True Identity: Discovering your roots - and risk

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What if you could discover your risk of Alzheimer’s or if your wife is a carrier for a devastating birth defect. Would you, like me, want to know? Or is ignorance bliss?

“What are you looking for, and how will you make sense of the results?” UT’s Dr. Shahna Arps wants to make sure potential customers are ready for what they might discover.

“Is it going to impact their decision on how to have a family? Or maybe there's we can really do about that information, and maybe they don't want to know that,” Kelly Morse from ProMedica’s Cancer Institute said.

Before having kids, I did want to know potential diseases I could pass on to my children. Turns out, I’m not alone. So, we went looking for answers about why these tests are more popular than ever.

“Identifying relatives, family members, people who share common ancestors with them,” Dr. Arps explained.

Ancestry’s DNA test has over four million customers and 23andme claims over two million.

“There is a lot of popular interest in the potential for these kinds of tests,” Dr. Arps said.

Even University of Toledo anthropologist Dr. Shahna Arps wanted her ancestry on paper.

“I actually received a kit for Christmas and I sent in my test tube, but the response I received was that I didn't have DNA in the test tube,” Dr. Arps said with a laugh.

Now for the test: it comes in an easy to use box, and importantly for me, there's no blood and no needles. After snapping a tube into place and finding a lot of spit, it's time to ship it off.

“We're all a lot alike when it comes to our DNA,” Dr. Arps explained.

“When it comes to actionable medical information, that's where we really want to be a little more clear on really what it is, and what it is not,” Morse said.

ProMedica senior genetic counselor Kelly Morse wanted to make sure I didn't dwell or rely too much on the carrier and medical results.

“Let's see, carrier status. This is like the part that scares me… It looks for all of these variants for life-changing diseases.”

And what if I had a risk of a late-life disease like Alzheimer’s?

“Whether or not you need to start doing anything differently now,” Morse said.

“Oh this is cool. So 0.6% African,” I learn of my short-term ancestry.

As expected, I’m almost all British, and Scandinavian. I also didn't carry any of the 42 diseases 23andme currently shows results for.

“Macular degeneration I am at an increased risk,” which isn’t surprising, as my grandmother has age-related MD.

Morse says there are some genetic diseases like Huntington’s that you're guaranteed to develop. If you found out, there's no cure. Would you want to know if there's nothing to be done?

I felt pretty lucky there. Because my grandmas has Sjogren's Syndrome which is an auto immune disease.

But Kelly says these mail in tests can't show every risk.

“This test only looks for a very select, or the most common problems that can be related to CF. It is not exhaustive,” Morse said, speaking of Cystic Fibrosis.

23andme still needs FDA approval before it can release cancer markers like BRCA 1 and BRCA 2. That’s often an indicator of future hereditary breast cancer.

So do you want to know or do you not want to know?

Morse says that genetic counseling often costs around 100 bucks using your insurance, if you meet certain criteria.

"It's not as expensive anymore to take these tests. So I think with that access, people are taking advantage of it," Dr. Arps said.

Ancestry’s basic test runs $79, while 23andme costs $199 for both the family tree and medical risk tests. Many of you are curious about your information being shared or future coverage for insurance.

AncestryDNA insists it does not give your info to your employer, insurer, or anyone else. You can read 23andme’s response to similar questions underneath this line.

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When does 23andme anticipate being able to release BRCA results to customers?

We are continuing to work with the FDA to provide additional information to our customers - we can't comment on any specific test, or results, as conversations with the FDA are ongoing.

Will existing customers be notified of carrier or existing statuses once they are approved by the FDA? Or is that testing not being done?

Anytime we are able to report new information we notify customers. For example, we recently notified customers on two new reports on age-related macular degeneration, a leading cause of vision loss in adults, and hereditary hemocrhomatosis, which can lead to iron overload. More on those reports here: https://blog.23andme.com/health-traits/23andme-adds-new-genetic-health-risk-reports/

How does 23andme guarantee that customers insurance companies won't get a copy of the medical results? And how do customers know their rates will never change based on their results?

We don't provide any information to insurance companies.