Mail order genetic tests for health risks. How much do you want to … – KOMO News

Posted: July 31, 2017 at 6:42 am

Paula Ward scrolls through the website for 23andMe which was recently approved for direct-to-consumer genetic tests for health risks. KOMO photo

One of the top sellers on Amazon Prime Day this year has nothing to do with electronics. It's a $200 test for personal ancestry and genetic health risks.

The health risk part of that test has a lot of people asking : How much do you really want to know?

As a two year breast cancer survivor, Paula Ward knows she has some degree of cancer risk. But she wonders what other possible health risks might lurk in her DNA.

"My grandmother did have Parkinson's," Ward said. "Alzheimer's is also a concern because I did have a great aunt that had that, on my mother's side."

Ward likes the idea of going online to order a genetic test to learn more.

23andMe is the first genetic testing lab to get FDA approval for marketing health risk tests directly to consumers. Customers receive a kit in the mail that includes a sterile tube to collect and send back a sample of your saliva.

The results do not tell whether or not you'll get a particular disease, only if you're genetically predisposed.

23andMe is approved to test for 10 diseases but right now only tests for four: Late-onset Alzheimer's Disease, Parkinson's Disease, Hereditary Thrombophilia, linked to an increase tendedancy for blood clots, and Alpha 1 Antitrypsin Deficiency, an inherited condition linked to lung and liver disease.

"But it's really important to know that it's not diagnosing disease or health condition," explained 23andMe Medical Associate Stacey Detweiler.

On it's website, 23andMe emphasizes that its health risks reports are not for diagnosis. They only tell whether you carry certain markers associated with risks for certain health conditions.

The company says other genetic factors not covered by its tests can also pay a role in your overall health risks. So can different factors specific to your own environment and lifestyle.

"It's not giving that diagnosis," Detwiler said. "But it's kind of like another tool that you can use working with your physician, for working towards just overall general good health."

But Geneticist Dr. Gail Jarvik,head of the the Medical Genetics division at the University of Washington, urges caution.

"We have had a number of people contact us after 23andme started testing again for risk of disease," Jarvik said. "And one particular patient has a 40% risk of Alzheimers disease and is extremely concerned and would like to know what can be done. And there's very little you can do to modify your risk of Alzheimers disease using that information, that the rest of us shouldn't be doing anyway. Better diet, and better exercise, most of us would benefit from."

Critcs fear some people are not emotionally prepared for the potential results of the test, especially when many genetic diseases have no remedy.

"We don't have really good, specific ways of modifying risks of Alzheimers and Parkinsons, which are part of this test," Jarvik said. "And people should think about that before they order the test, do I want to know ths information? Will it improve my quality of life? Or just make me very worried?"

"We do highlight that this is information that once you learn it, you can't unlearn it,so to really be confident that this is information that you do want to know," Detweiler said.

"It's just a tool," said Leanne Spaulding, who plans to discuss taking the test with her family. Spaulding knows her family has a history of dementia and diabetes.

"If there's anything else that runs in my family that I don't know about, I'd just as soon know, and be able to do something about it, and be able to make plans around it," Spaulding said

Paula Ward agrees that having her potential health risk information might be an added tool for long-term planning, lifestyle changes or discussing your health with your family. Ward's advice: Before you decide on a genetic health test, do your homework, and be very honest with yourself.

"You know how you are," Ward said. "If you stress over little things, then maybe that's something you don't need to know."

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