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Heads Up about the 23andMe Meltdown

Roberta Estes

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.

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.

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?

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

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

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.

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.

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.

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

Once there, you will see the comparison tool.

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.

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