Genetics can tell us a lot about ourselves, from where we come from to our risk of developing disease. In Nevada, researchers are collecting this personal information in the largest health study of its kind in the world.
I met up with Jordan Stiteler in a local coffee shop in Reno, Nevada. She's a mom to a two-year-old boy, with another kid on the way, a girl. She recently got some interesting information about her family.
"I'm related to Jesse James, the outlaw, which I think a lot of people are," she said. "It's kind of weird."
Stiteler discovered this connection after she took part in what's called the Healthy Nevada Project. This statewide initative asks participants to provide a genetic sample, in this case, their spit. In return, they get free ancestry results and a genetic health screening.
It's how Stiteler discovered that in addition to interesting relatives, she has a genetic disorder called familial hypercholesterolemia, or FH. Basically, she has high cholesterol that's unaffected by diet and exercise.
"We're not like dwelling on it. We're not upset about it. It's just something that I have, and we're going to fix it," she said.
Since getting the results, Stiteler says she's drastically changed her lifestyle. She switched to a plant-based diet, and exercises more regularly now to avoid making her cholesterol levels even worse.
But the real finding for her has to do with something a little more personal. Stiteler lost her dad about ten years ago, the victim of a stroke at age 45.
"I always say we felt like my family was kind of cursed," she said. "Because there are men who are passing away really young and it's scary. We never really truly knew why, and this could be why."
Dr. Joseph Grzymski is the principal investigator for the project.
"Genetics offers a lot to the basic researchers," he said. "And now, we're finding that it's really important in a clincial setting."
Grzymski says the project started as an idea between the state-funded Desert Research Institute, an environmental research organization, and Renown Health, a Reno-based not-for-profit healthcare network. Together, the two wanted to understand how knowing your genetic information could help improve health by changing your behavior.
"That to me, is the trillion dollar question," said Grzymski.
He says he hopes this project will increase research infrastructure and funding, so his team can answer bigger questions about how genetics and environmental forces interact with each other. For now, the study is looking for three gene variants that are linked to colon cancer, high cholesterol and breast and ovarian cancer.
"For the 1.25% of the population that has one of those three conditions, we can do something about it before it's too late," Grzymski said.
The Healthy Nevada Project kicked off in 2016, and so far, has around 50,000 participants. Its aim is to eventually reach 1 million people across Nevada. Anyone can sign up, which is what makes it the largest community-based population health study of its kind in the world.
But it's a lot of personal data to have on file.
"It doesn't get more personal than your DNA," said Dr. Anthony Slonim, president and CEO of Renown Health.
"So, we have in the project a tremendous responsibility in ensuring that we are protecting that with the utmost care."
They've added several security layers. Slonim says no one involved in the project has access to both genetic data and personal health information. And unlike direct-to-consumer genetic tests like ancestry.com, participants in the Healthy Nevada Project are protected by a certificate of confidentiality from the National Institute of Health. That means law enforcement and other entities can't get access to the information.
Slonim hopes this protection encourages more people to get involved in the study. And that means more data.
"This provides us some insights about the issues of our community, not today, not tomorrow, but ten years hence," he said.
DNA sequencing company Helix provides the genetic analysis for the project. Co-founder Justin Kao says genetic testing has gotten significantly cheaper, meaning these types of tests can be done more.
"It's just another data layer, just like your annual physical, just like an annual cholesterol test. Where it's another data point your physician will use to help keep you healthier," he said.
Kao sees a future where physicians could search your digital genetic profile to find the right mix of treatments and medications based on your specific genes.
Participant Jordan Stiteler sees a future with less heartache.
"If it could save a family from going through what we went through, then I think it's totally worth it," she said.
Even though she misses her dad, she says finding out about her condition has given her some closure, and motivated other family members to get tested.
This story was produced by the Mountain West News Bureau, a collaboration among Wyoming Public Radio, Boise State Public Radio in Idaho, KUER in Salt Lake City, KUNR in Nevada and KRCC and KUNC in Colorado.
Copyright 2019 KUNR. Fore more, visit kunr.org.