Home genetic tests cause for concern

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SALT LAKE CITY -- Home genetic tests may be all the rage, but Utah geneticists are raising a big red flag.

Knowledge is power, they say, but if it's not understandable it may not be worth the saliva you donated for the test.

Grant Wood, with the LDS Hospital Clinical Genetics Institute, enrolled in a $399 direct-to-consumer genetics service over the Internet and submitted a saliva sample from their kit.

Results showed several things including a higher than normal risk of developing Crohn's disease.

Wood knew how to interpret the data. So did Dr. Marc Williams, who heads up the Intermountain Clinic Genetics Institute. "Even though he was at a two to three times increased risk over the general population, the base line for developing Crohn's disease is less than 1 percent. So even with the two to three times risk, his likelihood of developing Crohn's disease over the course of his lifetime is still less than 1 percent."

Home genetic tests cause for concern

Interpretation is what worries Williams and Wood. In university labs, consumers seriously trying to identify a genetic risk in their family work hand in hand with doctors and researchers.

But when the data comes from home kits - what does risk really mean? Williams said, "If it's a very rare condition, even if you are at high risk for that, it may be very unlikely that you'll ever develop it."

On the other side, if DNA shows a low risk for say breast cancer, a consumer may stop having a mammogram, believing she doesn't have to worry anymore. That too is a mistake.

While these services may claim a plus 99 percent accuracy rate, be careful how you interpret that as well.

"If you're running a million snips, then you're talking about perhaps as many as a thousand points where there could be inaccuracies," explained Williams.

What about privacy? Williams says do your research. Make sure your DNA information from these services is not being shared with others.

It's good, Williams says, to have personal DNA testing more accessible and affordable, but consumers need to carefully define why they need the information and whether it's a wise use of an already stretched health care dollar.

E-mail: eyeates@ksl.com

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