This post is not a super fact post but it contains some other important information. 23AndMe, the large personal genomics and biotechnology company just went into bankruptcy. This has implications for its 15 million customers including me and my wife. In fact, it is advised that you delete your data from their website, and I will tell you how to do that.
About 23AndMe
23AndMe, founded in 2006 provides a direct-to-consumer genetic testing service in which customers provide a saliva sample that is analyzed to generate reports relating to the customer’s ancestry, genetic predispositions, inherited health conditions and other health related topics. Who doesn’t want to know something about their ancestry going back possibly thousands of years? Who doesn’t want to know about genetic timebombs in their DNA? I took the test, and my wife took the test, our daughter took the test, other family members took the test, and it was fun and very interesting, and a good conversation starter. For example, I found out that I am practically a Neanderthal, well maybe not exactly.
What we did not think about is that 23AndMe represented a significant privacy risk. This is data that can be misused in various ways. You can be discriminated against based on this data, you can be denied employment, insurance companies can use it to deny you health insurance, you can be subject to surreptitious testing without your consent. Not to mention familial complications, such as infidelity, and people finding out who their real parents are, and relatives were. In the wrong hands this data is dangerous.
In October 2023 hackers stole 7 million people’s data. Stolen information included people’s names, addresses and genetic data and was sold online. This made the economic difficulties the company was in even worse. Yesterday the company filed for Chapter 11 bankruptcy and their founder and CEO resigned. Now people are rightfully worried about their data.
Ancestry from 23AndMe
However, the information we got from our genetic tests was interesting and fun. I found out that my ancestry was 99.8% Northwestern European, 85.3% Scandinavian/Sweden/Norway, 14.4% Finnish, 0.1% other Northwestern European, and 0.2% Siberian. Not surprising since my family have lived in northern Sweden and northern Finland since at least 1628 according to the ancestry records. Other people in my family were a lot more mixed than that. I can add that I also thought it was fun to on occasion find second cousins or third cousins whose existence I was unaware of.
I also found out that I had strong Neanderthal ancestry. The report says I have more Neanderthal variants than 99% of customers. On the 23AndMe website there was a forum, or club for people with strong Neanderthal ancestry, so I joined. However, some people were taking it a bit too seriously and after I while I did feel comfortable in the Neanderthal club, so I left.
Fun Facts from 23AndMe
I was happy to find that I did not seem to have any hereditary predisposition for any illnesses among the ones they listed. Well, I have the typical predisposition for type II diabetes. I was happy to see that I am not predisposed to get Alzheimer’s, which I was worried about, since I have a couple of relatives with that condition.
The most fun and perhaps least important aspect of the genetic testing was the non-health related predispositions. For example, regarding “ice cream flavor preference” my genes says that I am “more likely to prefer vanilla over chocolate ice cream”. My wife got the opposite, and this is correct. I love vanilla, she loves chocolate. I am less likely than average to be afraid of heights and less likely to be motion sick.
Our eye colors, finger and toe lengths, propensity for dandruff, cheek dimples, hair texture and thickness, earwax type, freckles, bunions, the DNA analysis got it all right. By the way I am good at smelling asparagus, just like my DNA test says. The one thing that my DNA test got wrong was that the most likely time for me to wake up in the morning is 6:53AM. The DNA test got my wife’s wake up time correct, but I am not waking up at 6:53AM.
Deleting your data from 23AndMe
OK this is a lot of fun and maybe useful, but the big question is do we want this information in the wrong hands. I’ve mentioned a few ways in which this data can be misused but there may be many more ways this data can be misused that I have not thought about, that no one has yet thought about. Therefore, I deleted all our data from 23AndMe today. If you are a member of 23AndMe I suggest you do the same. Below I am giving you the instructions for how to delete your data from 23AndMe.
- Log into your 23andMe account. You may need to reset your password.
- Go to your profile and locate the little menu up on the far top right. Select Settings.
- Scroll to the “23andMe Data” section at the bottom of the page and click View (button). If you want to download your data, select what you want to download. I downloaded the “reports summary”, which is a pdf file. I also downloaded ancestry composition raw data, which is a large CSV file compressed into a zip file. Finally, I downloaded family tree data, which is in json format.
- Scroll to the “Delete Data” section and click Permanently Delete Data. This is a Red button at the bottom.
- Confirm your request: You’ll receive an email from 23andM. Click the link/button in the email to confirm.
Important Note : I am back from my ski vacation, and I once again respond to comments posting and visiting other people’s blogs.
To see the Super Facts click here
Newstrade
Discovering one’s ancestry is fascinating. I believe that, on a subconscious level, most people want to know how deep their roots go. And where.
Glad to hear you deleted your account. Personal data is so important and yet such a volatile thing once it makes its way online.
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Yes you are right. I read about an african american woman who had no idea where in africa she originated. She was happy to find out it was Nigeria but then she got worried about privacy issues. The service offers a lot of interesting information about yourself but it is a goldmine for those who want to misuse it.
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I have been intrigued by these DNA services, but never did get around to engaging with one. Now I’m glad I didn’t. (Although it would be interesting to get all that information.)
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Perhaps you could get it and then delete it from your account. I’ve got it but it is only my own computer now after I deleted it online. It is having it online, which is dangerous.
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thank you so much! I hesitated for a long time going onto 23 & me because I often worry about such privacy risks – whaddya know, the rare time I do it… lol…
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Yes the privacy risks just got much larger with the bankruptcy, and imagine Elon Musk with this data. Luckily I got my data downloaded to my own computer but gone from online. It is having it online, which is dangerous.
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Okay if I reblog this to my site?
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Yes of course. da-AL you can certainly reblog anything I post in any of my two blogs any time. That is a great honor.
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I had no idea they went bankrupt. I’ve often thought about not having my data out there, so thanks for showing how you can delete it, Thomas! Very useful info. 😊
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Thank you so much Laura. It was fun to find out this data but there’s a risk, and I think it went up significantly with their bankruptcy.
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Very interesting information. We’ve never done the testing with any company, and don’t want to. It does sound kind of fun, but still, I’m too much a skeptic. Some business that wants to make money, can tell people anything they want to, true or not. Who’s to know? I think most of it is just made up stuff to get people’s money. 🙂
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You are right Barbara. This stuff is fun to know but there’s a risk with having this data online. However, I don’t think they are making up the information. Everything may not be entirely accurate, but you can tell a lot from the DNA, and they could not have known all the stuff that was accurate in our case. That’s why the data is a goldmine to insurance companies, employers, etc.
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This makes me happy I have no real interest in my genealogy!
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My geneology is pretty simple. Northern Sweden and northern Finland for many hundreds of years. My wife’s is more complex. Some people think it’s fun, some care less, but in the end it is not safe to have the information online.
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That sounds like a lot of fun. They make comments on more stuff than I thought of. Predisposition to disease would be good to know, especially because, in my case, there’s a lot of family (on both sides) I never met. Long story. But I am too paranoid to go to any of the genetic testing services. Who has access to the information? Who owns it? At least with the bankruptcy, you have the option of deleting your online information.
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I thought it was fun. I thought it was fun that they could say so much with such high accuracy, even silly stuff like the flavor of icecream that you like. However, being a bit paranoid about it may not be so bad. Having too much information about you online is a risk and this is a lot of information you may want in the wrong hands, or in the hands of insurance companies, empoyers, etc.
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Very helpful, thanks thomas! __ __Jessica R. SardasPronouns: she/her/hers:: 214-629-2364:: jessicasardas@gmail.com
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Thank you so much Jessica
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I’ve always been leary of a company/computer having too much information on me and now I think those fears are justified. It is interesting though, the information you got like ability to smell asparagus or the exact time you wake up. Fun to do, but I don’t think I will. 😊 Maggie
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Yes I agree. I joined because it was fun to find out all this information but then I became more aware of the danger of having this information online. My information has been hacked several times with different online services. When I was working for Ericsson we had some very sensitive information we wanted to protect. What we did was keep this information on computers that had no internet access. We are so used to putting things online that we forget the security risks. When this company went bankrupt I started seeing calls for deleting your info and I took action.
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EL LIBERTADOR, I’M THE STORM AND THE FLAME,
BREAKING THE CHAINS, REWRITING THE GAME!
FROM THE ANDES TO THE PLAINS, I RAISED UP A NATION,
KICKED OUT THE CROWN, LEFT ‘EM LOST IN FRUSTRATION!
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I hope deleting works. I wonder how that is impacted by the value of the company at sale/bk. I never did the DNA thing because of the fear of privacy. Loved the cameo of my favorite ancestors, Neanderthals.
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That is probably prudent. This is very personal information and I hope deleting it, really means it is gone. When I was working for Ericsson (I was creating electronics for a fighter jet) we had some very sensitive information we wanted to protect. What we did was keep this information on computers that had no internet access. Neanderthals are fascdinating, and fun to read about.
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I have been hearing a lot about 23andMe and the importance of deleting the data. But I don’t know if that makes a difference because some companies do like to store data even in unethical ways. Either way, it’s so interesting you learnt so much from your results. The 0.2% Serbian is fascinating since it’s the only one that’s not Northern European.
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Yes you are right Pooja. If they are unethical they could keep the information even after I supposedly deleted it from online. There’s nothing I can do about that, but I did my part. I hope they are ethical. DNA is very detailed and personal information that can be used against you in various ways. I should say it was 0.2% Siberian not Serbian. My wife’s DNA was a lot more varied.
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I have always thought DNA harvest gathering was something to avoid … So I am Sorry to hear this Thomas.
I am however pleased to learn you enjoyed your skiing holiday, Welcome back, 🙂
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Yes it is very detailed and personal information that can be used against you by insurance companies, employers, and others. It is risky to have it online. However, I deleted it now. I hope it is truly gone from online. About the ski trip, thank you so much Sue. We had a wonderful time skiing and a wonderful time together.
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