch lost his first sibling to heart disease 25 years ago.
Ten years later, Hatch lost a sister to the disease as well. And after Hatch was also diagnosed, he was left wondering, what is it about their family that made them susceptible to the disease, and could it have been prevented?
“It was so hard for our family to go through that. … We didn’t have enough research to really understand the problem,” Hatch said in a press conference Wednesday where Intermountain Healthcare announced a partnership with Icelandic company deCODE genetics to do just that.
The team has launched a population study to better understand how to treat and prevent genetic diseases by studying the genes of 500,000 people in Utah and Idaho.
The study, known as the HerediGene, is the largest and most comprehensive effort of DNA mapping from a single population in the U.S.
Patients being treated or receiving a blood draw at Intermountain hospitals will be given the opportunity to participate for free. Others who are interested in participating can fill out a form online. Those who choose to allow their DNA to be tested will sign a consent form, and then it will be tested for all kinds of gene mutations.
Patients who participate will have the option to receive a report of their genetic results if the tests show that they have a clinically significant gene mutation. After it is sent to the patient, the data from the tests will be submitted to medical professionals anonymously so that they can continue to study it and broaden their understanding of human genomes.
The results will then be used to help researchers understand how to predict and prevent genetic diseases such as breast cancer and heart disease.
“I have grown tired of young patients showing up at our cancer centers with advanced breast cancer, or colon cancer, or some other type of cancer, that they inherited and we could have know about that and prevented that if we had specific technology to understand it. Well, the day has come where we have that technology,” Lincoln Nadauld, chief of precision health at Intermountain Healthcare, said at the press conference.
Currently, Intermountain patients in Salt Lake City and St. George will have the opportunity to participate. However, the team expects to expand that to every hospital in the Intermountain Healthcare network. Sample collection for the study will continue to take place over the next five years.
The lab in St. George will be assisting with collecting, processing and sequencing the samples. The idea behind the project is to be able to study gene mutations so that the next time a patient comes in with the same mutation, they have a better idea of how to handle it.
“I think it gives these patients a lot of hope. I mean, to know that we are actively working on finding out what diseases they, or anybody, has,” Mickey Miller, lab manager for the Translation Science Center, told St. George News.
The partnership between Intermountain Healthcare and deCODE genetics will combine Intermountain’s precision medicine and clinical care programs with deCODE genetics expertise in human population genetics.
“The future is bright. The future is especially bright when an organization like Intermountain embraces innovation and seeks out world-class partners,” Marc Harrison, president and CEO of Intermountain Healthcare, said at the press conference.
deCODE genetics, owned by biotechnology company Amgen, is based in Reykjavik, Iceland, and is globally recognized for its work in analyzing human genomes. It has worked in discovering genetic risk factors for dozens of common diseases.
“I think there’s a certain beauty to this,” Kári Stefánsson, founder and CEO of deCODE genetics, said at the press conference. “The beauty of the three great collaborations between two institutions and the people of Utah. And I certainly look very much forward to participating in it and I can promise you we will make discoveries that can make a change.”
While the samples for the study will primarily come from Utah patients, the team expects that their research will benefit people around the world as treatments and prevention techniques will be developed.
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