The problems at 23andMe
It was big news last month when 23andMe got approval from the U.S. Food and Drug Administration to resume issuing health-related reports as part of its testing.1
A relatively insignificant element for genealogists who’ve tested with that company, health testing is the raison d’être of that company — its real reason for being. Getting that approval even cleared the way for New York and Maryland to set aside some rather silly rules about testing with 23andMe;2 As of Friday, December 4, 2015, 23andMe was cleared to sell its kits anywhere in the United States.3
So all of us who’ve tested there for any reason — and that includes The Legal Genealogist — got the big purple notice on our results pages telling us that, starting November 11th, things were going to be changing.
And particularly for genealogists, it seemed, not entirely for the better. Some features useful to genealogists were to be lost completely — Countries of Ancestry, for example, and the ability to see fully-identical regions (areas inherited identically from both parents, so the individuals are full siblings) versus half-identical regions (segments inherited from only one parent, which could reveal a half-sibling relationship) — and users (old and new) will no longer be able to contact matches who choose to remain anonymous. Even the health reports now available to early users may or may not be available at all after accounts are switched over. And the price tag — ouch. It doubled, to $199 from $99.
The uproar as a result was predictable, especially since so many of the answers to questions boiled down, in the final analysis, to “we don’t know yet.”
Now my test was an early test, so my results haven’t been changed yet. It was only last week that I was able to access a set of results on the new platform.
And it’s clear to me now that — well — at the very very best the new 23andMe site is a work-in-progress. And when all the dust settles and the smoke clears, we may find that it’s significantly less useful for genealogists than the old site used to be. That’s not a given; there is some nice potential to the new site. What’s also not a given is whether 23andMe cares about the genealogical community, and whether it will listen.
So… what do we do now?
If you’ve already tested with 23andMe, the time is now — right now — today — this minute — to save any information that may just up and disappear when 23andMe gets around to switching your kit to the new system.
First, go read Roberta Estes’ post “Heads Up about the 23andMe Meltdown,” at her blog, DNAeXplained. Read the whole thing, carefully, and then follow her suggestion: Download or Print Everything.
Then go read Shannon Christmas’ post on his blog, Through the Trees. Shannon is a 23andMe ambassador (a genealogist who tries to advise 23andMe, when 23andMe will listen), and his post, “Prepare for The New 23andMe,” gives you step by step instructions, with screen captures, on just what to do to make sure you keep as much as can be kept of the utility of the existing 23andMe system.
And the “not now” part? Well, that’s where I have to say, with some regret, that I’m taking 23andMe off my list of recommended testing sites at least for the time being.
Even on sale, the 23andMe kit is more than half again as expensive as testing with either Family Tree DNA or with AncestryDNA — and with Family Tree DNA kits now on sale, the difference is even higher. The genealogical utility of the new website is limited, and it isn’t clear how much better it will get — if that side of the site gets better at all. Even on the health side (a side I personally am not at all interested in), the reports we’re getting now are limited — newly tested kits get far fewer reports, mostly carrier reports, compared to older kits before 23andMe ran into its problems with the FDA.
Bottom line: if you tested with 23andMe back when, you need to act now to preserve your results. And if you haven’t tested yet, well… not now. Let the dust settle first.
SOURCES
- See Judy G. Russell, “The winds of change,” The Legal Genealogist, posted 8 Nov 2015 (https://www.legalgenealogist.com/blog : accessed 5 Dec 2015). ↩
- See ibid., “NY and MD limits on 23andMe,” posted 23 Dec 2012. ↩
- See “23andMe Genetic Service Now Fully Accessible to Customers in New York and Maryland,” posted 4 Dec 2015, Newswise.com (http://newswise.com/ : accessed 5 Dec 2015). ↩
Thanks, Judy, for this valuable article.
Glad you found it useful.
I wNt to thank you for “clearing the mud” on all of these changes. I am also an early tester, (well a 1 1/2 years ago) but I am also an adoptee, so the health portion is somewhat interesting, but not near as vital to me as the research! I am going to my desktop right now to take the advice of all three of you. In addition, I will be advising my clients who are interested “not now” ! Thanks, as always for your valuable information.
Kristi, I sincerely hope we can get things back on track enough at 23andMe that adoptees can put it back on their lists, and soon. But… sigh… not now.
As a Maryland resident, I was happy to hear about the change in Maryland law. I haven’t tested with 23andMe, and now I will have to wait; but I assume this means that if I ever do want to test at 23andMe in the future, I do not have to pretend I live out of state.
Correct: you can even (gasp) use a credit card billed to a Maryland address.
I’m thankful that I read Shannon’s article before the switch happened to my kit. I was able to preserve some of my data. I might not yet know what to do with it, but it is mine. Absolutely, if you have not yet been switched, do what he advises. The new site is different, and things have disappeared. Not a happy camper here.
Listen up everybody!! Debbie is the voice of experience here. (My own kit hasn’t been changed yet.)
My kit hasn’t been changed yet either except the matches page. My name has always been on my account so I will stay visible to matches.
Oh my, Judy. Thanks for this heads up. Wouldn’t you know this is the company I chose for testing the DNA of my 91 yr old Mom. I will go and grab her data as soon as I finish this comment. I am completely uneducated when it comes to interpreting DNA results and plan to meet with a professional in our area next month. I need to learn. All the rest of our family testing has been done on Ancestry or FtDNA. Thanks again.
Yep, go get everything you can right this minute!
Grab anything you’ve written on your profile page too. I couldn’t find how to access that information, once I got switched. (Of course I may have just missed it… I have to keep re-reading Kitty Cooper’s blog post to be able to navigate the “new” 23andMe.)
Good idea!!
My brother is willing to get tested by one of the dna kits however he is worried about who owns the information and can access his dna information. Evidently his wife was involved, as a lawyer, in a court case some time ago. Can you please clarify some of these legal factors?
I’ve written about these topics many times. As for who owns the DNA results, please read:
https://www.legalgenealogist.com/blog/2014/09/14/dna-ownership/
https://www.legalgenealogist.com/blog/2012/03/04/who-owns-your-dna-test-results/
As for who can access it… there have been no more than a handful of cases where genealogical DNA testing results have been sought in any way by the police. These have all been major cases such as murder cases and all cold cases where all other leads have been utterly exhausted. DNA testing companies have never turned over data without a search warrant properly issued by a judge. On one known occasion, information in public databases, voluntarily uploaded by a user, has been used as a lead in an investigation to provide part of the case for getting a search warrant. Nobody has been rousted out in the middle of the night.
Please read the following:
https://www.legalgenealogist.com/blog/2012/01/11/dna-and-paranoia/
https://www.legalgenealogist.com/blog/2015/03/15/big-easy-dna-not-so-easy/
https://www.legalgenealogist.com/blog/2015/05/03/facts-matter/
I preferred the old 23andMe.
I soooo dislike that they have taken away… besides the already mentioned vanished features, in your article…
a. The “general search frame” and replaced it with a “search ONLY within your immediate DNA relatives frame” and that doesn’t always seem to work either with that psycho: “tag filter for your search” garbage B.S.
And b. they took away the pages on the DNA relatives!!! Which was abundantly easier than, having to reload all of them to get to that number 887 on the list…on one single page!
and c. The inbox and sent box was soooo much easier to keep track of who sent what and when, in one singular thread! Now it’s chronologically in order of when you sent a message and you cannot access the sender’s profile, from the message profile icon anymore either!
Who the heck came up with this crap and dared to call it improvement?!
We have to act now. Act how? I am so confused and computer illiterate. Oh well. I tested with all three companies from Family Tree to 23 and Me. Basically I got the same results back except 23 and Me added a twist of 1% Nigerian. (That has me really checking the ancestors out.) But what will 23 and Me basically do to my results? I have folks who are “cousins.” Some of them have corresponded with me. But what terrible fate awaits my results? Curious.
Just went to 23 and Me site. What a mess. I never could access the folks who are related to me or anything else. Its all gone. So, I wasted my money last year. I WOULD NEVER recommend this website now to anyone. Talk about a screwed up mess.
Don’t worry about it for now, seriously. Yes, it’s a mess, but it’s not gone — just in transition. We can hope it gets better. Focus on your low-hanging fruit at Family Tree DNA and at AncestryDNA for now and leave 23andMe alone for a few months.
Judy! I know you’ve heard this a million times, but I’ll say again that you do a fabulous job of cutting through the junk to provide solid advice. Based on one of your previous posts, I took the leap and did my AncestryDNA test. Thank you for giving me that little nudge!
I was ready to pull the trigger on the 21andMe test today, when I decided to do just a little more research before spending that much money. I’ve spent the last half hour reading your most recent advice on 21andMe…and you’ve just saved me $199. Thank you. I feel like I should take you out to lunch, or something. 🙂
If I understand your info correctly, at this time…I only need to do the AncestryDNA test which can be transferred to FTDNA (so no need to do that one, too). Is that right?
My son is next up for AncestryDNA as I do not have any older living relatives.
Thanks a bunch for clearing the fog for us beginners!
Glad you’re finding the blog information valuable!