BOUNTIFUL—A groundbreaking Children’s Genomics Study at Intermountain Primary Children’s Hospital is now offering more collection methods for children to participate. 

The HerediGene: Children’s Study is the world’s largest DNA mapping effort ever undertaken in kids. Intermountain Healthcare launched the study in 2020 with the goal of collecting 50,000 DNA samples from children ages newborn to 18 years to aid children access to future treatments and possible cures for genetic disorders, based on their unique DNA, according to a release. It is part of the global initiative HerediGene: Population Study for adults.

“My dad participated in the HerediGene study,” said Bountiful resident Elissa Smith. “He has terminal lung cancer but chose to do it. Now there’s a wider age range. That is part of why we got involved. My two sons who are 21 and younger and my 14 year old did it.”

It’s so critical, she said. “It’s the largest, historic study ever done in the population.”

Smith’s children gave a small sample of blood for the study. “They only take like 2.5 teaspoons of blood then it’s sent to the study,” she said. “It’s not uncommon to get your blood drawn. It’s just an extra draw and you’re already there.”

Even if a child isn’t getting lab work done they can still participate by giving a small blood sample or with a cheek swab that is a new option.

“In my work at Primary Children’s and as a father, I know that asking children to volunteer for a shot or a ‘poke’ to draw blood is a tall order,” said Dustin Lepson, administrator of Primary Children’s Hospital. “These new painless, convenient options and opportunities will remove barriers to participating in the study. This will give our researchers the information they need to discover and develop better treatments for kids and save lives.”

“You don’t hear back (with results) unless you have a genetic marker for a disease,” said Smith. “We took part for the greater good. It’s worth it if we could find a cure for cancer, MS, sickle cell, etc. They’ve already found some information.”

It’s important for the future of medicine, she said. “Will it fix my dad? No. He has three siblings who have already died, he’ll be the fourth. There is a genetic component to cancer. That’s why he chose to participate.” 

Smith and some of her siblings have also participated in the adult study. “I want to find a cure for it (cancer),” she said. “I don’t want to have to take my kids in for chemo – that sucks. We’re dealing with the opportunity to cure so many terrible things. We’re right on the cusp. We need to get involved to move the study forward.”