I Did Something to my 23andMe Account That I May Regret

You know me, I’m a bit of a DNA nut. I’ve tested with every DNA company that you can test with.

It all started with Family Tree DNA (they were the only company to allow testing in Canada at the time I tested) next it was an AncestryDNA kit which I purchased at RootsTech and spit in before heading home to Canada (that was one year before AncestryDNA could ship to Canada). I completed a Living DNA  kit in 2016.  I’ve transferred my results to MyHeritage and to Gedmatch so the only test I hadn’t done by 2016 was 23andMe.

One of the reasons I hadn’t done a 23andMe  kit was because they provide health information. You might think it’s odd that I didn’t want to learn about my health but I’ll tell you why. One of the things 23andMe tests for is late-onset Alzheimer’s. If you’ve been following my blog, then you know that my mom died from complication from Alzheimer’s.

My mom’s battle with Alzheimer’s started many years before she was diagnosed with Dementia/Alzheimer’s in 2011.

I traveled with my parents yearly to Las Vegas and on other trips, so I’d seen the steady decline in my mom. At the time I didn’t realize what was happening I just started to notice that when she was telling me things she didn’t get things quite right. That when I’d talk about genealogy and family relations she didn’t seem to care as much anymore. And she stopped crocheting her dish clothes.

She used to crochet every night while watching TV. At one point I asked her why she wasn’t crocheting anymore and she just told me that “she’d lost interest”. I didn’t realize she probably didn’t recall “how” to do it anymore. One of the most heartbreaking things I remember, once she was diagnosed in 2011, was when she went with me to the Edmonton Woman’s Show and she told me that she couldn’t remember how to write her name anymore. At that point her decline was swift. She went from this woman who loved and did for her family her whole life to someone so troubled and pacing the hallways of the care facility she was in, then forgetting the people who loved her, forgetting how to talk and ultimately forgetting how to breath.

So when I purchased my DNA kit in 2016, I again bought it at RootsTech , because at that time, only in the US did 23andMe offered two types of kits. The Ancestry and the Ancestry and Health. They now offer both types in Canada but that was back when I bought it. So I purchased the 23andMe Ancestry kit and I was happy with learning what they saw as my ethnicity and who my cousins were. When I first completed the test, especially at the beginning, they would send me offers to upgrade my kit to add the health for $125. I was happy to ignore those emails.

But then the other day I received an email from 23andMe saying that they were making me a special offer. For two days only I could upgrade and add the health portion for not $125 US but for $49. Yesterday was the last day of the offer and as you can imagine from the title of this blog, you know what I did. Why did I do it? Well, I swear I can’t pass up a deal but  I’ve also worked with a few clients that have the full 23andMe and I know that you have to actually select the health portion to go see the reports. But the real reason is that I’ve been thinking more recently that I may want to know.

Because you see I’ve been going through this tennis match in my head for the past few months. On one side I think if I checked I might be surprised and I’m not going to get Alzheimer’s.  Then I would have been worrying for all these years for nothing.  Worrying about every time you forget why you went to the pantry and every time you couldn’t remember someone’s name.  Heck, I didn’t always remember people’s names when I was 20. Or on the other hand, if I found out I was going to get Alzheimer’s then I could go to my Dr. and see what I could do to delay the onset of it if it was possible. On the downside, I don’t know how I’d feel emotionally about that information. Would I just be happier in my ignorance?

So that’s where I sit today. I have an email in my inbox that says I can now see my results. Will I look at it today? I doubt it. Will I look at it next week? Maybe and maybe not. But when and if  I’m ever ready the results will be there.

Why am I tell you this? Well, it’s because if you haven’t tested at 23andMe, either because you don’t want the health information or because you didn’t want the expense, then you could consider taking just the Ancestry portion of the 23andMe kit. Then when your ready or maybe it’s the day you get an offer you can’t refuse,  then you can decide. In the meantime, you’ll have all those cousins, to look at, that only tested at 23andMe and wanted to share their DNA with you.  Because if you’re like me you’re “always looking for new cousins”.

 

Note: This blog contains affiliate marketing links where you will be taken to a vendor’s site and you can purchase things. You won’t pay anything additional for your purchase and I receive a small amount of money. I use this money to support The DNA Angel Project ­and I make monthly donations to the Alzheimer’s Society in Canada. Or if you’d like info about the Alzheimer’s Society in the USA click HERE

27 Comments

  • Harry J Benson says:

    I took the 23andMe test and showed two e4 variants to the APOE gene (only 5% of the population have this) which puts one at higher risk at late onset Alzheimer’s. I volunteered to be in a double blind memory study at Univ of Penn. Not taking the health does not change what is there, but taking it you might be able to researchers help future generations, who will hopefully appreciate our genealogy research.

  • Connie says:

    I first recommend that you learn as much about Alzheimer’s and how it is inherited as you can. The National Institute on Aging (NIA) has a good fact sheet on this at https://www.nia.nih.gov/health/alzheimers-disease-genetics-fact-sheet. Once you look at your results you should talk to your doctor about what it means; she can help you understand what your risk is.
    My father died of Alzheimer’s, as probably did his father and grandfather (both were put in the County Home due to senility – this was before anyone was calling it Alzheimer’s). I have decided that I want to know so that I can make decisions while I can that will make it easier for my family if I am ever diagnosed with Alzheimer’s. There is no cure for Alzheimer’s yet, but just because you have risk factors does not mean you will get it. I want to be proactive. I have purchased long-term care insurance and my estate papers are in order. My family knows what I want regarding care. Like someone else stated and is mentioned in the NIA fact sheet, researchers are looking for volunteers who have not been diagnosed with Alzheimer’s yet so they can determine how genetic risk and protective factors may interact with other genes and lifestyle or environmental factors to affect Alzheimer’s risk in any one person. You know how devastating Alzheimer’s can be to a family. Face your fears, if not for yourself, but for your family. Maybe someday there will be a cure for this horrible disease.

    • Connie, Thank you for the information. You absolutely correct I do need to gain a better understanding of what the results might mean to me should they show that I have the gene. You are also right about facing your fears and getting your family affairs in order. That would be the right approach and good advice for whatever life might bring you. Thank you for your comments.

  • Xenia Stanford says:

    Don’t we all have markers for certain heritary diseases? Does this mean we will get it? I know several cases where predictability was askew. One woman was diagnosed with MS in her 60s but probably had it longer. No one else in her family before her or her generation or the ones below have shown any signs of it. In another case, dementia developed in second cousins of the same generation but the older generation and other cousins as well as the younger generations did not develop it at all. Some of his children are the age where he and his second cousin were when they developed it. I know families where mental illness has hit more than one member of the same family, e.g. a mother, her son and the son’s only two children and in another it was the mother, the daughter who was one of three children and the daughter’s one nephew out of numerous ones developed mental illness. None of the other descendants of this mother have shown any signs of the disease. Does it mean none of the others would have markers for it? Does it mean because you have a marker for it, you will develop it? Angelina Jolie and other women have had mastectomies because they had markers for the same type of cancer as their mother (Angelina’s case) or another female member of the family. That is drastic but in that case, it is absolutely a way to prevent the disease. In the other cases maybe can do something about it but unless one chops off their head, it is pretty useless to know you have a marker for mental illness. I definitely am curious but so far my only family inheritances in terms of ailments or diseases are allergies and asthma. Nothing can be done to prevent but only treat once the threat is known.

    • Xenia, Doing this has made me realize that I need to find out more about the 23andMe results. I’m not saying I’ll look at my results but I need to understand “before I do” if the results are defacto or are they just possibilities. Thanks for your response.

      • ggribble says:

        if you know you have a marker for alzheimer’s or huntington’s, there may be little to do about the possibility of acquiring the illness, but you may decide to change the trajectory of your life – travel more, take up a hobby you had previously decided to postpone to a later age, etc..

  • Pete Hraber says:

    Thank you for sharing your approach/avoidance dilemma. I’m pretty sure we are not the only ones who have given this some thought. In my humble opinion, I will continue to work toward a longer and better life, as I have in the recent past. I now wish for a little more information so I can make better decisions and avoid mistakes. This was not easy lesso for me. Even if I learn about obstacles, setbacks, opportunities, and dangers I still have to make decisions and there is no guarantee they are best decisions. But I have an edge, and a better chance of deciding well if I know more about what can, may, or will happen.

  • Sherrie Fields says:

    Hi, I had results that gave me so much interesting information and 23&me keep sending me more information. I wanted to know what I might face healthwise so I could take precautions and make plans, just in case. I also got information that was fun to know…like the fact that I probably had a fear of heights. I had to laugh, I sure do. Have worked on that problem for years. It’s must better now, but was a real problem when I was younger. My results were the opposite of Susan Smith’s. Mine were right on. I took my first reports with me when I went to see the Doctor about some problems I had and had a good laugh when he grabbed them out of my hand to read them. Turns out he had just taken his test and was excited to see what the results looked like and talk about how some of the results matched some of how I look and how I am. I hope you wind up enjoying all you learn. No rush for you to actually read those results until you feel ready. They will wait for you. Best Wishes…

  • Vanessa says:

    I think it’s a good thing to do and I totally get why you might not want to look at the results. However, as your family, I’d like to know if I might ‘lose you’ before you were gone from this earth. Because I would try to spend every minute I could with you! 😘

  • G Gribble says:

    you could do promethease, i much more complete health dna report, for about $10. (i haven’t looked at their fee recently. but you will get a limited number of reports from 23andme, too. i have done both.

  • Candi Johnson says:

    Just because you carry the gene, does not mean that you will get Alzheimer’s and vice versa. Don’t be afraid to look at the results. Plus, there are healthy choices you can make to delay or stop Alzheimer’s

  • Susan Smith says:

    If it’s any consolation, 100% of the predictions 23andMe made relative to my potential inherited traits, are wrong.

    1. I am not thin
    2. I love Milk and drink it often – without repercussions
    3. I am not a deep sleeper
    4. I have a cleft chin
    5. I have thick hair
    6. I have dark hair
    and a whole host of other attributes that were incorrect.

    That’s not to say that specific carrier status may be incorrect, but I wouldn’t take their predictions as gospel or even a 74% certainty.

    • Thank you Susan.. I need to check the level of accuracy the test has in the case of Alzheimer’s. I just thought because Alzheimer’s wasn’t really preventable that if it showed on your results then it was pretty much a given.
      I’m hoping that some of the info they provided was accurate for you. 🙂

  • Virginia says:

    i believe information is power. I want to know everything I can about my health and things I’m at risk for. Had one aunt with Alzheimer’s. Even if the test says Alzheimers’ (and I think you only get a risk estimate, not a Yes/No answer), and even though they say there’s “no cure”, I can do things to prepare my family and myself for the possibility, like look at dementia care facilities now, while I’m lucid, and tell my family which I liked, just in case.

  • Lori Smith says:

    I thought about upgrading also, but chose not to at this time since my dad has dementia. I guess I am like you- afraid to read what the results might say, though the company says it does NOT mean you will get any disease just because you have markers. Maybe next time…..
    One thing I would like to share with you is coconut oil for Alzheimer’s. It is not a cure, but it helps delay and can bring hope to many; please look into it for yourself and those you know.
    I always enjoy your blog!

  • Diane says:

    It is a bit scary to see the health portion but I have such high hopes that the health system will continue to find cures for the very things our parents and grandparents had no cure for. My son has MS. I compare this to the his condition only because there was no treatment for his type MS 10 years ago when he was diagnosed. He participated in a study and the drug he was on, was approved for treating his type MS. Just think, if you know, you might want to participate in a drug study as well. There are never any guarantees, but isn’t life a bit of a crap shoot anyway?? I wish you the very best and hope that when you do look at it, it will be positive for you. Hugs to you and thank you for sharing

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