Heads Up about the 23andMe Meltdown

As I’ve written before, 23andMe is going through a rather dramatic revision of their product following their FDA approval.  Their “upgrade” is rolling out in waves and began November 11th.  I had decided to wait until it was complete, and things had settled down before writing anything.  Transitions are notorious for being difficult and people are notorious for not liking or dealing with change very well.

However, given the significant problems being encountered by the community, and the uniformly negative feedback by those with the new account format, I feel compelled to give you a heads up about this.  If you’re interested in specifics, you can check out Kelly Wheaton’s December 2 posting on the ISOGG group on Facebook where this has been discussed at length.

Kelly Wheaton, a long-time genetic genealogist, community member and educator states:

“I am temporarily suspending my recommendation to use 23andme for genetic genealogy. This is based on several factors but the most important are the fact that it is functioning poorly and there has been a concerted effort by management to disregard the genealogist in the design and implementation of its new format. When it is functioning I will make a final determination. I have posted this on my website and will post in all places I frequent. Feel free to quote me if you’d like. This is a very sad day for me for its implications to the genetic genealogy community. It is not a step I take lightly.”

Kelly is certainly not alone and her commentary reflects the sentiments of many.  Truthfully, right now, the whys and wherefores and debate doesn’t matter.  All that matters is that it is what it is at this minute.  So, where are we right now and what do you need to do to protect and preserve your information if you have tested at 23andMe?

Current Status

If you tested on the version 4 (V4) chip, since December 2013, your account may have already been transitioned.  Good luck to you.

If you are on the V3 chip, testing prior to December 2013, your account probably has not been transitioned.  You still have time to preserve your information, but do it quickly…as in now.

Here’s the warning.

Download or Print Everything

Go into your account and print or download anything you think you might want or need – ever.

It’s unclear how much of your existing health and medical information will be available under the new system.  V3 users received information before the FDA’s shutdown of 23andMe’s medical information service in November of 2013 that has not been provided since, and is not provided under 23andMe’s new agreement with the FDA.  It’s unclear how much of their previous information V3 users will be able to retain, and in what format.

You will be losing some genealogy related functionality.  Feedback from V4 people already transitioned is extremely negative – and they never received the health information V3 people received – so they didn’t have that to lose.

Currently, on the new version, you cannot download your genealogy segment match information, although 23andMe has said this will be available later.  This may be a function of everyone not being on the same platform yet.  However, don’t take chances.

Here are four things you need to do.

Countries of Ancestry

I spoke in this article about downloading your Countries of Ancestry information if that is relevant to you.  It will be disappearing.

Health Information for V3

Currently, when you sign into your account, it appears that you cannot access your health information without answering those %#$@** questionnaires.  In other words, it seems that even though I have opted out of the research aspect of 23andMe (you can’t opt out entirely), I was being forced to answer information for their use before I could see my health information.

23andme meltdown

You can see here that when I click on “Surgical Complications” to see that information, I’m presented with this form that I must complete before I can view my results.  Let me tell you, I am NOT a happy camper about this method of arm-twisting.

23andme meltdown1

In essence 23andMe is telling me that in order to have access to my own information, I must opt back in.  That’s not going to happen.

I sent an inquiry to 23andMe about this, wanting to be sure I really did fully understand what they were doing.  Is this really as bad as it looks?

23andme meltdown2

In essence, it is and it isn’t.  It is in that you do have to answer those questions to see that information.

23andme meltdown3

I was not happy, so I reached out to 23andMe to clarify.

23andme meltdown4

Unfortunately, this focus on obtaining your medical information, one way or the other, seems to define the new 23andMe.

Based on their reply, to see the Surgical Complications information, one must complete the form, BUT there is also another avenue to access your health information which was not at all evident.

23andme meltdown5

Here’s the 23andMe “final answer” after a couple of clarifying exchanges back and forth.

Is the information in the health overview section truly the same as would have been presented to me on the Surgery Complications report?  I don’t know.  I can’t find out without opting in to their research again and answering that form…and I will never be a participant or victim of genetic extortion.

That aside, let’s make lemonade out of lemons and see how to access the complete health information as they instructed.  The Health Overview summary below is from an anonymous person.

23andme meltdown6

There’s the print link, at the upper right.  The printed report includes elevated risks.  If you click on the link below each group, “See all 122 risk reports,” above, you can see all the individual risk factors you were evaluated for in all 4 groups.  You must click on the link for each group located at the bottom of that group.  Even though there is no print button on the detailed report, on a PC, CTRL+P will print the entire page.

Download Your Genealogy Matches

To download all of your genealogy match information, fly over “My Results” at the top of your toolbar.

23andme meltdown7

Click on “Ancestry Tools,” then on “Family Inheritance: Advanced.”

Once there, you will see the comparison tool.

23andme meltdown8

At the bottom of the blue boxes, you’ll see “Download all of Roberta Estes’s shared segments as aggregated as of <date> or re-request the aggregation.”  Depending on when you last downloaded, you likely want to re-request the aggregation.

This provides you with all of your match information for those people who are sharing with you.

Other Changes

It’s unclear what else might be changing or how.  We do know that the half versus fully identical segment comparison information is gone now.  Suffice it to say, if there is anything, on any screen, that you want – find a way to preserve it.  Screen shots work too. On a PC that’s PrtScr and then paste to a document so you can save it either as document or the screen shot as a jpg file.

In Summary

I don’t know how all of this is going to shake out in the end.  It’s not looking positive for the genetic genealogy community.  Regardless, I felt compelled to speak up now, even before we know all of the specifics, in order to warn you so that you can preserve as much of your useful information as possible.  Better safe than sorry.  Don’t delay.

48 thoughts on “Heads Up about the 23andMe Meltdown

  1. Since I have already printed out everything from Promethease which seems to me to be an expanded version of the report I got from 23andMe, is it still important that I print out everything from 23 and Me?

  2. Hi Roberta,
    I’m generally quiet here and read a lot, but can’t keep quiet on this situation. 23/me seems to be turning into something I would NEVER have participated in, but for only to be in that 3rd pond. If / when I am transitioned (V3 chip here) all my answers will be “I’m not sure”. If that answer is not an option, I’ll invent an answer. In my book, demanding my personal information in return for something I’ve already paid for borders on Illegal Activity. How can this not be a blatant HIPAA violation of some kind? Is 23 actually Farbensanto in disguise, the old trickster, with ongoing research begun decades ago? Thanks so much for the heads up on this vile and repulsive turn of events at 23 and (not) me.
    All the best~

  3. Roberta,
    Thank you for speaking out. Your blog post is the tip of the iceberg. I am not on the new platform but I am hanging out in the new forums. You can find out more about the platform (Vanilla Forums here) https://blog.vanillaforums.com/help/moderating-your-vanilla-community/
    At every turn there are problems some of them quite serious. These go beyond the usual hiccups in a new platform. From what I have heard, read and seen the medical information that is now included is not worth the price of admission.

    Many involved in helping adoptees and donor conceived are recommending Ancestry these days. I have a significant investment at 23 and hope that it remains functional but I totally agree that you need to download everything of import to you.

    I have seen very little that is an improvement for genealogists and much that makes our lives much more difficult.
    Gratefully yours,
    Kelly Wheaton

  4. Well, I am a V3 user who had thought that 23andMe was the best testing agent for genealogy because they supplied information about Y-DNA and mtDNA haplogroups as well as autosomal DNA. As a bonus (for me), they also supplied the health analysis. All of that for $100 and $5 per month. I did not mind the research questions. But, that was before last month. Now 23andMe is off of my list. It is twice as expensive as the other two major US companies and appears to be playing fast and loose with my data. Capitalism is great, first they wanted to patent our genes and now they own our genes, and we have no control on how they use them. I don’t think I agreed to this. Their advertising and promotional videos certainly did not allude to this type of behavior.

    I was rooting for 23andMe versus the FDA, boy was I naive.

    Keep up the good work,
    Chuck

    • Thanks for this helpful blog Roberta. I had done most of this earlier, but thought I’d go back in to see the Countries of Ancestry portion again and I got this message: “The Countries of Ancestry Lab is no longer available. Parts of this feature will be available to you once you transition into the new experience.” so I guess it is too late now for that part. Thank you again.

  5. Thank you Roberta. I had planned to test with 23&Me, but that was before they doubled their prices recently. At the $199.00 prices point it is just beyond my budget. I do trust that they see the light and focus on what made them great.

  6. At least they don’t tell you every time you go there that your password is wrong. I’ve had to change it every time I go to the site.

  7. I also have a surgical complications notice, and have not opted out of research – when I click on the link I get:

    “Based on your 6 genetic reports and 12 survey answers

    In the case of a surgical procedure, planned or unplanned, this set of your genetic results and health history information would be important to share with your doctor.

    Barbara Adair, you should discuss these results with your doctor at your next regular checkup or before you have surgery.”

    “A blood thinner called clopidogrel may be less effective for you based on your genetics.

    LEARN MORE
    WHY IS THIS IMPORTANT?

    After certain heart surgeries doctors often prescribe blood thinners like clopidogrel (Plavix®) to help prevent blood clots. Finding the right blood thinning medication is important because an ineffective drug may not properly prevent blood clots, which can result in strokes or other serious complications.

    WHAT CAN YOU DO?

    Tell your doctor about your genetic result regarding clopidogrel. Your doctor can use your genetic information to help find the right blood thinning medication for you when you need it.”

    When I go to the Health overview page, that same drug is the top one listed under “Drug Response.” What is not there is the warning that this might be important in case of a surgical procedure.

    I can’t imagine what they are thinking, requiring you to answer the questions.

      • You must have made a change with them. I just went to health reports and unlocked the reports without needing to do any silly surveys. TKU. Is there away (could not find one) to download the Haplogroup mutations . Much to large to screen print each one?

  8. Thanks Roberta…you always seem to be on the page I’m on right before I get there & I really appreciate you keeping these folks on their toes! I just wish I’d have had my new printer sooner as my old one konked out on me. Better late than never. I hope you’ll address Ancestry.com’s 3rd-party cookie requirement which is like leaving the front door open to any and all hackers & thieves to steal our information & resell it. No basic format..only the new one after the 15th and you probably have heard all the bad reviews on that. I’m disgusted to put it mildly. But…Happy Holidays…& Thanks dear lady for all you do!

  9. Thanks Roberta. I have been “transitioned”. First off, I can’t even find any of the health reports you are talking about. I don’t think I saw them on my pre-transition 23andme either, but that may have been because I was in a state where the health testing was prohibited.
    But looking at the Ancestry portion alone, I’m also required to answer questions about ethnicity here before seeing any of my Ancestry Data, DNA relatives or tools. And even after doing this, for each of my matches, they seem to be showing you your match in a chromosome browser type format, but I can’t find any way to learn the start and end location of the match or find the cMs for my matches. I also can’t find any tools like the former “family inheritance advanced” which would allow you to see up to five matches at a time.
    23andme was barely useful for genealogists before, but now, without any useful chromosome browser, I can’t find anything of value at all. Maybe these kinks will eventually work themselves out but at twice the price, I don’t expect I’ll be seeing any new matches anytime soon and the old ones are much less useful than they were before.
    Does anyone know whether it’s still possible to transfer to FTDNA (if you have v3) or to Gedmatch with the current system?

    • Yes, V3 kits are absolutely transferrable to FTDNA and both V3 and V4 are transferrable to GedMatch. You need to do a raw data download – and no, I don’t know where that is located on the new version of the system.

      • I don’t remember the format and can’t check right now as I’m on the road. But there are two kinds of files to download. The raw data file and the matches file which is in csv format.

  10. Like the person above, I don’t have health reports equivalent to the one you posted for the anonymous person. In fact, the health reports I received from 23andMe have no useful information. Almost every item in the list of reports says “variant not found.” Having recently uploaded my DNA (from 23andM3) to Prometheuse, I know there are numerous medical problems associated with my genes, but 23andMe didn’t report any of them. . . and some of the physical characteristics are wrong (like hair color) where Gedmatch properly guessed my hair color). (‘ve only been a member of 23andM3 since last June or so, so apparently new people get very little information.

      • Yes, but again, those of us on the V4 chip are not getting those health reports and that was NOT what 23andme was saying–and you don’t make clear here either.

        Like Sallyarlene, I KNOW that I have significant-to-know-about genetic variants (hemochromatosis being the biggie). Customers who expect to get useful health information will be severely mislead. It’s irresponsible.

      • My point in this article is for those who are on the V2 or V3 chip, and who have not been transitioned, they have the opportunity to preserve their data – and specifically their health data. It’s unknown how much of their health data will be available on the new platform. The V4 chip people have never had health data/reports so there is no health information for them to preserve. There may be some genealogy data you want to preserve. The V4 people will receive some health info in the new experience. It’s unclear what the V2 and V3 people will or won’t receive with upgrading to the new platform.

    • Yes, that’s all I get too…..variants not found. I don’t see anything about surgery…just traits and things I do not have the variant for.

  11. Hi Roberta,

    I haven’t been transitioned to the new site yet but I wanted to let you know this report screen is identical to what I see, as a Canadian user, on the “old” website.

    The print link, when you click on it, creates a pdf file that includes all the technical details of each report.

    Could your anonymous source be mistaken about what they sent you?

    • None of my sources were anonymous. All of the information in the e-mail screen shots were between me and 23andMe customer support. It’s certainly possible that they made an error, or perhaps there is a difference in what Canadian and US users receive.

  12. Roberta, the section with “Featured Content” does require answering a few questions, because the intent of the tool is to integrate your genetic results with your personal/family health history. I will post a screen shot on the ISOGG FB thread if you want to see an example of what a report looks like, in case you (or others) do want to see that section before they are transitioned to the new experience.

    Answering survey questions is not required to view the individual reports used to generate the Featured Content. Answering survey questions does not commit you to participating in research, which requires explicit consent.

    • I answered on the thread as well. I did show how to access and print the data itself. However, answering the questions does give them the information that they can utilize in their aggregated data – whether you consent for research or not. Based on your comment, I’m wondering if this is gone from the new experience.

  13. I didn’t think I was on the new platform. I tested years ago, and your screenshots are hot the tool has always appears to me. I’m confused. To me, nothing above looks new.

    Research in the U.S. Has extremely specific parameters around it. Being watched by the FDA, they are not playing fast and loose on the back end. All identifying information must be removed and or coded. You must have authorizations. On my profile it still has a selection where I can opt out at any thine. I choose to opt in on behalf of research, because I know they cannot legally identify me to the data if they use it. And if the do, all the earlier I retire?!?! Haha kidding, but if my pathology can hp and make advances in any way I’m in.

    Please let me know if your screenshots are old or new, because that’s the way it’s been for me for years. Thanks! 🙂

  14. Roberta, you referenced “the half versus fully identical segment comparison information is gone now” please refresh my memory on this function and how it was accessed. I am on V3 so maybe I can still access this.

  15. Would like to add the fact that when I first received my results from 23 and (not) me a few years ago, I did print the medical predictions and took it all to my doctor, Monica Gefter, MD, internist / geriatric specialist, and she poo pooed the stuff and said it was irrelevant.

    • My internist and my gyn were glad have the information that I have Factor V Leiden thrombophilia, and one of my medications was changed based on that. Some of the information has proved very helpful–the one I just mentioned, and the verification that I’m likely to have nausea and vomiting after surgery (which *i* already knew, but it’s good to have the info to give any new surgeons I encounter professionally.

    • Dr. Gefter is apparently not keeping up on advances in genetics. The carrier status reports that 23andMe provides are particularly helpful, especially if one is planning to have children or has children who are starting their families. The other health reports (relative risk of breast cancer, prostate cancer, colon cancer, coronary artery disease) are also quite relevant to anyone who is interested in being proactive about their health. I use the 23andMe reports with my patients. One of my patients was predicted to be at high risk for thromboembolic events by 23andMe. She was also found to be positive for the Factor 5 Leiden mutation. Neither of us were surprised when she first developed a deep venous thrombosis and then later developed a pulmonary embolism. I am convinced that her genetics played a role in her having these problems. She and I both take this data very seriously. Some 23andMe health reports are more valuable than others are, but 23andMe customers and/or their doctors who review these reports are wise if they carefully review them and consider medical interventions if they seem appropriate for the patient.
      Sincerely,
      Tim Janzen MD

  16. Just a technical note – a screenshot on a PC (Windows) is Control – Print Screen, not just Print Screen alone. Hold down CTRL, and hit PRTSC.

    • This may vary with which version of Windows you have, but PrtScr and Ctrl-PrtScr appear to be identical in Windows XP/Windows 7. Alt-PrtScr is different: it captures the current window (which would also be the whole screen unless you resized it).

  17. I have never seen any v4 transition to new format if that account also hold v3 testers.

    maybe there will be too much angst and so these accounts will be done together.

  18. Please, don´t be naive. Not long ago 23andme was granted a very BIG sum of money from a private partner to share in exclusivity certain customer info about medical conditions. 23andme explained then that this money from the “data” was the future (and not more the sequencing per se, they can give you that free, but the “surveys” and dna results is where the money is, as Medical centers pays a lot to have for example a user Base with tens of thousands of people with the same medial dicease to compare and extract conclusions).
    23andme is turning into a big GENETIC DATACENTER. And the company has already SOLD some PRIVATE DATA (that of course made the customers sign as “this data will ONLY be share in internal research procedures”)

  19. In response to an inquiry I made to the 23andme customer care department asking where their chromosome browser (called family inheritance advanced…at least in the pre-transition days) might be found now and how I might get the cMs for each of my matches, I received the following reply….

    quote

    “Thank you for contacting the 23andMe Team. We are currently transitioning customers to the New 23andMe. During this transition period, downloads in DNA Relatives and Family Inheritance:Advanced have been temporarily disabled. We are unable to provide a timeline of when downloads will become available again. However, we are working to transition all customers to the new 23andMe as quickly as possible.

    We apologize for any inconvenience. Please contact us if you have further questions.

    Best Regards,

    Maybelle
    The 23andMe Team”

    end quote…

    So for those using 23andme for genealogical purposes, it looks like we no longer have access to their chromosome browser, information on the cMs size of our matches and are unable to download information from DNA Relatives or Family Inheritance Advanced, and they are unable to provide a timeline of when these may become available again.

    Combined with the bugs in the current “transitioned” system, I can’t see any value in using 23andme for people who are interested in genealogical information.

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