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23 and Who? The results

This post is the 2nd in a 2-part series on our experiences with 23andMe.

Wellpepper: What made you want to try 23andMe?

Anne Weiler: I wanted to see what the customer experience was like. It seemed so simple. $99 and they promise to tell you about your ancestry and DNA.

Jacquie Scarlett: I was really interested in getting back the results and seeing if the information I received from 23andMe was consistent with what I already knew about myself and my family history.

Wellpepper: What did you think you would learn?

Anne: I was curious about my ancestry. I had a theory that somewhere in my family someone was Jewish. They weren’t.

Jacquie: I figured that I would get confirmation that I was mostly European and that arthritis ran deep in my history and would be a high risk for me.

Wellpepper: Were you surprised by the results?

Anne: Originally, I was surprised at being 99.9% European. People are always asking where I’m from and they aren’t satisfied with “Canada” as an answer. When I was travelling in Nepal people thought I was half Nepalese. However, since I originally received results, they have been refined, and I’m now only 99.5.% European. I am not sure if that explains anything though.Anne Weiler Ancestry from 23andMe

Jacquie: I wasn’t overly surprised by the results, but found some items very interesting. I knew that I would be mostly European, and I was – 99.7% (mostly British and Irish) – but it was fun to find out that I was .1% Jewish and .1% Native American.  It was also pretty cool to see 479 DNA relatives pop up in my results from all over North America and the UK.

Wellpepper: What was the most surprising result?

Anne: Most surprising were results that contradict my actual experience. For example, 23andMe says I’m at reduced risk for Psoriasis, a hereditary disease that runs in my family and that I do in fact have. This does make me question other results.

Jacquie: There were a few illnesses in the Elevated Risk section that took me back for a moment, but then when I dove into the results I realized that I was merely a few % points above the average for all people and I relaxed. It is a bit surprising to see those illnesses listed in front of you.

Wellpepper: What was the least surprising?

Anne: That I’m at risk for glaucoma. It’s hereditary and I’m familiar with my family history.

Jacquie: High risk for arthritis – very prevalent in my family history and I already have the illness.

Wellpepper: What is your understanding of the accuracy of this test?

Anne: I don’t know the statistical accuracy, but I know that 23andMe was trying to get to 1M DNA records sampled so that they could claim accuracy. I also saw the NY Times article showing the discrepancies between tests. Based on some of my results that are wrong it’s hard to know. The brain is funny though: I definitely want to believe that the results showing low risk for Parkinson’s or MS are correct even though I have other results that are incorrect based on my personal experience.

Jacquie:  I do not know. I have the understanding that the more DNA they receive from the population, the more accurate the results will be and the more information they will be able to find out. I took this as an opportunity to learn more about DNA and the possibilities of what you could learn versus that this is the absolute truth.

Wellpepper: What was it like to receive your results?

Anne: Anne Weiler Norovirus ResistanceIt was addictive. We all want to know about ourselves, and here it was, in great detail. I really loved the random things I found out, like I’m resistant to Norovirus (stomach flu) or that I am likely to sneeze in bright sunlight. I intuitively sensed those things, but had no idea they were genetic.

Jacquie: It was pretty fun and interesting. I love learning more about myself and family history. Even though there was a lot of information, I found myself wanting more and wanting to dive deeper. Every time there was an unknown listed – I wanted the answer – this is what keeps me coming back to the site.

Wellpepper: Since you have received your results how have you engaged with 23andMe?

Anne: They are very good at pulling you back in, either through relatives who want to connect or by releasing new test results. That’s the really interesting (and scary) part. Once your DNA is analyzed it remains on file and they run new tests or more accurate versions of previous tests on it. I didn’t realize that it was going to be such a sticky experience.Anne Weiler DNA Relatives

Jacquie: I have checked in from time to time to see if any of my results have been updated. I also really enjoy doing the surveys – I am very interested in the research that 23andMe is doing and want to help in any way I can.

Wellpepper: Have you shared your information with anyone? Who and how?

Anne: I’ve connected with two 2nd or 3rd cousins on the 23andMe website. I’m interested in finding my maternal grandmother’s family. We don’t know as much about them.

Jacquie: I have shared my results with close friends and family, mostly with family to entice them to do the test as well.

Wellpepper: Would you share it with your doctor?

Anne: If I thought it was relevant to symptoms I was experiencing yes, but otherwise not unless my doctor asked. Doctors are being overloaded with data these days.

Jacquie: I would share the results with them if they would find it helpful.

Wellpepper: Do you think 23andMe will continue to engage you?

Anne: I don’t seem myself using it all the time, but as I mentioned before they do a good job of bringing you back in, and maybe I’ll become more interested in genealogy as I get older.

Jacquie: I will check in here and there. I imagine that if I have a health situation, it will be helpful to be able to pull these results when needed.Anne Weiler Asparagus 23andMe

Wellpepper: Do you think people should have access to this type of personal health information? Is it dangerous?

Anne: They should definitely have access. I thought 23andMe did a good job of presenting potentially disturbing results with the appropriate cautions. For results for chronic and debilitating diseases they make everyone read information about the disease before they tell you if you have the marker for it. I think it could be dangerous if someone started to make changes before talking to their doctor, except for some basic things like avoiding tobacco or caffeine, which are good for you regardless of the markers you have.

Jacquie: Absolutely! I think it’s very beneficial for people to have the most information possible so that they know more about themselves and feel empowered to take care of themselves and their health.

Wellpepper: Based on receiving your results, will you make any personal changes?

Anne:  I will be more helpful to people with stomach flu since I know I can’t catch it, and I’ll be even more strict on my caffeine in the morning only policy.

Jacquie: The results weren’t surprising enough to cause any personal changes.

 

Posted in: Behavior Change, Health Regulations, Healthcare Disruption, Healthcare Technology

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