Tagged as: dna, gene, Genomics, Informatics, sequencing, Start-ups, Tech
Personal Genomics – Why 23&Me Doesn’t Work
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Interesting take — thanks for sharing this!
I would argue, though, that 23 & me has a bigger marketing problem than scientific problem. In fact, I don’t think that the typical consumer of 23 & me’s products cares at all about the nuances of the science — what the big difference is between causation and correlation, how immature the research is at this point, etc. From the average consumer perspective, the data is “good enough” (note: I don’t believe this to be true myself — I just think that the typical consumer won’t make the distinction). Especially when you see luminaries like Sergei Brin making significant life choices and investments based on these very same markers (http://www.wired.com/magazine/2010/06/ff_sergeys_search/all/1), I think the science issue is relatively less important.
Put another way, my guess is that very few people see the service, get interested, and then say “wait, I’m not going to spend $5/month — the science is bad.” Rather, I think that there are not enough people getting to that purchase point to begin with – and that’s a market-size / marketing problem.
If I were 23 & me, I would change up my marketing — focusing on the heritage and ancestry issues more than the disease markers.
I actually believe that most who go to 23 7 Me do it for exactly the last reason you mentioned above – Ancestry issues and heritage. The more people involved in any genome project for any reason the better.
This company will be successful for one reason: Curiosity.
People like to know their ancestry, etc.. But this technology, although in it’s infancy, gives them a peek into the unknown. AND, it’s only a hundred bucks.. Accurate or not, it’s like astrology..
Just saying…
Thanks for the information. I am not a scientist. Not even close. After listening to a radio ad, I was interested in 23 & Me. Kind of compelling. At least the way its advertised. Besides, I’ve spent 100 bucks on worse things. But after reading your piece. Nah. I’ll save my money.
Thanks.
You briefly mentioned insurance. If 23 & Me and the like, are as important as the sellers would have us believe, is the test covered by insurance? If not, why not?, too new, not really conclusive to predict, diagnose or treat disease? Wouldn’t they have a vested interest in that? Besides, who wants to find out their related to Justin Bieber, Miley Cyrus, Flava Flave or OMG, Al Sharpton, or worse!
So I am thinking about this – because I have Hashimoto’s and my mother died from something (ending in kidney failure) when I was young. If there was a greater chance of me having something else related to this (I have other symptoms), I would ask my doctor to test me for this. I also have two children who may have inherited whatever this crap is. Still thinking…
just looked at my cousins profile it said .03 chanceof native american ral accurate great grandma was 100% native american
jack lawson: maybe great grandma was 100% native America; maybe she wasn’t.
But one thing I do know 100%: there has been inter-breeding between native Americans and Europeans since virtually the day the Europeans arrived 500+ years ago…
Native Americas have also been taking European women prisoner and integrating them into their tribes since the beginning as well. Well known examples such as Cynthia Ann Parker, mother of the great Quanah Parker abound. If your grandfather was Quanah Parker, your great grandmother would be 100% (or close) European.
Further, it is rather difficult to trace native America genealogy since there are virtually no written records. Oral traditions, yes, but anyone who has ever played “telephone” knows that is hardly reliable.
My husband and I ordered our kits after he was diagnosed with a incurable disease, out of curiosity. The blessing in disguise came after one of my close relatives contacted me, he was adopted and was hoping we could help him find his father. We did. They have been reunited and very close now. It was a God Send. As far as the medical conditions, etc., it is fun reading. But in no way should this replace seeing your own doctor, as 23andme states.
Cindy – thank you for the comment. For your close relative – did he find his father through 23andme? I’m super curious about those events. For your husband – I hope that you two are doing OK – did 23andme’s kit help you in any way? I wrote the post almost 4 years ago now, and while things have changed regarding genomics, I’d have to weigh in that the more we find, the less we know. That’s not a bad thing, per se, but we’ve got a long way to go until we have enough data to drive genomic discoveries. It’s an exciting time, though.
This is a misleading article and demonstrates how far behind the author is in genomics and genetics. 23 and me uses the same state of the art technology and base risk guides published in the scientific peer reviewed literature. No other medical genetics testing facility performs testing differently. Not only is the FDA wrong but the review of the genetic risk issue is totally misrepresented by the blog author
Wow, strong words John. Clearly, SNP profiling really is cutting edge in the era of whole genome sequencing. When you start using 23andme for diagnostics, you let me know. That said, we are in an era when we should own our data and sequence, so I applaud them there. I have said that I think 23andme is doing a great job engaging and driving mainstream acceptance of genetic testing. http://www.medicinethink.com/23andme-genetic-testing-consumer-engagement/
I did the test because I wanted to know my Alzheimer ‘s Disease risk. Both parents were diagnosed on autopsy. In addition to that, I found out I had 2 positive markers out of 4 markers for Chronic Leukemia. Since my Mom had two first cousins with this disease I felt this was important. I shared the results with my Doc and he felt that it was important enough to enter those results into my electronic medical record.
So now it’s 2014. Is it still too early for this to be accurate?
We ordered the test and haven`t sent it in yet…Just for the ancestry part though.We watch Mr. Gates and his looking for the celebrities ancestry and have been hooked on this stuff,The wife has been digging in her ancestry for 30 years and this might be the step she,s been needing to get her to that area that will open that door for her.She`s gotten back to the 1700`s,but there`s a few areas that need brightening up…..We`ll post later to update on whether this site helps or it turns out to be just another hole to throw money in(like our boat was).
I took the 23&Me test to find out more my fuller Ethnic,and Genetic Heritage,friends.For the genetic risks for diseases,23&Me always says that the incidence of a disease also depends on other factors besides just certain Genetic tendencies for certain diseases,friends.These other factors are what types of food you may consume,maintaining a healthy weight,and sufficient exercise.So with me,the Ethnic Heritage findings are the most interesting,and important ones to me,friends.Danke schoen,meinen Freuden,and God bless you,your dear pets,and kindly keep everyone well & safe.
If you are adopted 23 & me will give an idea of who you are and ancestry is so important to a sense of self. Only then will you really know where you come from.
Ironic that that company 23&me is still around but the other company you mention is no longer in business.
1. I took the test for a couple reasons- my father was adopted, as was his mother. I would like to know my heritage.
2. My mother died of an autosomal dominant very aggressive thyroid cancer- Anaplastic medullary thyroid cancer. I have a 50% chance of having this gene. If I have it my daughters could have it. I have since found out that this gene expresses 100% penetrance. In simple terms- those who have it ALL WILL get the cancer and most likely be diagnosed after it has spread and no longer curable. Knowing if you have this gene they now recommend taking the thyroid out before age 7 as cases have been reported that young. Killed my mom in 3 weeks- that is how fast and deadly it is. A study followed many patients of all ages who got a prophylactic thyroidectomy and nearly every single one had cancer already in it but undetected prior. ONE STINKING ROGUE GENE!
Even though you can’t get the information about medical here in USA at this time, you can have it interpreted and that information is still available in other countries like the UK. A friend in Wales with a rare clotting disorder just found she has one copy of Factor V Leiden (which is HUGE considering her health history and also indicates her children could be affected. She had gone to top docs in the UK for 20+ years and never knew this.
You see there are SEVERAL genes that by themselves are known to cause serious illness, cancer and lead to death. Not every genetic mutation is inherited, and not all problems are caused by a group of genes- sometimes one IS all it takes! Educate yourself please. Yes, there are some diseases where more than one gene is involved and also other factors contribute to this expression but it seems apparent that you don’t have the slightest idea about epigenetics.
BTW If someone came into my medical practice saying they had one or two copies of Factor V Leiden, BRCA, RET, PTEN or other genes from one of these home test kits you can be sure that this would indeed change treatments, screenings, etc.
A new kid on the block- Color Genomics is testing strictly for 20 genes known to cause cancer. For $250! I had some of those run by a geneticist at a very respectable teaching hospital to the tune of several thousand dollars. This alone has the potential to save countless lives.
Get with the times, Miller. All it takes is ONE. $99 is worth potentially saving a life now, isn’t it?
As a physician, I have advised patients to undergo 23 and Me testing. The results can be interpreted using GeneticGenie.com for metabolic genetics or Promethease.com for everything else. Genetics and environment nearly always come into play for actual disease expression, and the key is that environment and behavior can be modified to hopefully reduce disease risk; genetics cannot be modified, but the knowledge of one’s genetic risk can make a huge difference in disease diagnosis, prevention, or treatment for many conditions.
Would anyone suggest doing 23 & me before having children? I had thyroid cancer at 16, and although I know it’s not hereditary I’m concerned about what by husband and my genes could come up with.
I was given this test as a birthday gift I just now got the results and they are truly laughable. Nothing matches, and I know no more now than before I got these results. Furthermore, every person on here says it cost 99 dollars, it is 99 dollars at ancestry.com. Why was my friend charged 200.00??? What a stinkin’ rip off. If this matter is not made right, I will do everything in my power to bring them to justice
I received my kit as a gift approximately two years ago. I found the information interesting concernig my heritage. At the time my kit was bought it cost $99. In or around November 2015, 23 & me said they were now licensed and could release my health reports. I was told that I was a cystic fibrosis carrier! I asked my daughter to mention this to her doctor at an upcoming appointment. Her doctor recomended that she be tested and she ran the results , my daughter is also a carrier and is of child bearing age. I shared this with my sibilings, two of which have been tested, one is also a carrier and one is not. The kit now cost $200 but I believe it is money well spent so that our children have this very important information.
I decided to buy the kit purely out of ancestry reasons. Although, they do state they can indicate what illness you are more prone too. They state quite clearly that it is a guide and NOT a diagnose of any disease/illness.
can you make payments my husband is part American indian can your test show how much so and what tribe you are from his father is supposed to show percentage buy Cherokee but his grandmother was adoped and from another tribe she was not allowed to know any informayion she was to pass for white so has no information on her indian profile what can you provide please call us at 760 242 0861 thanks steven and mary rainwater??? please provide what your company provide please call us at California time after 1200 pm7602420861 email mercorp@msn.com would like to talk to a live person thank you
I was wondering if 23 & me or any other genetic testing company includes testing for Neanderthal markers?
I did the Health/Ancestry test, which I ordered from 23&Me. Both were wrong. None of their predictors for what I have or don’t have proved to be accurate (for instance, said, they said no kidney stones. I’ve had 45. They said no RA. I have RA. They predict no AS. Big surprise, I have AS. They said no gout. I’ve had it 3x. They predicted straight hair. I have curely. They predicted red hair. I have blonde, and so on down the list). Their predictions on ancestry also proved to be incorrect. For instance, they said I had Native American ancestry but no Jewish ancestry. Actually, I have no Native American ancestry while I do have both Sephardic and Ashkenazi on two sides. They predicted no German ancestry (three lines have been in Germany for over 500 years) but that I had French ancestors (nope, not a one). However, Family Tree DNA and Ancestry.Com proved to pretty accurate. But, in case anyone is interested, 23&Me does list Neanderthal. My advise for what it’s worth, avoid 23&Me.
I received my report from 23 and Me and am Very Disappointed. It told me Nothing that I didn’t already know. I certainly know that I do not have a unibrow and that I can taste asparagus. My mom is an off the boat immigrant and my dad is a first generation American. I know where they came from. There was no additional information there. Of all the possible genetic markers, they were all marked “no problem here.” Not that I want a problem. Anyway, Goodbye $200. There were no genetic indicators that I am a person who would waste my money on 23 and Me!
My daughters gave me this for Christmas. I wish they had their money back. I tried to register and got as far as confirming my e-mail and it would not accept it. I tried for help and didn’t get any.
I bought the test for myself and my wife for $180 each for the ancestry and genetic information. I ran the results through Prometheus.com. It correctly identified a number of relatives and identified over 1200 distant relatives that had also taken the test. The medical data from the Prometheus analysis identified a number of genetic risks, many of the risks have either manifested themselves in my close relatives, including Rheumatoid Arthritis, Aneurysms, Heart Disease and a number of others. It also explained why I have difficulties taking some drugs, as I am a poor metabolizer of CYP2C9. Well worth the money, but read it carefully and completely and bring up any concerns to your doctor.
I sent money and blood for additional test of how long I will live and never got an answer. send back the report or send back the money Pat Hamill RN
The genome has a tremendous amount of mapping and research yet to do. Our politicians bragged that the genome had been mapped, what they did not tell you, is that it is still a rather elementary map, with a lot of theory and conjecture, being passed of as fact. Please, don’t believe everything someone tells you, just because they seem highly educated.
In the year 2009 the GOP wasn’t considering having the insured do a DNA test for in my opinion nefarious reasons. Such is our world eight years after this article. What else has changed? These little worthless companies have become rich. Millions of people think they are finding their relatives and indeed DNA is now used to allow adoptees to find their families and mastectomies are being performed based on DNA only. As far as most companies being legit, they seem to be but there is an element of ‘too big for their britches.’ Many genealogists are working feverishly and most are very helpful to encourage and aid the uninformed. The more dna’s matched the more to track and build the ultimate tree.
What are the advances made with the 23 & me testing, since your 2009 post?
My Dr. suggested I try this as a way to screen for certain conditions.
I am always curious how people who follow healthy lifestyles, and regularly see their drs, end up with stage 4 lung cancer, or such?
After conversation at dinner with a very satisfied user of “23&me” i paid my restaurant bill with my Discover Card, without any card problem, and approximately one hour later after Googling “23&me”, for their on line supplied info, and noting their $50.00 “Black Friday” offered discount in cost, I decided to buy their more expensive package.
I then spent about an hour with their irritating sign up protocol which claimed that the Discover Card #, just previously used succesfully by me, was now wrong.
Further, “23&me” requested billing information, i assume as to who paid my credit card bill, wanting a first & last name amongst other things. Well, my bank pays my Discover Card bill and i don’t
have the foggiest notion as to which person in a huge bank does the transaction.
I supplied my banks address but also have no idea as to whether the banks credit card bill playing office is in that same office, nor do i care.
I have no idea as to whether my “23&me” purchase attempt went through or not.
However, i do know that by that point I found myself not only irked at “23&me” for quite seemingly, in no way facilitating my giving them my money for what i accept as possibly being a lot of hype, but also realized that my paronia had been raised to a point wherein i was wondering as to whether this just might be a “23&me” try to save a few bucks by stalling the few hours remaining, of their “Black Friday” discount offer before allowing for my purchase request for their alledged service to go thru???
Now I will check out “Navigenics” which until a few minutes ago I had never heard of before and have no prior affiliation with.
I was fairly happy with 23&me until it told me that my uncle is my half brother, and my son, who is his great nephew is, according to 23&me his first cousin.
This is not possible. What do I make of this now!
Listed an anonymous Grandson. I have 4 boys and 2 girls. I have sent messages in hopes that he will respond. He is in a “group” thing where he may not be getting messages. What a surprise.
I don’t care who had what in diseases, I just want the heritage.
i sent my dna to 23 and me and i never heard any thhing
several weeks ago
all this DNA kits from different sites are just BS
buy 3 kits from different sites like 23&me and you will get 3 different results to point of getting people angry and feeling they got scammed.
Understand everyone, 23&me and Ancestry, match up DNA centimorgans, fragments and percentages. Someone who comes up as a first cousin, usually sharing approximately 12 percent with you, maybe a half sibling of a parent. I have proof of it on my maternal and paternal sides. Both had half siblings.
Also, I found my father’s biological father’s family. Imagine finding a photo that is the spitting image of your Dad, who was an illegitimate child. When I first took the Ancestry test, someone appeared as my first cousin, first on my match list. He was not any of my first cousins I have known all my life. I decided to investigate and someone had just posted photos in Ancestry, which included one photo, who looked so much like my Dad that my mother thought it was my Dad. I showed the photo to my mother and she said: “I don’t understand, I don’t know who those other people are, but that is your Daddy”. I said “no, its not my Dad, its my Grand Dad”. And sure enough, my brother took the 23&me DNA test and my brother’s Y-chromosome Paternal line matches up with this family. It doesn’t get any better than this story.
Also, I have two cousins, who I was able to match them up with their biological families. One was 75 years old, who just met his 5 half siblings this year. He lived about 2 hours away from 1 of his brothers. The other was 66 year old who got to see a photo of her biological mother for the first time in her life, and now she knows more about her story.
OMG where to begin on how bad 23&me is . . .
#1 I could not download my data file unless I used Google browser. Had no idea the founder of 23 & me was married to a Google founder. I have a creepy feeling that this is the way Google is collecting our data from this site via their browser. I had Firefox uptodate with Win 10 and that would not work.
#2. Their customer service is out of the Philippines and these folks know very little. They could not help with simple down load issue which is pretty basic. Get escalated to Mt View and they really are quite snarky.
#3 Google owns part of this privately held company so the accountability is nil.
#4 I had recent cancer scare and found out the doctors won’t use 23&me data at all because it doesn’t actually bother to look for all variants of the genes. So when it says you have no braca genes that is not something you should rely on.
#5 Also their whole paint thing is just almost laughable it is so wrong. Mine showed my major ethnicity only entered my dna around 1870 was the earliest when in fact I have done some serious genealogy and it goes back to 180AD and that is only based on one grandparent. It is so bad it should be a bait and switch. I would love to prove in court how sleazy this company is. Looking for an attorney.
#6 What I never read about is how they manipulate folks from day one when you sign up. I thought they were legit about contributing to science and I foolishly answered a ton of their questions while I waited for my results. The wait takes weeks so during this time they keep asking you to answer more and more questions. I think they are in a rush for this since once you get the data you won’t bother and you will realize once you look at the data it is so bad. I kept answering the questions to help science not Google until I came to questions that were clearly marketing ones, like income for instance and then I realized all this data I gave them was going to be abused or used not for medical research but for marketing. That was clearly a bait and switch.
#7 When you ask them to remove your questions they say no too late. They give no reason just that you agreed to it. I didn’t agree to marketing questions and for my answers to be used for marketing purposes. I really regret giving them my dna info and answering their questions. The results are very flaky and this reminds me of that Elizabeth Holmes who faked the results. Same is true here.
I had no idea that Google was involved which I avoid as much as possible. I had no idea the founders were previously married and this was not disclosed at the time and I had to search for this. I assumed there was better privacy controls in place with all this but there isn’t. Here is another reason these companies need to have real and effective regulations and monitoring. They get away with murder and they are now so smug about it all. So sick of these people and companies. When my husband retires I think we will unplug completely since we are so sick of how the internet has been abused by some of these companies. Go back to regular cell phones and ditch the smart. So much manipulation when they say smart phones. No you are not smart to have a phone that tracks your every move and tracks you and all your friends and every word you type or say. Really creepy. Google is evil and has done plenty of evil and that is why I use Duck Duck Go and other things. I think if more people understood 23&me is partially owned by Google they would avoid them completely. Any lawyer willing to help me get my questions off their server would be greatly appreciated. I would love to prove how bad their ancestry thing is since I have Icelandic background and the documentation is really good for going back many centuries. I would love to prove how bad their data is and take the vail of B.S. this companies gives folks.
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