A mixed bag for genealogy
Let’s get this out of the way up front: The Legal Genealogist has never been much of a fan of 23andMe for genetic genealogy testing.
I know there are genealogists who swear by it, and who’ve had all of their family members tested there. I know that people have made important breakthroughs using its tools. I know that it probably has the best ethnicity estimates currently available.1
But it’s been crystal clear, from the very start, that the focus of 23andMe was never on genetic genealogy, but rather on health information.
The whole game plan at 23andMe is health: it wants to collect genetic information from huge numbers of people to use and sell that data for medical and pharmaceutical research, and it wants to get those people to pay for contributing their genetic data to its data pool by offering some personal health information in return.
To the extent that genetic genealogy information is also provided, it’s basically been coming along for the ride. An afterthought, and not the main attraction.
And that most assuredly is not going to change with this week’s announcement by 23andMe that it has now obtained the FDA approval it was seeking to provide basic health information to its customers, and will be rolling out a new and greatly changed reporting system — with a new and greatly increased price — for the future.2
It’s the new price of $199 — twice as much as anybody else is charging for autosomal testing these days — that is likely to prove the biggest sticking point for genetic genealogy in the future.
The second big sticking point: the whole system of reporting, contacting and sharing data with matches is being completely revised. This isn’t all bad: the current system has meant utter frustration for genealogists who can see that they have close matches in the 23andMe system but can’t find out who they are or get them to respond. Right now, for example, I have a first cousin and a second cousin match at 23andMe who haven’t responded to invitations — and I have no way to break through to contact them.
The new system won’t allow anonymous participation in the DNA Relatives part of the reporting — the genetic genealogy matching system. Anybody who’s testing solely for health purposes can stay anonymous but won’t be reported as a match in the DNA Relatives part. We won’t be able to send them invitations to share data, either.
The transition to the new matching system is likely to be a bit chaotic. All pending invitations are going to be cancelled. Anybody using a nickname in the system will be converted to anonymous — meaning they won’t be in DNA Relatives, though participants will be able to use initials. The number of matches allowed (which was about 1000 plus any accepted or pending introductions) will increase to 2000.
Once the transition is complete, however, anybody in DNA Relatives will be able to message anybody else in DNA Relatives, and a new Open Sharing option will allow participants in DNA Relatives to share genetic information with anyone else who chooses that option without having to use the cumbersome introduction system.
Everybody who’s tested with 23andMe will be transitioned to the new reporting system, and to the extent that the reports are available under the testing platform in use at the time of the test, will get the new reports. The hitch is, some of the older tests didn’t sample areas needed for some of the new reports, and those testers would have to retest to get the benefit of the new reports. But all older health reports, for those who tested before the FDA suspended health reporting by 23andMe, will continue to be available.
Things we are definitely losing under the new reporting are:
• The $99 price. A new test is now $199, and there’s no option to just get genealogical information. You have to pay for the health reports whether you want them or not.
• Our personalized DNA melody. Not a big loss, really, but hey… It was fun…3
• Global Similarity Map — a feature that let you see deep ancestral origins on a two-dimensional plot as against others who’d tested.
• Haplogroup Tree Mutation Mapper — a feature that showed which particular mutations in a person’s mitochondrial DNA or Y chromosome were used to determine the individual’s haplogroup assignment.
• Family Inheritance Genome View — a feature that showed a comparison of two individuals for specific traits or the overall genome in the form of a chromosome browser.
• Inheritance Calculator — a feature that allowed a tested person to combine his or her DNA with another person’s to find out the possible traits of the couple’s child.
• ABO Blood Lab — a feature showing the genetic basis of a blood type.
• Reynold’s Risk — a tool calculating a 10-year risk for heart-attack using information including cholesterol and blood pressure.
How this will all play out in the long run is anybody’s guess. But one thing is for sure: the new 23andMe has the same focus as the old 23andMe — collecting our genetic data for its use in medical and pharmaceutical development.
Genetic genealogy is just along for the ride… and that ride is likely to be even bumpier from here on out.
SOURCES
- Which isn’t saying much, since I continue to maintain that all ethnicity estimates today are not a whole lot more than cocktail party conversation starters. See e.g. Judy G. Russell, “Admixture: not soup yet,” The Legal Genealogist, posted 18 May 2014 (https://www.legalgenealogist.com/blog : accessed 24 Oct 2015). Also, “Playing with percentages,” posted 24 Nov 2013; “Those pesky percentages,” posted 27 Oct 2013; “DNA disappointment,” posted 15 Sep 2013. ↩
- See “A New 23andMe Experience,” posted 21 Oct 2015, 23andMe Blog (http://blog.23andme.com/ : accessed 24 Oct 2015). ↩
- See e.g. Judy G. Russell, “Noting your DNA,” The Legal Genealogist, posted 19 Aug 2012 (https://www.legalgenealogist.com/blog : accessed 24 Oct 2015). ↩
I totally agree with you I only tested myselef there all of my other 11 test are at ancestry..they all have problems but I prefer testing there and uploading to Gedmatch and FTDNA. I have 900+ matches at 23 and am only sharing genomes with 15 people and I sent invites to a lot more than that!
I get that there are lots of not-so-good things about 23andMe. But I roll my eyes at the crying over the 199.00 price tag! Why? Because last year when Canadians could no longer purchase the original 99.00 DNA Kits (which btw included health before the FDA cracked down on them) and were switched to the Canadian version (which included health) the price shot up to (are you ready?) 199.00
When I complained loudly about this, my American friends shot me down. Tsk tsk I was told – don’t complain, at least you are getting health reports. I was given all kinds of reasons (by many of my American buddies) as to why the 199.00 price tag was needed!
So here I am gritting my teeth, shaking my head and wondering why it was okay when we Canadians got shafted for 199.00 but it’s not okay now that the price has hit our southern neighbours.
You didn’t hear those sorts of things from me. I repeat: I’ve never been a fan of (or apologist for) 23andMe.
Those are my thoughts as well. The price the Americans are now paying is the same price that we have been paying all along in the UK so at least we’re now all on a par. We were originally charged $79.95 for shipping on top of the $99 cost of the test. When the health reports were relaunched the price was charged in sterling at £125 with shipping included. However, for once those of in the UK are on the winning side as we get extra health and trait reports that aren’t available in America. We also pay twice as much for the AncestryDNA test which is $99 in the US but £99 plus £20 shipping in the UK. FTDNA are the only company who sell their test at the same price in different countries, and who charge reasonable shipping fees.
“The new 23andMe has the same focus as the old 23andMe — collecting our genetic data for its use in medical and pharmaceutical development. Genetic genealogy is just along for the ride”
Couldn’t the same be said for DNA Land?
Except for two huge differences: DNA.Land is free and it’s associated with academic research, rather than for-profit.
It’s my understanding that 23andme is not doing this for profit. Check out Christine’s history. They are genuinely interested in helping to do the research to help medical science find the answers to some very serious illnesses. And the information they are gathering is for that reason. They can sell my DNA to as many people as they want, if it helps medical science find cures. I am not by any means enamored by pharma, but they have the money and it takes lots and lots of money.
It’s everyone’s choice whether to participate or not. But I doubt — sincerely — that this is pure altruism.
Perhaps you meant to say “All pending introductions are going to be cancelled” rather than “All pending invitations are going to be cancelled.” Christine M. (the 23andMe Community Manager) said the following on the 23andMe Community in the “DNA Relatives changes for the new 23andMe experience: “Remember that there is a difference between an *introduction* and an *invitation.* An introduction is done within DNA Relatives and is a way to contact anonymous match. Introductions will not exist in the new 23andMe.
Invitations on the other hand are sent without the option to be anonymous, and can be sent to any other member regardless of whether they appear in DNA Relatives. You can also send invitations via email. Invitations are *not* being canceled or deleted, and will still exist in the new 23andMe.”
The language from 23andMe is fuzzy and the distinction between an introduction and an invitation isn’t at all clear to current or future users. But you’re right, given 23andMe’s explanation, that it may mean that pending requests between two named members won’t be cancelled. We’ll have to see. (My guess is, everything gets cancelled, and starts over.)
To clarify, here is additional comments from Christine at 23andMe: “[I]n the event that a DNA Relatives introduction was sent that included a sharing invitation, that invitation will be canceled. There are a couple of reasons for this, but mostly it is because invitations attached to introductions are not the same as other invitations because they maintain the recipient’s anonymity.
We would not be able to display this pending invitation without exposing the profile name of the individual it was sent to.
Any invitation sent outside of DNA Relatives – via email, from a member’s profile, or from Manage Sharing – will be maintained.”
In other words, all of the “please share with me” requests sent the way 23andMe asked us to send them (since you CAN’T send to an unknown person via email etc.) are going to be cancelled.
I dont know what the old 23andMe was like. You mentioned that one can send invitations by email? Out of my top 20 matches 11 of them are anonymous. The only way to contact them is to click on the button to send a Sharing Request (Im assuming a notification will be sent) and the Messaging feature on the right panel. Is that the email you’re referring to?
With regard to “Anybody using a nickname in the system will be converted to anonymous” perhaps some more information would help. Christine M. (the 23andMe Community Manager) said the following on the 23andMe Community in the “DNA Relatives changes for the new 23andMe experience:”
“…only account names must be legal names – this is the name you enter when you first create your account – as you must provide true and accurate information in order to accept the Terms of Service. This also ensures that in the event you lose access to your account your legal name is on record. However your account name is not displayed anywhere on the site.
The profile name, which you select when you register a kit and which you can edit at any time within your settings, can be any name you choose. In the new DNA Relatives, participation requires that you display some version of your profile name – first and last name, first name and last initial, first initial and last name, or both initials. Your profile name can be whatever name you choose, although we do encourage the use of a name that will be helpful to your connections.”
This profile name vs. nickname thing is sort of confusing …what is the difference between a nickname and a pseudonym?
If you’re already participating in 23andMe, you can read its explanation here.
Just wondering, Judy, do you still advocate testing with 23 and Me for genealogy purposes then? It seems that you would despite some of the changes not being very useful for family history purposes.
I’m going to revisit the question after I see the entirety of the site changes, Pat. My general sense is that for some test groups (people with unknown parentage cases in particular) you still need to fish in every pond — but it sure cements my view that 23andMe should be the last place you spend your testing dollars.
I completely agree with Judy here. For searches where people are looking for unknown family members we had recommended fishing in all 3 ponds but I have been finding myself adding recently “and if you can afford it test at 23andme as well” and this was before the huge price increase.
Perhaps this will change but the number of real decent genealogy matches has been declining at 23andme anyway and it is questionable to me whether any of these policies is going to increase the value of 23andme for genealogy.
I will hold judgment as well, but I am not feeling too optimistic about the future of 23andme for genealogy.
We really are going to have to wait and see here… but…
I was hopeful but now that there is more detail I am quite dismayed. Cancelling our invitations that we spent hundreds of hours sending to our top matches who will become unreachable monoliths is simply wrong. Every week I get some new response from an old match who just noticed my invitation. Also, clearly we aren’t getting an ‘in common with’ function that was promised almost a year ago.
Plus, the whole you can use any name as your profile name and then a version of that for your DNA name is just as anonymous as just being anonymous. I don’t understand that rigmarole at all!
I’m an adoptee but I’m not sure I would recommend them to other adoptees. I’ve just spent too much time with their invite system to have them just toss all that time away… an adoptee is now better off spending that time building their cousin’s trees on Ancestry and looking for overlapping ancestors that mucking about in their system.
Kasa
I hear you, Kasa — and am just as unhappy as you are about this. But…
My first test was on Ancestry. My closest matches were all 4th Cousins. My goal is to find my unknown grandfather. Because Ancestry doesnt offer the Y-DNA test i got tested for Autosomal and YDNA at FTDNA. Found my closest match there was 2nd Cousins Once Removed. For a year my research was stalled. Just last month i ordered the 23andMe test. Shocked and excited – I have a First Cousin match with 7.66%. This match, a male, could be a grandson of my unknown grandfather. I sent him Sharing Requests and messages. No response. I know he is my match via my father because we have the same Paternal Haplogroup. BUT – he is Anonymous. I dont know if he is active on the site, alive or dead? There is nowhere on the site that indicates if the match is active. On Ancestry, it shows when a match last logged in. I dont know if my requests were really sent or received. On FTDNA, each match has their email address available. There are no Anonymous people on the match list (if you want to be anonymous then you set your privacy settings and you dont have the privilege to contact people. I feel a bit cheated on 23andMe because I got a Sharing Request from one of the Anonymous matches — which leads me to believe the Anonymous have the upper hand. I dont think they should have the ability to initiate a contact if they wish to be anonymous. I’ve come this far in my 15 year search to get shut out by the closest match who is anonymous. It feels like testing with other sites is worth more than here on 23andMe.
I wonder about their HIPPA protocol and their seemingly willing attitude to practice medicine without a license.
True genetic testing for medical reasons require concomitant counseling in my mind.
It’s not at all without a license when it’s providing some basic data under FDA approval. And this isn’t governed by HIPAA (the act is abbreviated HIPAA, not HIPPA) — first because 23andMe isn’t a defined health provider and second because any participant will be signing a release allowing specific disclosures.
Thank you.
Hi Judy, does this mean that the customer and genetic data that 23andMe is collecting from (and delivering to) their clients has not to be treated in a HIPAA compliant way? This is surprising. They handle sensitive genetic data of each customer, in particular the health data.
HIPAA does not apply to genetic genealogy testing. The law only affects “covered entities” — health plans, health care clearinghouses, and health care providers, and only if they transmit information in electronic form about certain “covered transactions.”
I started with FTDNA – as the National Genographic Project – and kept adding discounted tests from there, up to 111 YDNA markers. I quickly reailsed that 12 markers was 100% irrelevant to anybody’s genealogy search – at that level everybody is related (from many, many thousands of years ago) – and that the only legitimate way to find a proper match was to get as many matches as possible.
Having said that, I still have no clue about matching my DNA with someone else, and in all the years since the Genographic test I am yet to find a single person who will admit to being related. I do shower, I swear!! LOL!
At one point I had my DNA test done with another lab to double-check FTDNA’s accuracy, and am very happy to report they did match, 100%.
I moved on to 23andMe because I was curious about the health reports. At 66 I already know what my major ailments are, and while 23andMe did not have them standing out with yellow triangles next to them they were at least listed as risks.
From my family tree reserch I also believe I have negro blood… 23andMe confirmed this, but the percentage shown is so low I am left wondering if that was due to such a massive dilution through the last seven generations, or if it was just a few drops left over from the “March Out Of Africa”!
All in all my experience has been of collecting information, the more I have of it the more I understand myself. 23andMe has helped, and their presentations have been very legible and acceptable – as a very visual person, pie charts and graphs tell me the story so much better than a page full of numbers.
My take on the DNA search is that it will be like your family tree research – a long-term project. And, also just like doing your tree, you will need to canvass a wide range of resources to do it properly and get the most reliable results. Both FTDNA and 23andMe have been useful to me, for different reasons, and if you can afford more tests with other providers I encourage you to keep looking.
I have no problem with testing widely and depply — and encourage it. But I’d sure like to get a little love in return from the testing companies — 23andMe being about the hardest to use and to benefit from.
I have trust issues with the medical field. The main reason I have not tested with 23 and Me has been because their main focus was not genealogy. I have stuck with FTDNA and Ancestry for testing, and LOVE gedmatch.com as a follow up. 🙂
GedMatch offers excellent tools for doing the one-to-one comparisons, that’s for sure.
Seems to me 23 and ancestry are both in the collecting and selling business and both are making customers pay for their collecting. I think I am done with DNA testing. I don’t trust any of the companies doing it.
My questions:
(1) Will future 23andMe users, there to see if they carry cystic fibrosis genes, opt in for genealogy? Frankly I see my steady supply of new matches drying up.
(2) Will the Ancestry raise their price now, or stop offering sales ($69 for a short time last month) – particularly if they boost their own health offering? Why lower prices if you don’t have to?
Short-term I think this is good. I’m already getting more invitations accepted on 23andMe, and open sharing should add some public matches. And most of the new fish will be in one pond now instead of two. But the only way we’re going to make great strides is if the price comes down to $49 – and this was a big step backwards in that regard.
I share your concerns, Rich… but we’ll just have to see how it plays out.
Five years ago we chose to use 23andMe for my daughter and son-in-laws DNA tests because my son-in-law was adpoted and they wanted the medical info for their children. Earlier this year my son and I also tested with 23andMe. I was hoping the medical would be back and it is! I strongly feel that many illnesses and medical conditions are genetic in nature. But I have also uploaded raw data to FamilyTreeDNA and gedmatch. I am still looking for cousins and my son-in-law’s birth parents.
Anyone dealing with an unknown parentage situation has to consider all the options, Donna, and you’re certainly doing that. I just wish it wasn’t going to be so expensive, and so all-or-nothing, at 23andMe going forward.
Promethease.com is a decent, and very inexpensive ($5.00) alternative to 23andMe for health-related DNA information. Raw files may be submitted from any one (but only one) of the three big names in DNA evaluation (FTDNA, Ancestry and 23andMe). Results are extensive and may be viewed online for 45 days and/or downloaded. Worth a look.
A few weeks ago, at age 50, I learned that my dad is not my biological father. Since my Dad is documented Northern European (and my looks are decidedly NOT!) I thought this would be a good place to start. In the morning the test at 23andme was $99. That night, it was $199, but included the carrier panel. Given my unknown paternity, we decided it was worth the $ since we have nothing else to go on. At this time… I am anxiously awaiting results (and I have been stuck at the “chip transfer” stage for 5 days.)
Best of luck to you. Hope you find what you’re looking for.
I’m just on the verge of buying from 23andme since they resumed the health markers but after your comment wonder, if I bought the test from one of those you listed and sent it to prometheus, would there be adequate data for a report at least as extensive as the one provided by 23andme. Do you know?
Having seen the new 23andMe health reports, you will get far far more from Promethease than from 23andMe.
Hello Judy
Thank you for this great site. I understood that FTDNA also has removed about 3000 medically related SNPs
It makes it hard to decide, I would be doing the DNA test really to get the most extensive data to input into Promethease
23andme is sadly too expensive now, but FTDNA does not provide every polymorphism
I don’t believe AncestryDNA is removing the medical SNPs as thoroughly as FTDNA (which makes FTDNA a perhaps safer choice for people only interested in genealogy). And the AncestryDNA raw data will work for Promethease. (And then you can upload it to FTDNA and fish in both ponds for cousins!)
The changes are horrible. Gone is everything of interest for my research.
There is not even a search box! The site is ugly and demanding of members to click on slow and boring pages with questions. The same questions are again asked on my following visit. There message boxes are very small and impersonal. I do not recommend using 23andme. If a potential member can possibly take a look at the changed site before using them, I believe they would prefer to spend their money on another more helpful site. I have downloaded my data to other places that are more research oriented. Too bad they removed the interesting stuff. I’m really upset at the changes and I wrote them how I feel though I’m sure no good will come of it.
Thanks for having this site for voicing my opinion on the subject of 23andme and the horrible changes. The site is plain ugly and user unfriendly.
D. Smith
I do not like the new look and configuration of 23andMe. I loved the old look. It was easy to use and navigate. Now, I just feel confused when I try to look through the website (which is strange since I’ve been a customer for quite some time).
If I had known that 23andMe was going to change so drastically, I would have taken screenshots of the old format for future reference. Now, we are stuck with this confusing mess.
You have to wonder whether or not they tested the website before they changed it. I can’t believe that they did this to the website. Prior to the changes, I used to log in at least four or five times a week. Since the change was implemented, I’ve only visited a handful of times and left feeling frustrated.
I hope that they redesign it again. I’d love to see them return to the old look or something like it.
Sounds like the people who run 23andme are like the people who run Intuit: stupid, greedy, and contemptuous of their potential customers.
It appears that 23andMe now has a $99 genealogy-only test along with the $199 health and ancestry one. I would surmise that Ancestry DNA has completely muscled their way in with $99 (and under) tests and expanded their big data set where corporations are finding it more attractive (especially since many are linked to well-researched trees). The value in the company is the data, not what the customer does with it. Ancestry has articulated plans to offer similar health reports with FDA approval right off the bat (perhaps that’s one reason for the format change – more health-related SNPs?). Unfortunately, the user experience is still frustrating bad in the “new” experience, and we are bifurcated from our non-US friends (with the 23andMe forum moderator saying there’s no timeline to join the two). It certainly isn’t the FDA’s fault…
Nope, can’t blame the FDA for this…