For those who are concerned about privacy, you could request that they delete your information after you have received the product. It says in their refund policy:
You can, however, request deletion of your genetic data by providing us with written notice to [email protected]. We will delete your genetic data from our records within 30 days of receipt of such notice.
Yes you can download it and then you can use a tool like Promethease to link provide a report on how your SNPs match up with various research on SNPedia. It's a bit rough but it certainly has lots more info than the reports from 23andme.
This is true. If you want your data completely erased from their system, then neither you or 23&me will have access to that data any longer. Your data is presented to you online only. While they have your data, your data might be sent to third parties but not at the individual level unless you give them consent.
You have to go to the front page (https://www.23andme.com/). From there, you can still see the deal. When you click "Buy" your cart has the $499 price, with a $400 discount.
Yea, that's great. I just saw that in the info email they sent me. It was worth taking a chance at this price even before knowing.
Also nice is with the complete package you can download your data. Maybe not useful to a lot of people, but I build genetic analysis software for a living (mostly focused on academic research - goldenhelix.com), so it will be quite fun to pull in my data and play around with it.
I Just bought six of these. I'm stoked - this is precisely what I've been waiting for for my family. I actually discovered I was lactose intolerant (after 30+ years) through 23andme - somehow that little detail got by me... :-)
So you discovered you were lactose intolerant after 30 years, and throughout those years, you've presumably been drinking milk. Don't you think you would've been just as fine growing old without knowing you couldn't break down lactose?
Lactose intolerance is not life threatening but knowing you have it can really increase your quality of life.
It manifests itself as feeling bloated, having bad gas, and diarrhea. People who don't know they have it often assume that having the farts and feeling gross all the time is just a normal state of being. Women who have it often guess that it related to PMS. (My girlfriend was diagnosed with lactose intolerance in her late 20s)
When they figure out it's the milk and cheese and avoiding it makes the lower GI stuff goes away it can really make them much happier.
Heh - you clearly _aren't_ lactose intolerant. Through the simple (and relatively inexpensive) act of popping a lactase tablet before anything with milk, my life got a _whole_ lot better. It's embarrassing how much better things are. When I first got the results, I was like "Woah - 23andMe is broken - _I'm_ not Lactose intolerant" - that's what happens when you live with something your entire life - you baseline off a miserable experience and believe it to be the best you can do.
Heh. It's actually pretty easy to identify the people who aren't lactose intolerant by their comments.
Trust me, there are three wonder drugs on this planet in my experience - these aren't like "Aspirin" or "Tylenol" in which placebo effect might be possible, these are drugs where there are almost instant and _very_ physical changes:
o Tums - when I have a really acid stomach. Typically within 90-120 seconds my stomach clears up.
o Amodium - If you ever have the runs (though, you then have this freaky experience of not having a bowel movement for 48-72 hours). Use with extreme caution. I've taken a total of three in my life.
o Lactase - Which basically eliminates an entire suite of issues associated with the inability to digest lactose. In fact, the first few times I used them with a milkshake, the impact was so great, I was a little nervous until I did some reading and discovered the underlying mechanisms (basically breaking Lactose down to Galactose + Glucose) - Changed my life.
I think you mean to say that you discovered that you have an increased chance of being lactose intolerant through 23andme, they do not tell you that you are lactose intolerant. It may have been something that you found external confirmation for, but 23andme deals in probabilities, as far as I understand the process.
Well, yes and no. Most things that 23andme deals with is probability, but there are some genetic markers that specify _traits_ instead of "probability" - these are things like EarWax (Wet/Dry), EyeColor, Bitter Taste Perception. There are, in fact, 10 "Traits" that 23andMe will test you for - And Lactose Intolerance is one of those Traits.
To be precise, their report said:
"Likely to be lactose intolerant due to lack of the lactase enzyme as an adult. Unable to drink more than a glass of milk a day due to lower adult lactase enzyme levels. (May still be lactose tolerant for environmental reasons.)"
This is a great deal, although I'm torn. We are about to add a new member to our family, so this would make an awesome 0th birthday gift, but the prospects of knowing all the health information up front is rather scary (and who knows who might be able to access it in the future - it needs some sort of secure swiss bank setup).
If you're gonna be paranoid about Gattaca you need to go all the way. DNA sequencing is going to be so cheap that it will be more cost-effective to sequence your ambient DNA from an elevator button or a used tissue than to look up your obsolete sequence data from some old 20th-century corporate database.
The problem of misuse of DNA sequence information may be very real, but whether or not you do business with 23andme is probably an insignificant blip. We need legal safeguards, not minor-league personal boycotts.
False. Unless they are taking my order over the phone which I block through caller id and take my payment in CASH and send my results to a random drop location, it is not anonymous at all.
You can be buying the kit as a gift, and the person ending up using the kit can specify whatever name when "claiming" the kit on their website. There are no requirements for this name to be authentic and valid.
What happens when John Doe becomes the suspect in a murder? ;)
EDIT: In all seriousness, as this technology becomes cheaper and more advanced/insightful, I can imagine a future where these tests are required by the government in the name of cost efficiency. Then it will become a matter of trusting the government to guard and use our information responsibly...
In case it wasn't, the answer is 'yes', but I'd be somewhat surprised to learn that the recipient went through the trouble of retrieving my DNA from it, stores it in a database and sells the contents of that database, along with any personal information that I have voluntarily shared with them.
Of course the next step would be to create clones or use their genes in breeding programs. Hard to see exactly where the monetisation would come from. Probably evil as guess.
I'm really not sure on how to make this even more clear, but your DNA is your identity, so when you give it to someone they have your identity and no amount of anonymization is going to change that.
All you're missing is the metadata of 'name, date of birth, social security number' and so on. But that's just a system we've placed on top of 'who you are', which is your genes.
Your fingerprint, your retina scan, your full lifes history, nothing in that list will identify you as good as your DNA does.
So once you have someones DNA you can reconnect it with the rest of the information at any point in the future by simply checking to see where that DNA turns up again, including fractions of it in your descendants.
So if you and your identical twin brother or sister are both going to apply to 23andme for an analysis you should get back the same results, and if your identical twin brother or sister commits a murder and hightails it to zanzibar you are in a lot of trouble if their dna is found at the crimescene and you happened to be in the neighbourhood.
The number of identical twins is low enough that for the larger part of this discussion you can leave them out of the equation, they're the exception that confirms the rule, the differences in DNA are very subtle, and afaik will not be readily detected in a normal analysis.
I think you misread the point GP is making he is suggesting that because identical twins have the same DNA (more so than other people says the article linked) according to my logic they must be the same person, whereas it is obvious they are not.
Of course they are not, but for 99.6% of humanity the rule that your DNA is (very) unique holds true, and for identical twins even if their DNA is even more similar it is not 100% the same.
Clones (which do not exist (yet, or at least, human clones)) are the other exception.
I think they are referring to epigenetic changes (silencing/methylation). At the genetic level, they should have identical DNA if they arose firm the same egg/sperm combo.
Well, today they're 23andme, arguably in fairly rough waters (which is probably the reason for this promotion in the first place).
Tomorrow they could be sold to the highest bidder, who might not feel they were bound to the terms of service of their predecessor. It could be an insurance company, for instance. And based on your name, your genetic data and a whole bunch of other factors they might decide to deny you or one of your descendants coverage.
That's just one scenario, I'm sure there are plenty of others with various degrees of chance of becoming reality.
For an insurer to deny coverage based on genetic information has been against the law in the US for almost 2 years http://www.genome.gov/10002077.
Also, there are health benefits to sharing your genetic information and comparing it with others since the extent of genetic variation within the general population is not currently well understood becuase of limited data. Over time it is also likely that knowledge of your genetic information will become directly more relevant to your health, though, this is not currently the case. I agree that some form anonymizing procedure should be in place.
"You should be careful about sharing your genetic information with others. Currently, very few businesses or insurance companies request genetic information, but this could change in the future. While the Genetic Information Nondiscrimination Act was signed into law in the United States in 2008, the protection it will provide against discrimination by employers and health insurance companies for employment and coverage issues has not been clearly established."
So it's a law but there has not been any test of this. Let's hope the law holds up.
The way you prove any corporate crime. Evidence would have to be obtained that the insurer acquired genetic information and then terminated coverage for individuals it perceived as high risk. This would likely involve many people from within the company. You would have to count on one of them to provide the evidence.
Part of me thinks the nature of the information would open a raft of legal trouble if they were to use it contrary to the initial terms of service.
Also, while your name may be on the credit card used to pay for the test, and even on the test package with the saliva, since this is being done via the mail there is no way to prove it's really your DNA.
Were an insurance company to deny you based on this you could claim that you just put your name on it for convenience sake, but it really was for a friend who was concerned about using their real name because of possible abuse of DNA information.
Wouldn't they be tied to the agreement that you had when you signed up for the data? I always thought that you'd have to agree with new "terms-of-use" whenever they change
Just to give you an example, I just bought at an auction the complete contents of a defunct company. Amongst the stuff I got was their servers and their bookkeeping. I never entered in to any agreement with the people whose data is stored on those servers, and yet I have all of it.
A 'survival clause' that would guarantee destruction of your data in case the company goes out of business would be a minimum here.
But instead, 23andme says in their privacy policy:
"We may use Genetic and Phenotypic Information to conduct 23andMe-authorized scientific research and development. Any Phenotypic Information you provide is done on a voluntary basis. We may provide third party organizations access to this information for scientific research, but without your name or any other Account Information."
And that's the kicker, so your full genome gets sold to some 3rd party (you don't even get to know who) and all they do is strip off the 'meta data' regarding your person.
And AOL and NETFLIX have already shown that anonymization of data is a myth.
Looks like they do have a 'survival clause' in their privacy statment:
Business Transitions
In the event that 23andMe goes through a business transition such as a merger, acquisition by another company, or sale of all or a portion of its assets, your personal information and non-personal information will likely be among the assets transferred. You will be notified in advance via email and prominent notice on our website of any such change in ownership or control of your personal information. We will require an acquiring company or merger agreement to uphold the material terms of this privacy statement, including honoring requests for account deletion.
The potential upside of this type of research is worth the risk of loss of anonymity. I would post my genome to a public website if it would help advance medical science.
[Disclosure: I participated in public health genomics research in grad school.]
I agree with your sentiment in general, not your specific arguments though. First, they're only talking about research, not about selling data. Secondly, I don't think your comparison to AOL and Netflix is valid. AOL users were identifiable by googling their own name etc. How is one supposed to identify you when all there is is your DNA and nothing else, which has never been saved anywhere else at all?
Your DNA is half your parents', and your childrens DNA is half yours. Given a sufficiently large number of datapoints you can work out the DNA of those in between. And given a few 'confirmed' identities you could use that more complete picture to work out the identities of the rest, even if you did not know their names.
Your DNA is your identity. It just hasn't been tied to the meta data of your name, address and social security number, but again, with a bunch of confirmed identities of relatives that is a job that is probably doable.
In a far off future, where enough DNA data is publicly (!) available, that may be the case. Until then, to which data set should any company compare my DNA to find out who I am?
23andme is collecting data at a fair rate, there are other companies like them. Pooling the data between all those companies is going to allow you to fill in a bunch of 'blanks'. At some point that will reach critical mass and you can map the remainder.
I'm not good enough at math to give you the percentage of a certain population in order to be able to infer the rest, maybe someone else here can do that.
But given a population size 'n' if you get a random distribution of individuals and you know their genes and you know have a graph of relationships (say through facebook or some other means of tracing links between people) you should be able to make a formula that tells you what kind of 'coverage' you can expect based on how large a sample.
I'd argue that this is what makes 23andme interesting. Without that capability, it's a toy for rich people.
First of all, today, this is not full genome information, just your genotype. Second, if we want good molecular medicine, information like this is essential (some might argue the only way) to get good sampling and do the appropriate research.
Addendum since I can't reply to the comment. They don't quite have the technology on hand today to do full genome analysis today. I am not sure there is enough material to do whole genome sequencing with current technology (I could be wrong).
First, to clear up some misunderstandings, your genome is your genotype. They mean the same thing. Also, what 23andme is offering isn't a complete sequence of your genetic code (at least not for $100). The current estimated price is for a complete sequence is about $10,000 to $100,000 (it's come down a lot recently, but it is still beyond the finances of most people). What they are actually doing is mapping certain known locations in the human genome, known as SNPs (single-nucleotide polymorphisms), and seeing what variation you have there. Some diseases are due to a changes in a single gene (for example cystic fibrosis is due to a mutation in a membrane channel), so one SNP they map is the location of the typical mutations in this gene. Other diseases have high correlations to certain combinations of nearby SNPs, and so these can be predictive. It is basically like a world map where the genetic code is on the level of city blocks, but all you have on your map is the location of random streets around the world.
Yes, you're right, sorry about the confusion. The point I was trying to make was they give you the 'limited' version, but you give them everything. They may not sequence it all today but they could do so in the future (I'm assuming they keep copies), and they could sell your samples to parties that can sequence it all (today or in the future).
From their privacy policy (https://www.23andme.com/legal/privacy/) it seems they destroy the sample after generating the SNP map (Personal Info section, Genetic Info subsection paragraph 1).
You're right. I missed that, they contract out the sequencing though.
You seem to be pretty knowledgeable here, how much information is still present in those SNP maps (in terms of bits per person)? Would an SNP map still uniquely identify an individual ?
It depends on how many SNPs (read as 'snip') they map and how much variation is at each site. It basically boils down to a combinatorial counting problem, although there is the complication that variation across close SNPs might not be independent (especially if they are on the same gene, or are related in some phenotypic way).
This is also the basis for DNA forensics/paternity tests. If you sample enough SNP locations you should theoretically have a unique signature (this is where you get the courtroom statistic of 1 in 3 million)
A bit after the fact, but apparently they have the option to 'biobank' your saliva, which means they store it for the longer term. It would be interesting to know how many people use that option.
Remember that one of the key investors is Sergey Brin, so "Don't be evil" would apply to 23andMe. Sergey is married to the co-founder of 23andMe, Anne Wojcicki.
"Don't be evil" is at this point no more than a marketing slogan and I really don't see how it would apply to 23andme.
Read their privacy policy first, then decide if you think that 23andme does not explicitly hold open the door to do 'evil'.
edit: afterthought, in fact, any company associated with Google in that way would probably be the last party to give even more private information to, they have enough, if not too much, already.
Out of honest curiosity, is it a matter of principle for you, or do you really feel harmed by anything companies have done with your private data? Is it a worry about future harm?
It's mostly about potential, not about stuff done to me.
The EU now requires fingerprints to be given with your passport application, and the Netherlands, the country where I live has added a little goodie, they're going to keep one nice big fat file with all the prints in them, in case your future self commits some crime (of course, ostensibly that's not what it is for, it is to prevent the (scary sounds) terrorists from getting passports).
Stuff like this tends to end bad, and the easiest way to avoid bad endings is to be very careful at the beginning.
I can imagine all kinds of ways in which data like this could be misused, every year there are huge breaches of the public trust with sensitive data, be it credit cards, social security numbers, 'anonymized' releases, rogue employees and so on.
It's only a matter of time before some big time problem will arise out of a DNA database and I think to caution people to not send out their data without due consideration of the possible consequences is irresponsible. What surprises me most is how the hacker community seems to be fairly gung ho about this, and rushes to take advantage of this 'bargain'.
I'm considering not renewing my passport simply because I don't want to be a 'potential suspect' in every future crime on european soil. Of course, that will make me even more of a suspect for every past crime but that's just too bad.
Sending my DNA off to some commercial third party for 'analysis' and resale (at least they're nice about that bit, they mention it in their policy) is one of the last things I would do.
Unfortunately this isn't a paranoid position anymore.
Even if 23andme.com are responsible and take every precaution with your data, they'd still be subject to subpoenas and I sure as hell don't trust the federal government to respect data privacy when not convenient.
Thanks for taking the fun out of this Jacques... :\
Exact same thing happened to me. Disappointing, to say the least, especially since I couldn't find any info on the site that said that was the ending time.
Email them graciously, tell them you think they have a lovely service and that the deal is a steal, tell them you lost it right at checkout, and ask if they can take care of you. I'd bet they will, they seem like they're run by nice and smart people.
I sure hope so, because that's exactly what I did. I got an automated response that they have a massive backlog of support requests (suprise!) And it'll be 3 or so business days, so we'll see...
The 499$ version was at 99$ maybe ten minutes ago. I can't tell if it just expired or got changed. It said this was "today only for DNA day", which is Friday, so at least on the East Coast it should still run. Maybe they ran out of some pre-alloted quota?
Can they do that legally? It said "today only" and "limit 10 per customer", not "while supplies last". There's no accompanying legalese, so shouldn't they be legally obligated to honor their offer until 11:59PM?
Why wouldn't they be able to? A company can take down or put up any offer they want whenever they want. Once they've taken your money you've entered in to a contract with them, but before that they can do whatever they want.
Then why don't I create a ad that says: "Pre-notice of amazing sale! Order tomorrow and receive 95% off your purchase!" and then change it at 11:59PM so that it's no longer valid. My example is extreme, but shouldn't they have considered that before they posted an offer with only two qualifying statements?!
Edit: I'm certainly not a legal professional, so my opinion is not the law. On most print advertisements, I see advertisers give a disclaimer such as "We are not required to offer any mistakes in printing etc." This covers them legally since they need to advertise honestly.
My guess is, at least in most places that disclaimer isn't what covers them. The disclaimer is to discourage the people who will stand at the customer service counter arguing for 3 hours to get their 5 pounds of steak for a dollar.
I've ordered as well. Looks like they were still working with it. My argument is still interesting, although no longer valid to this particular situation. Thanks for the update.
The health department of the stae of New York considers 23andMe’s genome scan to be a medical test that must be approved by regulators and ordered by a doctor.
A competing company, Navigenics, successfully applied to have its test licensed in New York. It has essentially put aside marketing to consumers, aiming instead at doctors. It is also courting corporations that might use the test as part of their employee wellness programs.
They can't accept samples from NY, or they can't send them to NY? I got the same message for Maryland, so I just sent them to my friend's place in Virginia.
In April 2008, New York State's Department of Health sent warning letters to six online genetic testing companies, including 23andme, notifying them that they cannot offer New York state residents genetic tests without a permit nor can they offer them without authorization from a physician. (wikipedia)
I don't doubt it, but $99 << $2000. The technologies are going to continue to improve over the next few years until we all get cheap whole-genome sequencing, so just expect to re-do your analysis a few times as the cost drops and coverage improves.
Mike Cariaso, who does SNPedia (http://www.snpedia.com/index.php/SNPedia), and knows what he is talking about, says that 23andme offers the best SNP/$ ratio of the DTC providers
I'm surprised I'm the first to mention this here, am I really the only one that feels this way?
I don't want to know what diseases I could have. I'm happy living my life by the day and planning for a future that I'd love to have. I'd hate to discover I'm susceptible to x, y, and z; and that if I were to have a kid it would likely have a, b, c....
I'd rather jus live and let live. No need to worry about stuff that may not come to pass, and no need to brood about something even if it is, in the end, inevitable.
Almost nothing is inevitable, and even things that are can be planned for to optimize your situation. I suppose it depends on your personality though, how you would end up dealing with the knowledge.
The dangerous thing about these tests is that they only show if you have a marker for a particular diseases/affliction . This doesn't mean that you'll get the disease - we're still amateurs at this technology and I don't know if I want to live my life perpetually fearful of a disease that I have a marker for, but no relevant data on what the chance that I'll actually get that disease.
I think you have to take these results with a grain of salt. Its better to know ahead of time so you can begin to take steps to ensure that you dont have problems in the future. Genetic predispositions are only a factor, environment and other epigenetic factors also play a major role in determing your phenotype.
Agreed, but it's important that companies like 23andme don't market these tools as a complete tool for knowing what you'll get in the future, since there's still plenty more research to be done on many of these markers (and they're definitely not all inclusive of the diseases we face).
Human genetics research fellow here (well, it's one of my hats). For those of you who signed up for 23andMe, or who wanted to, can you explain your rationale to me?
I would've bought it for $99, but I didn't seem to have access to that deal. I hope I know sooner if it comes around again.
The reason is that I have an aunt who's really interested in genealogy. Genetically tracing her heritage back to Lucy seems like an awesome Christmas present; and quite a bit of the health-related stuff should be applicable to me too, if she shared all the data.
They're using one of the 600,000 SNP chips, it seems, so that is plenty powerful to derive ancestry information. The they explicitly say that their product should not be used for trying to divine health predictions, and for most diseases I would agree with them. My guess is that risk prediction for a substantial set of diseases probably won't be done well until 2020 or so. We've only just begun to open the spigot.
Sold. This kind of stuff fascinates me and I personally am willing to take the privacy risk if I can find out a little more about ME :) I was waiting for it to come under $99 so it's good to see it happen earlier than expected :D
Seems fairly reasonable to me. $70 for 2 priority international fedex shipments. Also I'm not sure, but shipping saliva may undergo more costs than your normal international shipments. The FAQ talks about certain customs forms that need to be filled in.
I went ahead and purchased. Been intrigued by the service for a while but found the costs prohibitive; hard to pass up an 80% discount, for me they've reduced the price down in to "impulse buy" territory.
Maybe they don't have enough genome research result data for Indian or chinese people, so it wouldn't make much sense to sell a product without being able to show results.
Does anybody how it works if you order several kits - can every test person still get their own account? Looking to share the order with friends to save shipping costs.
Yeah. We're now collecting your data (DNA) to resell it in the future. The storage and processing power are really cheap and will become even cheaper, while demand for a DNA information in digital form will rise. Add to this the launch fast and evolve mantra, plus being backed by google's money and (probably) technology and you got a very promising business.
Data is money. There is why facebook is still alive.
Send your $99 to me. I'll pick a disease at random and you likely have a better, if not, as good a chance at getting it based on how they calculate risks. Today only, I'll do it for $9.
> "What are your fees?" inquired Guyal cautiously. "I respond to three questions," stated the augur. "For twenty terces I phrase the answer in clear and actionable language; for ten I use the language of cant, which occasionally admits of ambiguity; for five, I speak a parable which you must interpret as you will; and for one terce, I babble in an unknown tongue."
http://paulstamatiou.com/review-23andme-dna-testing-for-heal...
Comments thread: http://news.ycombinator.com/item?id=1170074