TAYLORSVILLE — In the era of inexpensive DNA kits, companies are starting to offer home health screenings and genetic testing. But the results could have a big impact.
There are tough questions you need to consider before getting tested.
Morgan Pratt of Taylorsville had a question. It was linked to her mother’s DNA.
“She was 28 to 29 is when she really started to show symptoms,” said Pratt, who is 25, just a few years younger than her mom was when she got sick. “I don’t know my mom without symptoms.”
Her mom passed away at 42 from Huntington’s disease, an inherited condition where the nerve cells in the brain break down over time.
“The disease really changed her as a human being. You wouldn’t have recognized her because of the horrible things she was doing.”
For Pratt, a producer for KSL NewsRadio, getting tested was a heavy bet. Like the flip of a coin, she had a 50-50 chance of having it.
Her dilemma is becoming more common. Some biotechnology companies now offer testing to see if you’re a carrier for genetic conditions like cystic fibrosis, meaning you could pass it on to offspring, and screenings for genetic predisposition’s to diseases like type 2 diabetes and breast cancer.
“That’s raising some concerns in the medical community because of the direct to consumer element,” said Jeff Botkin, M.D., who specializes in medical ethics at the University of Utah.
He says there are key questions to ask yourself before getting tested.
“How is this going to change your thinking about your health, and will you be in a position and motivated to use that information in a constructive way?” he said.
Botkin believes more support services should be in place to help people interpret results in beneficial ways.
“You’re not necessarily plugged into a genetic counseling service or professionals who have experience with these sorts of tests to help you interpret what that means,” he said.
Pratt decided she wanted to know.
“I was eager to get tested because there are so many cool studies out there, and I wanted to be a part of one of those studies,” she said.
She didn’t use a direct-to-consumer test. She went to the UC San Diego School of Medicine.
“It’s just a little cheek swab,” she said.
The results were not good news.
“I found out that I actually have Huntington’s disease,” Pratt said.
Emotionally, knowing is hard.
“I don’t know who I’m going to be in the next six months,” she said. “I don’t know who I’m going to be in the next 12 months.”
But still, Pratt has no regrets.
“Knowing is light,” she said. “Then you have the opportunity to make the best decisions for you.”
She’s enrolled in a study through a pharmaceutical company. And that’s the key, expert say. Take time to think about the consequences before getting tested.
Botkin said, “Make sure you’re educated about the pros and cons, what you will be able to do with that information, and who will be there with you to interpret the information and be there to follow up with care services.”
That way, you can plan for the future.