Those popular at-home DNA testing companies could be selling your data to make a profit

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KANSAS CITY, Mo. — Taking an at-home DNA test kit is easy.

You spit into a tube and send it back to a company. A few weeks later, you’ll get back information about yourself and your ethnicity, even possible health risks.

Although it might seem like a great opportunity, the issue of at-home DNA tests might not be as simple as it seems.

Kyle Kuhlman spends countless hours sifting through old family photos and documents — all in an effort to trace his family history.

“I was always curious. Like who is who? How am I related to that person?” Kuhlman said.

A couple years ago, some of Kuhlman’s questions were answered. He took an at-home DNA test through

His results weren’t exactly what he expected.

“The family story there was, ‘Oh, we’re Irish.’ When I got the DNA results back, it actually had like 6% Irish, but a ton was from the British Isles,” Kuhlman said.

Kuhlman is like many people, eager to discover more about their heritage. But there’s one thing he wasn’t prepared for — loss of privacy.

“My DNA is out there, and with that, anything that comes about from what they might do could be used through that service,” Kuhlman said.

Ancestry and 23AndMe are a couple of genome testing companies who sell collected data to third parties, namely pharmaceutical and consumer goods companies.

Ryan Pferdehirt, with the Center for Practicial Bioethics in Kansas City, said for that reason, people should think twice before sending away their DNA.

“You should be aware of what you’re signing and what you’re agreeing to. There are not nearly as many regulations as some may assume that there are,” Pferdehirt said.

It’s important to note that these companies cannot use your DNA for testing without your consent.

In 2017, the FDA approved 23AndMe’s testing for genetic health risks.

Now customers can have their DNA tested for genetic markers that could influence their likelihood of developing things like Type II diabetes and Parkinson’s Disease.

“What is wonderful is it starts conversations. It tells us what their concerns are,” said Mary Ryan with St. Joseph Medical Center. “What most people don’t realize is that it certainly doesn’t tell you everything about any particular disease.”

These tests might not tell you everything. But companies still plan on using the information for potential profit.

23andMe recently partnered with Trial Spark. According to their site, their goal is to match customers with nearby clinical study sites, based on what diseases their tests say they’re prone to.

Pferdehirt said people are more than their genetic makeup.

“There’s a big push within medicine with social determinants of health. To say that the social determinants are not a factor and it all comes down genetics is an unhealthy precedent to set,” Pferdehirt said.

While using data from DNA testing is growing in the pharmaceutical world, genealogist Kathleen Brandt said most people who take the tests are like Kuhlman — trying to track down family history.

But as we connect with our smaller communities, people are finding out we’re all the same.

“Let’s just say we’re more closely related than we want to be sometimes. We’re more closely related than we know that we are,” Brandt said.

From connecting with lost family members to companies making strides in the medical field, the possibilities with at-home DNA test kits have proved to be endless.

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