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Be Careful about 23andMe’s Health Test
- kenjackson 8y agoWhy doesn’t 23 and Me test the whole gene? I can’t imagine it’s because they are ignorant. Is it cost or do they not have all the gene info due to how they acquire the sample or something else?
- cma 8y agoCost, but they keep some of the PCRed DNA around and could do it for all their existing client base in the future, for free if selling what they can of the data begins to outweigh the cost.
- l33tman 8y ago23andme only searches for known snips (SNPs, single nucleotide polymorphisms), they don't scan the genome, that is still a fairly costly and slow procedure (although it's radically getting cheaper and cheaper!). https://customercare.23andme.com/hc/en-us/articles/115004459928-Raw-Data-Technical-Details https://customercare.23andme.com/hc/en-us/articles/115004459...
- criddell 8y ago> that is still a fairly costly and slow procedure How many zeros are we talking about? Does anybody offer the service?
- notahacker 8y agoLots of people offer whole genome sequencing. Dante Labs is currently offering it at EUR 259 (no affiliation: I got their mailshot because I bought their lower still Black Friday offer). Typical lab costs are thought to be more in the $1k range, with the assumption that some of these offers are made with the intent of rapidly acquiring a large corpus of anonymised full genome sequences which they hope most of their customers won't opt out of being analysed for commercial scientific research. https://www.dantelabs.com/collections/our-tests/products/whole-genome-sequencing https://www.dantelabs.com/collections/our-tests/products/who...
- testplzignore 8y agoAccording to https://en.wikipedia.org/wiki/$1,000_genome https://en.wikipedia.org/wiki/$1,000_genome, the cost for whole genome sequencing is now under $1000, with some companies now coming very close to 23andMe's $100-$200 price. I haven't found any info on whether 23andMe is moving in this direction instead of their current methodology.
- chriselles 8y agoVeritas Genetics offered 30x coverage full genome sequencing in the lead up to Xmas for $199 to the first 1000 customers. They sold out in about 6 hours. Veritas offered $999 full genome sequencing since 2016. My guess is that we should see a new regular/lower price later this year.
- helipad 8y agoIs it me or are there suddenly a lot of anti-DNA testing articles being published lately? Is there a particular lobby that I'm not aware of?
- ChrisSD 8y agoIt's the hype backlash. There were a lot of over the top pro DNA testing articles in years past so now the hype cycle has moved on to the next stage.
- jcutrell 8y agoThis is interesting. Is there actual research on “hype cycles?” I want to read it if so.
- ChrisSD 8y agoNot that I'm aware of. It's more a comment on how at some point the press overhypes some tech which then leads to an inevitable correction. Hopefully it's true value is appreciated afterwards but that's not a given.
- jobigoud 8y agoI just checked and indeed there is research. The most popular model that we all know is called the Gartner Hype Cycle. https://www.gartner.com/en/research/methodologies/gartner-hype-cycle https://www.gartner.com/en/research/methodologies/gartner-hy... Arxiv has a few articles on hype cycles for example: "A simple interpretation of the growth of scientific/technological research impact leading to hype-type evolution curves", Campani, 2014. https://arxiv.org/abs/1410.8685 https://arxiv.org/abs/1410.8685 "Hype Cycle Dynamics: Microscopic Modeling and Detection", Hashemi, 2018. https://arxiv.org/abs/1809.08939 https://arxiv.org/abs/1809.08939 You can also type "gartner hype cycle" in Scholar or sci-hub and there are many hits.
- avip 8y agoSubmarine in action. “by editorial board” being your red flag. Journalism is in a financial crisis so we see more and more paid content.
- cassowary37 8y agoRelevant fine print from FDA decision: i A prominent and conspicuous limiting statement that the test provides only a preliminary test result that needs to be confirmed using an independent pharmacogenetic test without such a limitation prior to making any medical decisions. Alternatively, appropriate design verification and validation activities, including the generation of robust analytical data demonstrating appropriate analytical accuracy and reliability of test results for each genetic variant included in the test report, must be performed that demonstrate that the test can be used to make well-informed clinical decisions. In other words, any test results (at least related to drug metabolism) require... confirmation with another test?
- mertd 8y agoThey are just saying don't take medical action based on our results and hold us liable.
- skwb 8y agoTwo things: 1. 23 and Me has a history of overhyping their science when it comes to medical claims. FDA back in 2013 threatened regulatory action due to their wafarin (blood thinner) metabolism claim. https://www.fda.gov/ICECI/EnforcementActions/WarningLetters/ucm376296.htm https://www.fda.gov/ICECI/EnforcementActions/WarningLetters/... 2. FDA regulates marketing and claims that you can make for products including drugs/devices (but that whole regulatory framework is a story for another day). You need to have certain regulatory approval for formalized medical testing/reimbursement (remember that 23 and Me is targeting consumers, not traditional patients).
- jcutrell 8y agoSo this seems to suggest there may be plenty of false negatives, but I think the key factors in this article are at the end: Family history and genetic contributions to disease. I personally decided to throw our 23andme tests out, for a variety of reasons (health privacy being one), but one of them is health anxiety. It feels unnecessarily anxiety inducing to provide this info, in either case. If i have a mutation, I may live with some elevated fear of something inescapable that never materializes. If I get negative results, I may wonder “what about the ones they didn’t check?” Either way, I end up with less actionable information. Kind of a psychological phenomenon here - more data in this case doesn’t necessarily result in more information, because interpretation matters so much in this arena.
- jackpark 8y agoI,OTOH, which I had had my 23&me results years ago since what they tell me now might have prevented a costly experience back then. I totally get the "health privacy" issue, what with Google looming in the background along many dimensions, but for me, that was not a big issue. I also think that there is an aspect of 23&me that is being ignored in the NYTimes piece, the social network growing around real phenotypes in the context of genotypes.
- jedberg 8y agoI’ve always assumed that my 23amdme results were merely guidelines. If it says I don’t have something, then that means nothing. If it says I do have something, then that means I should be on the lookout for other corroborating data or symptoms. It actually helped me find an explanation for some weird symptoms I was having. After I told the doctor, “23amdme says I may have X” he said “yeah all those things could be symptoms of X” and we went from there.
- deleted 8y ago[deleted]
- DenisM 8y agoDid any treatment result from this discovery?
- Baeocystin 8y agoNot the person you asked, but in my case, yes, after additional independent verification. It is not a huge deal, but it did result in a real quality-of-life improvement. I am grateful for what I learned.
- DenisM 8y agoGrats!
- jedberg 8y agoNot yet. Just watching to see if becomes serious.
- hanklazard 8y agoThat seems like the right way to use it. Unfortunately, I think a lot of people will not be so pragmatic.
- RyJones 8y agoExactly. 23 and me helped find an older half sister, but the health stuff? Eh...
- carbocation 8y ago23andMe currently uses a genotyping chip, not gene sequencing. So, this article is misleading at the top (but gets more accurate at the bottom). Early variant discovery suffers from the winner's curse phenomenon: we overestimate the effect of newly discovered mutations. As time has gone on, it has become clear that even for many Mendelian diseases, the genetic background plays a significant role in terms of who will develop the disease (or how early they will do so). The estimates of "penetrance" have fallen as we have obtained more data. This affects clinical genetic interpretation as well as the automated stuff that 23andMe is doing.
- rfc 8y agoThis is our biggest gripe with the service. We have a lot of consumers that ask us to perform gene sequencing for them expecting to get something similar to 23andMe. It's always a hurdle to explain the difference between what we do (targeted gene sequencing) and genotyping chip. They're a worlds difference and requires some reading.
- phyzome 8y agoThose videos were totally unnecessary, and could have been still images.
- hliyan 8y agoI felt videos 2 and 3 were the most helpful parts of the article. I wish more science/tech articles could rely on graphical/animated explanations. After all, they do speak a thousand words.
- awgm 8y agoUsually pictures (still images) are said to "speak a thousand words", not videos or animations.
- phyzome 8y agoIf an image says 1000 words, those videos said about 1002 words, and showed up as blank spaces until I right-clicked and selected "play". (Before that, they said 4 words: "This site looks broken".)
- buboard 8y ago23andme used to give health reports for years and these issues were known. After all , i doubt its clients consider it a health service, it is at best a novelty. Plus, its health reports are completely unavailable in europe. Still, if someone is curious to check their disease risks, there is promethease
- Baeocystin 8y agoI realize this is just my personal experience. That being said, I was an early customer of 23andme, and their health checks actually alerted me to two different things that I have since taken appropriate measures for. They were legitimate issues that I hadn't sussed out previously, but further testing confirmed them. I'm grateful for what I learned.
- buboard 8y agoi have the old reports too, and even though i did not learn something i didn't know, i wish i could have new ones, with the added knowledge from ~5 years of research.
- Baeocystin 8y agoSame. There's always https://promethease.com/ https://promethease.com/ , but 23andme did/does a better job at data presentation.
- skwb 8y agoI whole heartily disagree. There is significant patient risk when it comes to bad testing information. Women may attempt to elect to get invasive procedures (such as double mastectomy) based on their perceived BRCA status. This may lead to the rare infection and potential death, not including the emotional and physical suffering. And as the article alluded to, 23 and Me did "cross the line" when it started reporting warfarin related variants, when the science wasn't well understood [1]. Americans have already agreed that when it comes to healthcare markets, more rather than less regulation is necessary for making clairvoyant decisions (ie Federal Food, Drug, and Cosmetic Act which created the modern FDA). I think there is clearly potential for policy reform, but the complete lazzie-faire economic model just simply doesn't apply to the healtcare market. [1]. https://www.fda.gov/ICECI/EnforcementActions/WarningLetters/ucm376296.htm https://www.fda.gov/ICECI/EnforcementActions/WarningLetters/...
- agigao 8y agoAn extract from the article: “23andMe has said that its health tests can raise awareness about various medical conditions and empower _consumers_ to take charge of their health information.” It’s a damn NEW DARK AGE way of thinking to refer PEOPLE through one single universal word all the time - A CONSUMER! Choose any word from x, and carefully observe your thoughts afterwards: ”23andMe has said that its health tests can raise awareness about various medical conditions and empower _x_ to take charge of their health information.” x = [“customers”, “individuals”, “humans”, “people”, “citizens”, etc]
- tomnipotent 8y ago> It’s a damn NEW DARK AGE It's a business, and if you give them money that makes you a consumer. What's wrong with that?
- brobdingnagians 8y agoI think the issue is mainly that people are multi-dimensional and referring to them as `consumers` boxes them into "thing x that buys our stuff and exists for consumption" instead of framing is as "this is a person that we developed technology because it will improve their lives (and give us money)". Profit is important for a business and helps drive efficiency and measure effectiveness, but I think it is still good use language that doesn't dehumanize the fact that the world is made of people and meeting the needs of people is ultimately the important thing, not simply number in Excel that represent our cashflow. Even customer is a better word, since it represents a person who comes to you voluntarily for an exchange of value, not just consumption.
- agigao 8y agoThank you! :)
- tomnipotent 8y agoConsumer is appropriate here and the word makes a difference. I'm a customer of 23andMe, but I'm not a consumer (purchased for others, have not used myself). We live in a world where words mean something specific, generally to communicate an idea, not warm fuzzy feelings, and it's important that we use the right words so not to fall into the trap of multi-national businesses pretending their employees are "family" because it sounds nice.
- moneywoes 8y agoI have Celiac disease. Would it be beneficial for me to take one of their tests to see where my condition originated?
- nine_k 8y agoIf I were in your shoes, and planned to have children, I would go for it, just in case.
- m0zg 8y agoFWIW, gene testing may never be able to predict the exact odds, since some of the diseases heavily depend on environmental factors (what you eat, how much you exercise, how much you're exposed to carcinogens and sun, etc). In other words, the real distribution here is _posterior_, whereas the best 23andMe can do is somewhat accurately predict the _prior_. FWIW, my analysis from years ago seems to match the specific health issues my parents are now having in their late 60s. I haven't done the test for them, so it's not like 23andMe just cheated by randomly throwing in the answers from their health questionnaire. I now bring those up with my physician and optometrist and have them check for signs of disease. What baffles me is why they aren't doing it themselves. A full genome sequencing (!) costs just $1k. I pay more than that for health insurance every month.
- thaumasiotes 8y ago> gene testing may never be able to predict the exact odds, since some of the diseases heavily depend on environmental factors (what you eat, how much you exercise, how much you're exposed to carcinogens and sun, etc). All of those examples are themselves strongly predicted by your genes. The weakest is what you eat, but just knowing what country the customer is based in is probably enough to go forward with.
- ziont 8y agothis is a bad fucking idea to allow your DNA sequences to be shared with the government. but seems like a trend now, just to blindly copy what celebrities endorse so more power to you folks who submitted your DNA, you can never take it back, and they have it forever. Any crime your descendants or you commit in the future or the propensity to commit crime under the right psychosexual circumstances carefully driven by subliminal messaging, are fucked.
- pofilat 8y agoCalifornia has been stealing DNA from babies and guests of the criminal justice system for over 30 years. https://sacramento.cbslocal.com/2018/05/14/california-newborn-dna-database-shocks-parents/ https://sacramento.cbslocal.com/2018/05/14/california-newbor...
- ziont 8y agothat is quite chilling but not surprising from the US. I wonder if this had impact on the drop in crime rates during the 90s. Imagine a carefully targeted campaign against genetically disposed to violence and allergy to education. You can sterilize entire 'hoods bye putting guns, drugs and alcohol there and just wait for the environment to infect all others. Like considering the overwhelming prison population in the US is black or latino, you can't help but wonder at some grand conspiracy that's aimed at sorting out the unfit from the normal.
- magnat 8y agoI'm still not sure about privacy side of the 23andMe. Whole testing procedure could be designed to be completely anonymous, yet upfront I have to provide name, address, birthday and e-mail. Why do people willingly provide DNA samples together with personal information?
- buboard 8y agoeven if they didn't, they need postal name/address to send the kit
- magnat 8y agoNot really. I can buy the kit from a reseller or even OTC by cash and send it back without providing a return address. Apart from that, I shouldn't need to register on their website to access my results. There could be unique, randomly generated URL on a scratch card in the kit, where the results will be put as soon as they are done with sequencing.
- arikrak 8y agoDo they verify the information, couldn't someone use a pseudonym? (Though then your relatives who take the test might be surprised by the new relative they discover..)
- nilram 8y agoI bought a test and had to use my own name for shipping and payment (because of the delivery and payment services involved). Someone else (cough, cough) registered the test for their own sample and the results. For 23andme, the discovery of relatives is optional. A user can choose to not receive any information about potential relatives, or to disclose minimal information, to allow messaging without names, or to disclose a name. I may be misremembering some of the granularity, but names do not have to be automatically disclosed.
- pstuart 8y agoThe data can be analyzed by other parties for additional insights. I'm a big fan of Dr. Rhonda Patrick -- her team allows you to submit your 23andMe data for additional tests: https://www.foundmyfitness.com/genetics https://www.foundmyfitness.com/genetics I've not yet done this myself but am planning to do so later this year.
- uhrlocher 8y agohttps://www.theatlantic.com/magazine/archive/2017/04/why-is-silicon-valley-so-awful-to-women/517788/ https://www.theatlantic.com/magazine/archive/2017/04/why-is-... https://www.newsweek.com/2016/06/17/silicon-valley-takeover-468182.html https://www.newsweek.com/2016/06/17/silicon-valley-takeover-... https://medium.com/@preethikasireddy/why-im-leaving-silicon-valley-72919edb3297 https://medium.com/@preethikasireddy/why-im-leaving-silicon-... https://getlighthouse.com/blog/silicon-valley-bad-managers/ https://getlighthouse.com/blog/silicon-valley-bad-managers/ https://www.philanthropy.com/article/A-Star-Performer-Created-a/243159 https://www.philanthropy.com/article/A-Star-Performer-Create... https://www.theglobeandmail.com/report-on-business/international-business/a-valley-too-far-is-the-toxic-culture-of-the-tech-world-beyond-repair/article35610645/ https://www.theglobeandmail.com/report-on-business/internati... https://www.geekwire.com/2018/emily-chang-brotopia-silicon-valley-companies-can-tackle-toxic-culture/ https://www.geekwire.com/2018/emily-chang-brotopia-silicon-v... https://www.entrepreneur.com/article/297481 https://www.entrepreneur.com/article/297481 https://thenextweb.com/insider/2017/03/11/bro-culture-poisoning-silicon-valley/ https://thenextweb.com/insider/2017/03/11/bro-culture-poison... https://www.quora.com/Is-the-culture-in-the-Silicon-Valley-becoming-increasingly-toxic?share=1 https://www.quora.com/Is-the-culture-in-the-Silicon-Valley-b... https://www.vanityfair.com/news/2016/06/ellen-pao-memoir-silicon-valley-toxic-culture https://www.vanityfair.com/news/2016/06/ellen-pao-memoir-sil... https://www.recode.net/2018/2/5/16972096/emily-chang-brotopia-book-bloomberg-technology-culture-silicon-valley-kara-swisher-decode-podcast https://www.recode.net/2018/2/5/16972096/emily-chang-brotopi... https://www.glassdoor.com/Reviews/Silicon-Valley-Community-Foundation-Reviews-E331546.htm https://www.glassdoor.com/Reviews/Silicon-Valley-Community-F... https://www.wired.com/story/everyone-hates-silicon-valley-except-its-imitators/ https://www.wired.com/story/everyone-hates-silicon-valley-ex... https://www.intelligencesquaredus.org/debates/silicon-valley-has-lost-its-soul https://www.intelligencesquaredus.org/debates/silicon-valley... https://yourstory.com/2017/07/silicon-valley-bro-culture/ https://yourstory.com/2017/07/silicon-valley-bro-culture/ https://www.wsj.com/articles/the-quiet-efforts-to-battle-silicon-valleys-bro-culture-1541943938 https://www.wsj.com/articles/the-quiet-efforts-to-battle-sil... https://thebolditalic.com/a-source-of-sorrow-in-silicon-valley-1a81ccd80ac2?gi=bc741a45779e https://thebolditalic.com/a-source-of-sorrow-in-silicon-vall... https://www.bizjournals.com/sanfrancisco/news/2019/01/25/is-silicon-valley-the-real-villain-in-the-theranos.html https://www.bizjournals.com/sanfrancisco/news/2019/01/25/is-... https://www.rawstory.com/2018/07/silicon-valley-become-next-detroit-struggles-survive-toxic-mess-created/ https://www.rawstory.com/2018/07/silicon-valley-become-next-... https://builttoadapt.io/so-you-want-to-build-a-silicon-valley-like-software-developer-culture-focus-on-the-people-809ddf4c426a?gi=af0b0c66fd4f https://builttoadapt.io/so-you-want-to-build-a-silicon-valle... https://www.youtube.com/watch?v=h3-bMDaMhLg https://www.youtube.com/watch?v=h3-bMDaMhLg https://www.theguardian.com/world/2017/mar/01/silicon-valley-sexual-harassment-startups https://www.theguardian.com/world/2017/mar/01/silicon-valley... https://www.indiewire.com/2018/07/silicon-valley-actress-alice-wetterlund-t-j-miller-co-stars-enabled-bullying-1201985168/# https://www.indiewire.com/2018/07/silicon-valley-actress-ali...! https://www.theneweconomy.com/technology/silicons-sexist-brogrammer-culture-is-locking-women-out-of-tech https://www.theneweconomy.com/technology/silicons-sexist-bro... https://news.ycombinator.com/item?id=17051800 https://news.ycombinator.com/item?id=17051800 https://www.losaltosonline.com/news/sections/schools/210-school-features/55819- https://www.losaltosonline.com/news/sections/schools/210-sch...
- evrydayhustling 8y agoWait, this is from the NYT's editorial board? I love the NYT, but why on Earth would I look to its editors for scientific/medical advice? And why on Earth would they opine?
- skwb 8y agoWell for one is Sarah Jeong. Despite internet conservative white males not understanding irony and sarcasm, she is a thought leader when it comes to the intersection of technology and law. I don't know her writing on science/medicine, but her writing on technology and law are in the top of the field. I trust her (and the NYT brand) to consult with medical professionals who know what they're talking about. And for what it's worth, this particular NYT article is pretty on point for their analysis as read by a bioinformatics PhD student.
- evrydayhustling 8y agoWeird digression! I happen to agree Sarah Jeong's work is worthwhile, but like you said it's not her field, and none of the editorial board list anything about medical focus. Re: consulting experts, sure and agreed - but then why not do it as a reported piece and like, quote the experts? > this particular NYT article is pretty on point for their analysis as read by a bioinformatics PhD student Really? With stuff like "23andMe’s breast cancer screen looks at just a handful of places in the gene where mutations are known to appear. That’s like proofreading a document by looking at only a handful of letters"? Bioinformatics research background here, too, and as far as I know all of those screens scan particular sites and not a full sequencing -- because the sites are the only thing we have clinical evidence for anyway. I don't doubt that there are more comprehensive screens on the market, but arguments like "only 2% of the population has these mutations" are rhetorically misleading without comparative details, like how much of the population has detectable mutations of any kind. I think using an opinion page level of rigor to make arguments of this kind misleads some people, and leaves everybody else in a place of choosing whether to "trust the NYT brand" as opposed to providing them evidence.
- skwb 8y ago