Have you used 23andMe? How'd it go?
June 22, 2012 6:57 PM   Subscribe

Have you used 23andMe? How'd it go? While it's probably not very possible to fact check your risk for x y and z, did it get the basics right for you? Eye color, hair color? If it told you you were 1/12th American Indian, would it be a safe bet that this is actually true? Any surprises? Any confirmation of something you had already suspected?
posted by Feel the beat of the rhythm of the night to Technology (21 answers total) 77 users marked this as a favorite
I did it when they had a sale a few years ago. The ancestry is not particularly interesting to me because I know that I'm pretty much 100% northern European already. Plus, I can't see my dad's side unless I get one of my brothers to sign up (no Y chromosome to look at).

They did get my eye color right and the fact that I have curly hair.

On the health markers, I would say that some things were a surprise and other things, not. I have a family history of autoimmune disease, so it's not surprising that I'm at a higher risk for, say, psoriasis. It was surprising that I am apparently at a lower risk for melanoma, because I thought my fair, easily-burned skin meant that I was at a higher risk overall. I'm also not a disease carrier for the scary stuff like breast cancer so that was nice to know.

One really annoying thing is that they supposedly have data on my risk for Alzheimer's Disease but they won't tell me what it is unless I pay them more money. Their website says that I would need to upgrade to a "new DNA chip," but that they still have my sample. So, basically they could run the test anytime, but they won't unless I pay for it. It seems somewhat unethical to me that they would do that.

So, would I do it again? It was an interesting exercise, but nothing earthshattering, and I'm left wondering about the tests that they won't run for me without more money. On the other hand, if I was really worried about being a disease carrier for certain diseases such as breast cancer or cystic fibrosis, it might be a good way to find that out.
posted by cabingirl at 7:23 PM on June 22, 2012

I had it done. It correctly predicted things like lactose intolerance, my brown curly hair, Jewish ancestry, but it incorrectly predicted my eye color by a huge amount. I was homozygous for all the mutations predicted light light blue eyes, but my eyes are dark green / brown. So, there are still things missing in our understanding of certain things that are very complicated, like eye color.

One thing that will really help you interpret your results is to use a (basically free) service like Promethease to really delve into the literature that 23andMe doesn't go into. When I used Promethease to analyze my 23andMe raw data, it revealed that I was a hyper metabolizer of certain hormones and drugs, which actually explained some mysterious responses that I had to some treatments. Another interesting website is GEDmatch, where you can input your 23andMe raw data and get a computer generated image of what your eyes should look like based on the mutations you have.
posted by permiechickie at 7:26 PM on June 22, 2012 [34 favorites]

All of the basics are correct, e.g., Eye Color, Hair Curl, with the caveat that 23andme does not list very many "traits" that I would consider easily identifiable. I wasn't super impressed with the information listed, although it's cheap enough to keep my account open, and every once in awhile, it's entertaining.

What's appears shockingly accurate, however, is the "Relative Finder" feature. Mind you, I don't know if they use demographic information that I've entered along with my genetic information. However, if they are basing this on genetic information alone, it seems extremely accurate.
posted by aflores at 7:26 PM on June 22, 2012

I did it, and yeah, there's not a ton of stuff you can instantly fact-check (doubly hard for me, since I'm adopted and know very little about my family history) but what there was seemed accurate enough.
posted by restless_nomad at 7:37 PM on June 22, 2012

I tested a couple of years ago on one of their half-price sales, before it became a subscription service. The health risk information is interesting. I think that they take a responsible approach in providing the research basis (with links to NIH publications) and expressing the outcomes in terms of odds ratios. Now I work with statistics, so I am good at interpreting things like that, but the presentation tries not to make things too sensational, my guess being that they do not want to spook casual users.

Obviously the ability to confirm which of the list of potential maladies will eventually kill me off will take a long time to play out. I was a little more likely to have a condition that I actually have, I really hope that the prostate estimate is accurate, and it explains my stable hairline. I spent a lot of time reading medical research that they linked to, so it was a good basis for reflection on lifestyle and mortality. The information on drug responsiveness explained something related to an actual treatment I used, and confirmed that is was probably a better choice than switching to a new/different/supposedly better treatment that came along. Again, it is all about the odds, but that was a very practical benefit.

The geek response is that the Haplogroup typing (K1a, R1a1a*) is Big Fun -- nothing surprising, but awfully cool to know and think about. If you are really into it you can download the raw data, I think it is cool that I have a 14MB file with my sequence on my desktop. I find the relative finder server kind of meh, I get a lot of requests for data sharing from probable 6th cousins, I am not too into that.

On preview, my friends who run sequencers are always talking about getting new chips. It sounds strange cabingirl, but it is a real thing and they are essentially running the test again, the benefit being that they banked your sample so you do not need to resubmit (as far as I can tell). I just don't have the money to upgrade.
posted by cgk at 7:40 PM on June 22, 2012 [2 favorites]

I did this last year and have been happy with the results. They got the basic stuff right, the ancestry stuff has been fascinating to discuss with my dad and aunt (we all did this together), and, like cgk, I really like and appreciate the way the health risk info is presented: in terms of odds, with links to studies, and with conflicting studies provided alongside each other.
posted by rhiannonstone at 8:12 PM on June 22, 2012

I did 23andMe about a year ago.. I love this sort of thing, so I found the whole experience fascinating. It did get my basic traits correct. Personally I found Relative Finder particularly fun. My father also did 23andMe so I'm able to identify which side of the family each relative I share with is through.

I did get one surprise. They are frequently updating the health reports with new discoveries/screenings.. so about six months after my results were originally loaded, I found out I carry one copy of a mutation associated with some rather unpleasant syndrome I'd never heard of.. so given that information, if I were to consider having children in the future, I think it means I would want to screen my partner. Although it's academic to me right now, it seems like useful information to have.
posted by everybody polka at 8:14 PM on June 22, 2012

Did it. Love it. It was accurate and frightening. Both my wife and I signed up.

Also, they recently dropped their subscriptions. It's a one-time only fee now.
posted by blue_beetle at 8:17 PM on June 22, 2012 [2 favorites]

I've used 23andme.com. I was surprised to learn that I was a carrier of cystic fibrosis, which was incredibly important to know. Luckily my partner's parents are on 23andMe, so we learned that he was not a carrier. The site also told me that I was not Native as I've been told, which raised a whole bunch of questions. I contacted them and they said it was accurate up to 5 generations back.

Most of the information was of entertainment value. I have been in contact with many people who are distant relatives, but I haven't yet found a solid connection. Additionally, the medical information is based on probabilities and is therefore not a diagnosis.

In regards to traits, the results were correct for eye colour but not hair curl.
posted by angelaas525 at 9:07 PM on June 22, 2012

For the price they are charging now ($300), you will be able to have your whole genome sequenced withing 3-5 years.
posted by euphorb at 10:27 PM on June 22, 2012

If you've used 23andme and live in the US, what do you think about the future implications to your health insurance? I've always worried that if I found out something that would affect my future health prognosis, that data might not always be under my control. I don't trust 23andme to not sell out if they run out of money from subscribing customers.

Given the likely Supreme Court decision to strike down most of the health care reform bill, including the ban on pre-existing conditions exclusions for health insurance, that's a pretty terrible fate if I ever lose my job. I actually bought a 23andme kit and never sent my test in because I decided that in the current US health care environment, it's better for me to not to know about possible genetic risks.
posted by SakuraK at 11:01 PM on June 22, 2012 [6 favorites]

I got 23andMe for both genealogical use and general interest a while back when there was a sale. The Relative Finder found a few relatives -- some that seem genetically rather close, but either they didn't know enough about their trees to verify a relationship, or they were non-responsive. The closest I got to verification was someone who is descended from a lot of Pennsylvania Mennonites, as I am as well along a couple of my lines -- but we weren't able to find the exact link.

Then, just yesterday, I got an email from another genetic relative. We had corresponded earlier, because 23andMe showed us to be a match. But at the time, he didn't know of any names in his family tree that matched mine, so it was a dead end.

Yesterday, he wrote "I have new leads, and of it's ok i have another question: is your [X] family from Iowa and/or Pennsylvania by chance?" The surname in question isn't outrageously common... and my ancestors of that name were from Iowa. And Pennsylvania.

It turns out that the guy is actually my fourth cousin once removed. We can now verify this. So we both carry a common bit of genetic code from my great-great-great-great grandparents (they are his great-great-great grandparents) who were born circa 1810. He lives in a completely different part of the country and I am pretty sure does not know anyone that I know in my family. In a way, it's very strange how far people can spread from a single origin. I also find it fascinating.
posted by litlnemo at 1:15 AM on June 23, 2012

Oh, to answer the question a bit better -- It did get a lot of the traits right, such as bitter taste perception, lactose tolerance, and (as I already expected) fast metabolization of caffeine. The eyes said "likely blue" and mine are green, but they also said that there was a 25% chance of green eyes with my genotype.

It's hard to say whether any of the health-related stuff is useful. But it's interesting. It says I have increased risk for one thing that I actually have -- and decreased risk for another that I actually have. Anyway, they are very careful to let you know that none of these results mean you absolutely are or are not going to get something.

Someone above mentioned the GEDMatch eye color predictor, which is cooler, It think. It shows you a picture of the eye -- not just the main color, but other details such as multi-colored eyes and starbursts. I used the data from 23andMe on GEDMatch. I gasped when I saw the eye color picture because it got my eye color exactly right, unlike 23andMe -- green, with a gray rim around the outside if the iris, and a brown ring around the pupil.
posted by litlnemo at 2:10 AM on June 23, 2012

They did get my traits pretty right (including the tendency to overeat, heh). The most valuable thing for me is that I now know I'm a carrier for the Cystic Fibrosis mutation, and I can have my fiance tested before we start thinking seriously about kids. With my cousin, they didn't know about her mutation until she was already pregnant and they tested her husband then as well. I'd rather know in advance if that 25% chance is there or not.

I also apparently have an oversensitivity to a particular blood thinner that caused my grandfather tons of issues near the end of his life, presumably because the knowledge about this particular drug and how different peoples' sensitivities to it can be wasn't there when he was on it.

I mostly did it to look for the Parkinson's mutations, as both my maternal grandparents had Parkinson's. I was not a carrier for the gene they originally associated with it though I am for one of the newly discovered genes. Still, I wanted to know. My brother didn't and never looked at that particular answer. For me, knowledge is power, and even if I can't do anything to change my genes, I can do the appropriate end-of-life planning in the event I am at high risk for some of these conditions and diseases.
posted by olinerd at 3:45 AM on June 23, 2012

Those of you who did this when there was a sale, how much did it cost? I am seeing $299 on the website right now. I wouldn't mind getting this done but am willing to wait for a better deal.
posted by LarryC at 12:09 PM on June 23, 2012

LarryC: on "DNA Day" 2010 (April 23), I got the complete service for $99. I don't how the new pricing will affect their offers, but they always have a big annual deal.
posted by cgk at 2:39 PM on June 23, 2012

I got it for $76 plus the monthly subscription, but they don't do the subscriptions anymore. I wonder if they will do any big sales again. My total cost including the subscription is less than $200 so it's still a substantial discount over their current fees.
posted by litlnemo at 11:53 PM on June 23, 2012

I work in genomics and I got the 23andMe analysis during a sale for $9*12 months, which I think is a great deal. I am both more cynical (honestly, not that much of our health status can be directly attributed to genotype at this point) and more interested (in the raw data, which includes my haplotype information at 966983 positions, much more than the couple hundred studies that have results reported in the scientific literature) than the typical consumer.
I find their interface to be a great platform for any level of interest--they do a good job of explaining the actual predictive power of what is known in lay terms, always link out to the original research, and even perform their own surveys that they can then correlate with the large database they have. One thing I really appreciated though it wasn't clear at sign-up, which someone alluded to above, is that for some of the least desirable disease risks, for which there are fairly predictive markers (I remember Alzheimer's, Parkinson's, and breast cancer BRCA being in this category, though there may have been others) you had to click through a lot of preliminary information explaining the studies that went into these marker/disease correlations, and what the predictive power of these studies is before those results are shown in your general results section. Alzheimer's runs on one side of my family and besides the initial price hesitation I also hesitated because I wasn't sure I wanted to find out that particular disease risk. It turns out I did want to know, once the results were 3 clicks away, but that wasn't what I was paying $108 for.
In summary, I consider it more of a novelty that something that would tell you too much you don't know (unless you are adopted or otherwise have very little idea of your ancestry--that part is quite accurate). I was extremely impressed with its scientific accuracy and thoroughness--the limited power of most of the disease risk prediction is limited by current research, not laziness or scaminess (which I suspected of genetic testing companies). You might find out something interesting, but most likely you'll find out a bunch of uninteresting things, like you have a .8% rather than the average .7 % risk of stomach cancer.
(oh, and rereading your question, you seem up on the predictive power regarding diseases. It did get my basics right.)
Also, I'm curious as to any posters who allude to health insurance and implications--are you aware of any direct evidence that this type of data can be used define pre-existing conditions, or are your fears based on how much the current system sucks?
posted by ...tm... at 1:01 AM on June 24, 2012 [1 favorite]

I did it several years ago, getting their $99 4/20 special. All the ancestry information matched, and it confirmed suspected susceptibility to one or two certain medical conditions. It also indicated connections to dozens of different cousins to some degree (none of whom I knew or have contacted) along with one direct cousin, an aunt's son, who was predicted to be my closest match (and whom I do know). So I didn't learn anything mind-blowing, but I'm still glad I did it. I also get occasional emails about new correlations they've identified.
posted by Mapes at 1:17 PM on June 24, 2012

cabingirl: a large part of the cost of genotyping will be the actual genotyping chip, probably a lot more than the DNA extraction and sample prep or the analysis they do on it - to get the Alzheimer's risk data, they would have to repeat your sample on the newest chips, and I'm not surprised they don't do that for free.

I got it done the last time they had a $99 sale, but again I do genomics for a living, so I had a deep nerdy interest in my own genome even though it is not that exciting, and I know enough about disease risk that I didn't think anything unpleasant in there would bother me too much. I am of fairly standard northern European ancestry, so no surprises there, and I did find a fifth or sixth cousin on a different continent but that's plausible given what I know about relatives who emigrated a while back. I didn't find anything particularly nasty in the disease risk or carrier stuff, but I suspected I wasn't going to, because anything really nasty that isn't a new mutation in me would probably have shown up somewhere in my family. I did talk to my first-degree relatives before I got it done, in case they didn't want to know about anything they were potentially carrying. Another thing is that even though the current research doesn't show anything particularly bad, that's not to say it won't turn up an association in the future - I have the SNPtips addon, and reading the latest genome association study when you can see what you're carrying is fun.

Note that you have to opt-in to see some of the larger disease risks (which I did instantly, because I couldn't have it sitting there and not know), and also to see if you have any really close relatives, I guess in case it turns up unexpected siblings.

I've also done some stuff with Promethease and browsing SNPedia, and I used a third-party program to see what mix of European populations I am, but it's not anything surprising. I'm slightly more Neanderthal than average.
posted by penguinliz at 3:43 PM on June 24, 2012 [1 favorite]

My brother and I both got this, and it got things like ancestry and eye color correct. We also shared our information and we are extremely similar genetically, which you would expect, so it's clearly not completely random. Also I believe he has slightly more Neanderthal DNA, because I'm mildly more evolved, or something like that.
posted by Comrade_robot at 1:42 AM on June 25, 2012

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