NIH Researcher: DNA Health Tests Can Cure Your Curiosity, But Have Limitations

"They sometimes generate answers to questions you might not want”

If you were at risk of developing a life-threatening disease or condition, would you want to know? DNA testing kits can put that important medical information right at your fingertips, but there are potentially serious drawbacks.

“It's critically important to understand what those home DNA tests are and what they're not,” said Dr. Leslie Biesecker, a clinical and molecular geneticist at the National Institutes of Health in Bethesda, Maryland.

Genetic test kits offer an easy and affordable way to study your DNA from the comfort of your own home but consider this:

“They are not genetic tests that are designed to answer a medical question about a condition that a person may have or that other members of their family may have,” Biesecker said.

Biesecker is one of the leading researchers in the world when it comes to inherited disorders, but says he hasn't had his own DNA tested.

“I have not had mine tested because I practice what I preach,” he said.

"Just like any other medical test. You don’t go in to a doctor and have any blood test done just for curiosity. You do it when you need it and if you need it, then it’s worth it.”

DNA testing company 23andMe has the first and only FDA approved at-home test that screens for certain cancers and Alzheimer’s and Parkinson’s diseases without a prescription. It can also test to see if you're a carrier for inherited conditions like cystic fibrosis or sickle cell anemia.

Knowledge may be power, but Biesecker warns there are limitations.

“They are not testing for the overwhelming majority of gene changes or mutations, or whatever you want to call them, that could be causing that,” he said. “For example, for the hereditary breast and ovarian cancer susceptibility gene, there’s over a thousand known gene changes that can cause those traits. The company tests for three.”

There's also worry that the results could reveal your risk of developing a disease that has no cure.

“They’re pretty expensive and they sometimes generate answers to questions you might not want,” Biesecker said.

A troubling diagnosis comes without any guidance from a doctor or genetic counselor to help interpret what they really mean.

If you decide to take the test, read the fine print because companies can sell your DNA for profit.

“They are in many cases also doing research on your DNA that you have given them for your $200 ancestry and genetic screening. And so, you need to be aware that they may keep that and they may want to do research on that and make discoveries on that,” Biesecker said.

Bieseker says people who have family history or health concerns should get a doctor to do their genetic testing.

All this week News4 is looking into home DNA test kits. Watch News4 at 5 and 6 p.m. on Thursday for a closer look at the privacy concerns surrounding your DNA and how life insurance or long-term care companies could use your genetic information against you.

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