Intermountain Health study offering free genetic testing will end this month

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SALT LAKE CITY — Intermountain Health will be pausing enrollment on the HerediGene: Population Study, which gives anyone interested an opportunity to get genetic testing for various diseases at no charge.

“We have been incredibly appreciative of the community support and willingness to participate in the HerediGene: Population Study. The genetic discoveries from this study have been monumental,” Brad Gilman, an Intermountain spokesman, told KSL.com.

“Because of these efforts, we have reached a point where we will be pausing the enrollment of this study as of Dec. 28. This will allow us to focus on returning results to the participants and generating more discoveries,” he said.

Intermountain HealthCare launches HerediGene project June 12, 2019.
Intermountain HealthCare launches HerediGene project June 12, 2019. (Photo: Mary Richards, KSL NewsRadio)

Until then, people interested in getting the genetic testing can sign up online, or simply go to any Intermountain lab and say they want to participate. Less than 2.5 teaspoons of blood is necessary for sequencing, Intermountain Health’s website says.

The study is the largest DNA study in the United States, and has been ongoing since mid-2019. It aims to improve health care intervention for anyone at risk of serious diseases, and to help prevent chronic illnesses like diabetes, heart disease and cancer. All U.S. residents 18 and older are eligible for participation.

HerediGene has already changed the lives of many Utahns.

Former KSL-TV reporter Keith McCord discovered through the study he has genetic markers for hereditary hemochromatosis, which can be managed with treatment but may have irreversible health implications if left untreated. He discovered his diagnosis before any symptoms arose.

Three generations of Elissa Smith’s family got the free risk assessment after her father survived colon cancer.

Elissa Smith, her husband, and their four children enrolled in Intermountain Healthcare's HerediGene: Population Study after her father's cancer diagnosis. The study looks at the link between genes and human disease.
Elissa Smith, her husband, and their four children enrolled in Intermountain Healthcare’s HerediGene: Population Study after her father’s cancer diagnosis. The study looks at the link between genes and human disease. (Photo: Intermountain Health)

The study informed Madison Certonio she has the BRCA2 gene, which causes women to have between a 45% and 85% chance of developing breast cancer in their lives, and men to have between a 20% and 50% chance of developing prostate cancer.

“It’s been a little stressful. It’s been a little emotional,” she said in an promotional video produced by Intermountain. “But then you have to be happy because you know (the risk). Since I’m 25 and I know, I can get all the screenings done to prevent it, because knowledge is power.”

Participants who do not bear any genetic markers will not be contacted by Intermountain; but if markers are discovered, they will be contacted by phone or letter to schedule an appointment with a genetic counselor should they wish to find out what the gene is.

A large sequencing sample — regardless of whether an individual participant has a harmful gene — is useful to doctors and scientists in discovering new genetic risk factors and treating existing patients.

“We anticipate spin-off studies that will target the genetics of specific diseases will occur over the next several years,” Gilman said. “Intermountain Health continues to be committed to precision medicine to help our patients, and their families, live the healthiest lives possible.”

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Katie Workman is a former KSL.com and KSL-TV reporter who works as a politics contributor. She has degrees from Cambridge and the University of Utah, and she’s passionate about sharing stories about elections, the environment and southern Utah.

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