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Ask HN: Is 23andMe DNA testing worth it?
See my friends getting tested and what interest me is the genetic conditions you may be more pre disposition for. But having a private company with my DNA is privacies of all privacies out the window. Is it worth? General thoughts?
- japerr 8y agoMy dr said they have 40% false positive rate. Not sure how that rate compares to other DNA tests though.
- mrtron 8y agoYour doctor is not correct.
- jstandard 8y agoCan you clarify a bit? It sounds like his doctor is quoting this study, which does indeed suggest a 40% false positive rate: https://www.nature.com/articles/gim201838 https://www.nature.com/articles/gim201838
- mmmrtl 8y agoThat 40% number is accurate but misleading. Here's an old prediction of pretty much that result that explains the issue: https://liorpachter.wordpress.com/2013/11/30/23andme-genotypes-are-all-wrong/ https://liorpachter.wordpress.com/2013/11/30/23andme-genotyp... Basically, almost all (~99.9%) of the results of tests like 23andme (SNP arrays) are correct, but because an interesting/scary variant/mutation is about as rare in the population as the test result being wrong for a given site, somewhere around half of those scary results are false positive. If 1000 people are tested for a mutation with this method, 10 will be false positive. The real frequency of mutations vary by site - some will be close to 50%, others at 10e-9, depending on how strongly that variant is selected against, so the most harmful ones are very rare. If you get a result from 23andme that your doctor thinks is worth retesting, it's probably because it's a harmful mutation, which is rare, and ergo there's a fair chance the 23andme result is wrong. So 23andme is almost always right, except when the result might affect your health in a very serious way. I should point out that for late-onset diseases like cancer, heart disease, alzheimer's, etc., there's little natural selection, so pathogenic variants are more common, making it more likely that the 23andme result is correct. It's a simple bayes rule result. It would not be hard for 23andme to give you an estimate of how likely the result is to be a false positive, but maybe there's some regulatory barrier in the way?
- jstandard 8y agoThanks, this is fascinating. How is error rate being defined in this case? I took your explanation to mean: Cancer is common, so the genetic blueprint for Cancer risk factors should also be common. We have a higher number of samples to verify against which increases the detection accuracy. For less common diseases, we have a smaller pool to verify against, so our blueprint is less accurate. Lower detection accuracy.
- rb23 8y agoNo, that's not what it is. Let me give an example: Disease X is very bad and strikes around age 30, so it has been selected against and is very rare. Only 1/10,000 people have the gene that causes it. Disease Y is bad, but it strikes when you're 70 (Alzheimer's let's say), so it is not strongly selected against and is more common, with 1/100 people having it. The technology 23andMe uses is wrong about 1/10,000 times, just randomly, by chance. This is true for every place in the genome it tests. Of 10,000 people, only 2 will test positive for disease X while 101 will test positive for disease Y. The 2 people who test positive for disease X will be the 1 person who actually has it, and 1 false positive, so 50% of the people who tested positive are actually at risk. Of the 101 people who test positive for disease Y, 100 will be at risk and 1 will be a false positive, so 99% of people who test positive are actually at risk. Incidentally, this is why testing populations at very low risk for disease is generally counterproductive. The false positive rate stays the same but as the true positive rate gets very low, one tends to cause more harm than good.
- jstandard 8y agoThanks, the overall explanation makes sense now. > The technology 23andMe uses is wrong about 1/10,000 times Is 23andMe's tech considered state-of-the-art? I'm assuming there are ways to reduce both the false positive and false negative rate and I'm curious how other labs/tech stack up against these rates.
- tschwimmer 8y ago"We tested your DNA. It came back negative"
- hacker_9 8y agoWhat privacy intrusion are you worried about exactly? I'd be more worried about how accurate the actual results are and whether that inaccuracy is worth the money.
- smilesnd 8y agoIt makes it simpler for police and three letter agencies to gain access to your dna without needing to go through proper channels. It is how that famous serial killer/rapist got caught on a 30 year old cold case. I know the response is "Well I ani't killing/raping so it doesn't matter." A lot of people have been sent to jail on false positives on dna results. It takes to much time to actually compare a large chunk of dna so they select certain parts to compare it to and if you fall into the unlucky percentage then you are screwed.
- oceanghost 8y agoYou're entirely correct about the three letter agencies. HOWEVER If any of your family members have done a test like this, the cat is already out of the bag. My parents have done genetic tests, as have several of my cousins. So in effect, my DNA is already on file.
- waserwill 8y agoWhich is silly, since comparing two individuals is very quick; when you get a hit for a subset, you can just do a one-to-one comparison to check.
- theogravity 8y agoNot really - I did both the genetic and ancestry testing. All I got out of it was that I was a significantly higher percentage of a particular ethnicity that I didn't know about, which was pretty cool. The genetic side didn't have anything meaningful (but maybe because whatever markers it tests for, I didn't have any risk factors). I also loaded the data into Prometheus, but all it gives you is academic journal articles that you'd have to sift through and do your own interpretations. They recently partnered with a genetics company to share data - at that point, I opted out of data sharing since I was unsure how my data was exactly going to be used. Also watch for discount deals - don't pay full price - you can get 30% off the kits during sales on Amazon. tl;dr: do ancestry if its on discount, unsure about genetics.
- jstarfish 8y ago> Also watch for discount deals - don't pay full price - you can get 30% off the kits during sales on Amazon. They also tend to market heavy discounts (I've seen 50% some years) during Thanksgiving/Christmas, both of which are right around the corner. The result of cheap genetic testing when family is in town must make for some awkward holiday dinner conversations...
- e1g 8y agoSimilar experience for me - I signed up for the kitchen sink and learnt nothing new. It's a cool product and cool tech, but I saw no benefits. I suppose if the reports showed _something_ unusual, it could have been worth the effort, so being disappointed is actually a good outcome.
- waserwill 8y agoSince you've done the 23&me test, if you'd like, you can submit a copy of the raw 23&me data for free analysis at places like dna.land [NOTE: These are academics which may use your data in research. They claim that they won't share any non-aggregate data without asking first, though.]
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- big_youth 8y agoI thought it was great, I found out I'm 43% native american.
- DenisM 8y agoLet me save you the trouble: Your genes indicate you’re likely predisposed to some diseases X, Y, and Z. There is no vaccine from any of these, but you can reduce likelihood of those diseases if you exercise regularly, but not too vigorously, mind your diet, reduce stress, drink rarely, and have satisfying social life. Also remember your annual medical exam, and consult a medical professional when things feel wrong. This is true for nearly any person as I understand.
- jm_l 8y agoWhat's more important for mitigating my future disease risk? Diet and exercise, or a satisfying social life? (A sample of the questions that I might be able to answer with actual specifics based on an analysis of my genes)
- DenisM 8y agoWhich tire is more important to your car? All of them need to be up to par.
- slededit 8y agoThe rear ones actually. If your rear end slides out its a lot harder to recover than front end slippage. Many people mistakenly put the best tires on the front.
- justtopost 8y agoWhile I agree, some physics-challenged lawyer set a precident in the usa sometime in the 00s. Almost all shops say they have to. However, if both are decent, its prudent on fwd cars to rotate them as they wear. The simple lesson here is buy quality tires, and replace them when they are worn, and many other issues are eliminated. For a quick explanation to those unititiated in auto physics: bald tires on front = increases understeer. Bald tires on rear = increases oversteer. Understeer = car pushes straight under braking, going wide in turn. Default setup of 99% of road cars and considered safer in general for average drivers. Oversteer = rear end of car comes around, usually resulting in a spin, spins remove all control from driver. Alert drivers in well handling cars can countersteer into the slide sometimes, this is (basically) drifting. Generally, only sports and racecars are setup this way.
- avip 8y agoWhat's "private" about your DNA? You spread it everywhere daily. Anyhow these tests are basically pseudo-science. If you like pseudo-science, like probiotics and so, go for it.
- Beefin 8y agohow is gut flora research pseudo-science?
- berbec 8y ago"this yogurt has forty bazillion active probiotics"
- RandomGuyDTB 8y agoI think that's only an exaggeration of likelyhood, not of quantity. There are forty bazillion bacteria in nearly everything we touch, if you foster the right ones you get that many good bacteria rather than mixed. Having forty bazillion probiotics isn't extreme but the human mind can't conceive of large numbers such as this so there's an indirect implication that this is indeed an extraordinary product.
- TheCycoONE 8y agoIt's not, but the probiotic yogurt industry is. A) they don't identify which bacteria is in the Yogurt. B) Lab testing has shown that yogurt is a terrible medium for supporting probiotics so most or all of them are dead by the time you eat it. C) Probiotics in foods don't typically establish themselves in your gut, it already is saturated with bacteria ideally suited to the environment. You would need frequent and high concentrations to disrupt that.
- Beefin 8y agoa. why do they need to? your gut flora derives value from variety, not always certain strains. b. that's just specific to brand, storage, distribution, etc. I can name plenty of dairy brands that are incredibly effective cultures kefir is one (yes i know its not yogurt) c. false. you dont need high concentrations you just need a "landing zone" for the good bacteria, and there are plenty of methods of clearing a landing zone and making space for the good bacteria.
- Beefin 8y agoWhat you need to do is export the file and upload it to Promethease to know all your genetic predispositions. then map your lifestyle/diet in a way that allows you to avoid any early onset. For example: APOE4 = alzheimers, BRCA = Breast cancer. there are plenty of preventative measures to avoid these terrible diseases.
- smilesnd 8y agoIs it worth it, nope. If you actually got any benefit from knowing your genetic conditions you were more pre disposition to then insurance companies would offer it to you for "free" to improve there screening process (or they could be purchasing that data from 23andme). But really knowing you are 20% more likely to get breast cancer are you going to start getting more breast exams, or just keep on living life? Plus a couple months ago HN had a link to a news article where they sent there DNA off to multiple companies that do DNA testing and had mix results across the board. Companies like 23andme are only as good as the database of DNA they have. You will always get mix results because comparing DNA falls into NP where you can not improve the time it takes to compare DNA. You will never get a full picture of you DNA from a service that only charges a few hundred bucks. It is like paying $10 a month and expecting a CDN at google scale.
- stickfigure 8y agoMy wife and I did 23andMe years ago (on the original chip). I think we paid $100 each. It came up with "not much interesting" for me but one risk factor for my wife that was significant enough to prompt a behavior change. I consider it worthwhile, even for me - "no news is good news".
- rossdavidh 8y agoI think a large part of the reason for giving money to a company like 23andMe is speculative; you are expecting that widespread genetic testing will result in us (as a society) learning a lot more useful info than we know now, and towards that end you want to see private sector companies like 23andMe succeed. If all we ever got out of it was what 23andMe (and their competitors) can give us now, it would not be worth it. But, sometimes you need some "foolish" early adopters to get the ball rolling. Plus, there is some entertainment value. If you would not find it either satisfying to know that you helped this industry get going, or interesting to know about the ancestry stuff, it will not (at this point) be worth it.
- duhi88 8y agoThat's how I felt in the beginning. However, now that they are open to selling data to drug companies...I'm not so sure my data is going to be used strictly to benefit humanity.
- _Schizotypy 8y agoAre you saying that developing novel treatments does not benefit humanity?
- sprucely 8y agoAre you saying that developing novel treatments is the sole purpose of a drug company?
- freeone3000 8y agoI can't really think another use. None of our current treatments particularly care what your genome looks like. Deciphering interactions and drug uses, and better targeting to genes, sounds exactly like the advances that would benefit from this data.
- Broken_Hippo 8y agoNo, but it is one of the purposes of a drug company. It is great when we can have more general cures and treatments for different sorts of general things, but also great when we can create novel treatments and cures for autoimmune disorders and cancers and so on.
- nonbel 8y agoNo, you have no idea what danger you are putting your family or descendants in by giving these companies a good DNA sample. On the plus side you might get told some vague "risk factors".
- random_kris 8y agowhat is this danger you speaking of
- nonbel 8y agoOff the top of my head: 1) Being arrested for real or framed crimes. In case you don't know, once someone has your sequence they can easily produce craploads of the regions checked by the police in bacteria and leave it at crime scenes. 2) Being denied certain jobs (eg GATTACA). 3) Being charged more for insurance, etc. In general you will start from a poorer negotiating position than someone who has your genetic data.
- majewsky 8y agoDownvoted because saying "you have no idea what danger you're putting yourself in" without substantiating that claim with an explanation is fearmongering.
- nonbel 8y agoStuff like this is already going on: https://www.ajc.com/news/national/can-police-legally-obtain-your-dna-from-23andme-ancestry/8eZ24WN7VisoQiHAFbcmjP/ https://www.ajc.com/news/national/can-police-legally-obtain-... Of course, people think its great when it was used to solve a murder...
- cstejerean 8y agoNot anymore. The original 23andme I definitely found useful, and they had a lot of interesting insights. But then the FDA basically shut them down and for a while the only thing they could offer was ancestry reporting, and that I really didn't care for. It seems like the FDA is slowly approving them to run more genetic tests for various conditions (last I saw it was 10), so perhaps it will increase in usefulness again. But I think it will be a while before it will get to the level of reporting you used to get at the beginning.
- cknoxrun 8y agoIt may have seemed more useful, but the SNP-effect data quality was low.
- wryun 8y agoI found out I had two (!) dangerous recessives (the sort that if you have these from both sides, your body/life is pretty messed up), neither of which I knew about from family history. Luckily, my wife has neither, but I appreciate knowing this and being able to warn my children.
- dominotw 8y agoNo its not useful. Its a fun curiosity and thats about it.
- someguyxyz 8y agoI work in clinical genomics / bioinformatics, and I think the current health-related results that companies like 23andMe offer are pretty misleading. They look only at a few specific genomic coordinates that are known to be contain pathogenic variants, but chances are if you have the associated disease you don't have a variant at one of those few select locations. Because of this, a negative test result does not mean someone isn't at risk for the condition. I think this nuance is likely lost on most customers. (There are certain diseases that are associated with just a few gain-of-function mutations at well characterized sites, these would be better candidates for testing of the sort 23andMe does - but that's not what they are offering in general.) The paradoxical nature of genetic variation, especially deleterious variation, is that most of it is very rare. Even with today's massive genome sequencing efforts it's still common to find variants that don't exist in ANY previously sequenced genome. Looking only at just a few sites will rarely get you the whole story.
- 883771773929 8y agoI'd really like to know if there's a GNU-like project for the human genome. I do understand that the 'value' in DNA testing is largely the ability to follow the social graph of inheritance along with phenotypical metadata. This is pretty much at direct odds with privacy even for the strictest of 'anonymizing' setups considering that the greatest context-dependent 'utility' such as curing a truly unpleasant genetic disease or persecuting an ostracized person or group is due to identifying and understanding highly anomalous genes, phenotypes, or linkages of interest that come down to damning specificities. There is one case I can think of that I _might_ be willing to participate in the "Human Genome Revolution", and at first thought it seems to me to be useful to both those that submit their samples and to humanity as a whole: a 'simple' counter of every allele across all DNA samples uploaded. However, I would appreciate feedback as to what are the gotchas here that will be abused, because I'm positive I have not thought such a system through at all and the Monkey's Paw [0] will grant my wish. :( It would be a project that requires three components listed in increasing importance: 1. Cheap commodity DNA sequencer that can export its data in a free format. 2. A network protocol for uploading DNA alleles to a swarm of peers that archive and distribute the total counts. 3. A probablistic anonymizing data structure that combines something like a generalized crypto accumulator[1] and a zero-knowledge negotiation process between the network and a client for incrementing the common counters above a fairly large threshold such as maybe several thousand or million submissions. Perhaps uses a modification of something like the approximate counting algorithm[2] in a game setting. [0] https://en.wikipedia.org/wiki/Monkey%27s_paw https://en.wikipedia.org/wiki/Monkey%27s_paw [1] https://en.wikipedia.org/wiki/Accumulator_(cryptography) https://en.wikipedia.org/wiki/Accumulator_(cryptography) [2] https://en.wikipedia.org/wiki/Approximate_counting_algorithm https://en.wikipedia.org/wiki/Approximate_counting_algorithm
- matt_heimer 8y agoYes, for several reasons. If you have an interest in ancestry and family trees in can be useful. I've connected with a couple relatives I didn't know I had because of it. Trying to build out a family tree was a fun exercise for me and from a cost-time ratio I've gotten more out of it than I did movie pass. Several people here seem to have been earlier adopters when they had more health related information that the FDA made them pull. They've been re-introducing some of them but for now 23andme is still a cheap way to get a useful sampling of your dna that you can run through services like https://promethease.com/ https://promethease.com/. If you get lucky (or unlucky depending on your perspective) it can make a difference in your life. It showed me that I had a slight increased risk of Celiac Disease so I had my allergy-immunologist do a blood test which came back positive. Endoscopy w/ biopsy also confirmed. I didn't have a lot of the stereotypical GI symptoms but after going Gluten free I can tell that I had other issues because of it. I doubt I would have been diagnosed correctly without my health report from them. My wife also got a lot of value from hers. On the other hand our two adult sons got a couple mins entertainment from it and moved on.
- natch 8y agoYou get information like: You have a 11% greater chance of developing disease X as compared to most people. That first line above sounds useful, right? But read on... Then you find out that most people have a 0.3% chance of getting disease X (3 tenths of 1 percent chance, for those who wonder if I've made a typo). So, instead of a 0.3% chance, you have a 0.333% chance. Big deal. The ancestry part is interesting. But if I had it to do over again, I might not do it, because by doing so I made some of my family members uncomfortable by revealing some of their private information without their consent.
- rladd 8y agoAncestry has the better chip at the moment: https://snpedia.com/index.php/Testing https://snpedia.com/index.php/Testing
- paulcole 8y agoIt's astrology for people who think they don't believe in astrology.
- nikolay 8y agoYes. Just do it when they have $99 specials (at least twice every year) and download your raw data. I don't think you can find cheaper. At the same time, I did a whole genome sequencing for less than $400, so, maybe $99 is way too much anyway.
- no_identd 8y agohttps://www.youtube.com/watch?v=HKQDSgBHPfY https://www.youtube.com/watch?v=HKQDSgBHPfY DEF CON 25 - John Sotos - Genetic Diseases to Guide Digital Hacks of the Human Genome The Chief Medical Officer of Intel says genetic testing in general seems like a terrible security risk one should avoid incurring at all cost. So that's a big fat no.
- rkagerer 8y agoI bought one of these home-DNA tests years back to give to a relative as a Christmas gift. After I read the ToS I immediately threw it out in the garbage instead. Don't remember the exact phrasing but IIRC it basically made you agree that they own your data. No thank you.
- Beefin 8y agoI'm building a tool that will help with understanding your gene mutations: Meports.com if anybody is interested.