Opting in

One of the reasons that I was so eager to participate in the 23andMe experience should be pretty obvious to you. Living with and caring for a person with Alzheimer’s disease is brutally difficult. You see things and clean up messes that you could never have anticipated. You become close to a person on their most base level – and often that closeness is not something that you celebrate. And while there is not yet a clear “Alzheimer’s gene” to test for I was driven by a desire to know if there were any other long-term scary health variables that I should brace myself for. I didn’t want a surprise. And while I know having an increased genetic risk does not spell out a diagnosis- it does make you alert and aware. And after the sneak attack of Grandmother’s Alzheimer’s awareness was what I wanted/needed.

I think some of the trepidation that people might have about genetic analysis is this notion that the results are relayed to you in a wham bam sort of way. That couldn’t be farther from the reality with 23andMe. The results are displayed in a very, well, almost mellow tone. And nowhere does it ever say something like, “you have cancer”. Instead the reports deal in percentages and averages. You have either an increased risk or a decreased risk- and all of that is relative to what is considered a “normal” risk.

These percentages are all one click away for disease risks for Celiac or carrier status on things like Cystic Fibrosis. But there are some reports that 23andMe understands can be more complicated. There is a vast difference in learning about eye color predispositions than say the BRCA cancer mutations. This is where “opting in” comes in to play.

Opting in is beyond a one-click moment. It is a, “are you sure you want to know?” and then a “are you really sure?” and then a  “ok before you view your data you need to know…” If you have raw emotions about some of the opted in data I wouldn’t click through by yourself. In fact if I had real, on the verge, anxiety about what my genetic analysis would reveal I wouldn’t read any of the reports without a support system.

23andMe tries to brace you along the way and I feel that they do a pretty good job about it. There is TONS of information given and a very active and involved community exchanging comments on a wide variety of scientific and emotional levels.

When I saw that there was an opt in for information on the BRCA cancer mutations I barely even had a moment of pause before I was clicking on through. Tell me! Tell me! I clicked on to the report and was then taken to an informational page about breast and ovarian cancer. The page was extremely detailed in not only explaining what the gene mutations are, but also what it means- and doesn’t necessarily mean. There is also a very detailed sort of checklist to read through to consider before continuing on to read your personal genetic data.

At the very bottom of this checklist page is another place to click to progress forward with the revealing of the information. I read through all of the things on the list and felt confident that I could handle the knowing of such potentially scary information. And then there it was, my results, and it was ok. No copies of the three early onset breast and ovarian cancer mutations were identifiable. Huge, massive, fantastic moment of exhale there.

But it did make me wonder- what if I was a carrier or at an increased risk? Would I then be obligated to share this information with my son? Maybe “obligated” isn’t the right word- but I would certainly share any and all information with WW once he is of age to comprehend genetics and health. If anything this information is just another thing to be on the look out for. While I don’t seem to be a carrier of the BRCA mutations, I am a carrier for something called hemochromatosis. And already that awareness has come into play in connecting some of the dots in the liver health of my family (both Mother & GM have unusual liver issues which are believed to be genetic).

Knowing that I need to be aware of my liver health is a sort of power. It has empowered our family and it will continue to be information passed on to my son.

And while we are still waiting for the science to catch up in terms of pinpointing an Alzheimer’s gene everyone in my family is hyper aware about being prepared for the disease. We tease each other about eating brain food and doing crossword puzzles to keep sharp. We may not have the research reports yet, but our awareness to be at the ready is in full force.

New research reports are filed all the time within your 23andMe health and traits section so you know that as soon as the research is ready it will be available for viewing.
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2 thoughts on “Opting in

  1. Very interesting. We carry hemocromotosis in my family– and most (all) of my male uncles has it. My mother recently got tested so that we would know if my sis and I should. I know that power is knowledge. But sometimes it is scary.

    • ooh! INteresting that you have the hemocromostosis stuff in your
      family as well. I have learned SO much about it since being genotyped.

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