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How Anne Wojcicki’s 23andMe Will Mine Its Giant DNA Database
- rando444 7y ago>Wojcicki was also building out an in-house drug-research group and tapping into a new revenue source: recruiting thousands of patients from 23andMe’s database for pharmaceutical firms’ clinical trials. This is the most responsible way to use the data. The way this model works is that a pharmaceutical companies have a question that requires a genetic database to answer. They then pay 23andMe for the results of these tests. 23andMe does not have to give up any customer data to any third party and can at the same time build a solid business model around using their data for positive medical advancements.
- sonnyblarney 7y ago- Business model? "... generating an estimated $475 million in revenue for the company, which has yet to turn a profit." - Medical legitimacy? “Effectively what you have is a technology that is neither that helpful [nor] that harmful (...) Dr. Jonathan Berg, a clinical geneticist at the University of North Carolina at Chapel Hill." - PR Signaling? “It was so unacceptable to her as a compassionate human,” says Ashley Dombkowski, (...) “She is undeterred by massive, worthwhile problems.” - Personal Branding? Cue the Jobs-esque clad-in-black shots. - 'Certainty' in the face of material uncertainty? "By October 2013, 23andMe was in talks with Target and Wojcicki was pushing hard to enter stores before the holidays (...) Emily Drabant Conley, recalls Wojcicki’s certainty when an exec thought it was impossible to meet the time line: “Anne was like, ‘This is a company that was founded on impossible.’” But in the end, impossible won. It would take three more years for 23andMe to get onto Target’s shelves. " ... so where have seen seen this before? I'm glad that Forbes is taking a slightly more skeptical tone this time, at least calling out some of the issues and not taking PR at face value. I actually hope they are successful, though I'll never participate due to obvious privacy concerns.
- ianai 7y agoWhen will people place a value on their personal data? A video uploaded with a copyrighted song in the background can be challenged by the IP owner and often is. But even with public outrage over things like PI breaches at Equifax, 23andme gets full ownership of peoples’ dna.
- erikig 7y agoLet’s play devils advocate - “So what? What is the big deal if my DNA info is out in the public?”
- nickles 7y agoThis talk from DEF CON goes into some of the potential risks of sharing DNA. In short, it conceivably opens a person to targeted attacks designed to recognize specific individuals, families, ethnicities, etc. [0] https://youtube.com/watch?v=HKQDSgBHPfY https://youtube.com/watch?v=HKQDSgBHPfY
- paulryanrogers 7y agoAre you comfortable paying more for health insurance because you lost the generic lottery? How about facing persecution because of your ancestry? Hiring discrimination? (Of course the data doesn't have to be accurate or the analysis correct to suffer.)
- matz1 7y agoFirst of all, anything can have a downside. Doesn't seem a big enough concern, how likely I'm going to win lottery? How about the insurance company? Forced them to lose money? They won't hire me because my ancestry? Well they are stupid then, it's their lost.
- Swenrekcah 7y agoHow about you are 3% more likely to develop a chronic illness and as a resut no company touches you for anything except manual grunt work where you could be replaced without much trouble?
- matz1 7y agoMore likely the reason to use all data as much as you can to find the cure. manual grunt work will be replaced by automation anyway regardless of you develop chronic illness or not.
- siculars 7y agoAnyone surprised? For this and other reasons I've refused to use their service and other services like theirs. Here's a service. Pay to get your panel/exome/whole genome sequenced, put your data on gcp/aws/azure, user open source to do variant analysis and pay a specialist for their computer aided analysis. Guess what, you own your data end to end. I imagine the above could be had for less than $2k. Some startup will write the software stack to do this and simply sell licenses for software you run anywhere you want.
- Lyle-Cantor 7y agoNo one should be surprised, their database is extremely valuable. They have a labeled database of millions of genomes. Once they sequence them all, then they just need to buy Luminosity (which is basically a site full of IQ tests) and find their common customers. If they have a millions common customers, then they can build a predictive model for IQ. Repeat with any other trait you want to predict. Hell, buy a video game company and embed behavioural tests within it. Sell it for use in embryo selection, employee profiling, to governments.
- zxcb1 7y agoHuxley?
- dahfizz 7y agoI think that's an incredibly small niche. So few people care that much about privacy or have the technical awareness. This solution costs a lot more and requires more work from the user.
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- Symmetry 7y agoNot surprised, contributing to our understanding of genetics was half the reason I signed up for 23andMe.
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- draklor40 7y agoHasnt anybody ever watched Gattaca ?
- buboard 7y agoI am for one glad my data is in there. Disease and aging should be our number 1 priority. If your governement and insurance systems are shitty and spy and exclude people, you should fix that instead of putting barriers to science opportunity.
- untog 7y agoNice fantasy world to live in, where disease an aging are our number one priority and the insurance system is fixable. Why not fix both of those things first before feeding our personal data into a fundamentally broken system?
- throwaway2048 7y agoHow about we fix it before putting people at massive risk of harm, and risk poisoning the well on genetic research forever?
- buboard 7y agoright, i dont see anyone arguing for that in here though
- windexh8er 7y agoI partially agree with your angle, however I don't understand the jump from how understanding disease and giving my DNA to a for profit company that may not fully be researching, but showcasing disease, removes "barriers to science". Care to expand?
- buboard 7y agoIf not for 23andme, who would have created a comparably big database of SNPs? I dont understand what showcasing disease means. I know we are all good people, but most of novel science happened with methods that we would find totally unacceptable today, from lobotomizing people, to deafferenting cats, to sending dogs to space. If 23andme didnt have established a large user base, it would be impossible to get a comparably big database given today's regulations (and climate).
- draklor40 7y agoHasn't anyone ever watched Gattaca before shipping their DNA sample to a Silicon Valley company ?
- hannasanarion 7y agoGattaca is not a documentary
- neolefty 7y agoNeither is the 2059 Genetic Equality Program, described in this op-ed: https://www.nytimes.com/2019/05/27/opinion/ted-chiang-future-genetic-engineering.html https://www.nytimes.com/2019/05/27/opinion/ted-chiang-future...
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- lokl 7y agoDNA sequences should be viewed differently than other personal data, since they are personal not only for you, but also for your children, grandchildren, siblings, parents, etc. When you make a decision to share this data, you are making a decision for them, too. The implications might not be the same for your great-great-grandchildren, but who can tell whether the impact will be better or worse? How will it be possible to use the information in the future, when technology, science, law, politics, and social customs might be quite different? We often see complaints about big companies selling their users' personal data, but in this case the decision lies with each individual who shares his DNA sequence. Do you believe it is ethical to share your relatives' personal data without their consent?
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- HenryBemis 7y agoOn a similar process I find disturbing that when a friend decides to use WhatsApp and the decide to share their contacts with (f...ing) Facebook, they give them my name, surname, phone number, and who knows what else is in that contact card. They don't ask me, I don't approve that, but still Facebook gets my data. Same applies for Viber, Signal, etc. of course.
- dessant 7y agoI agree with you, though Signal does not get access to your contact list, in case anyone is looking for a less user hostile messaging app. https://support.signal.org/hc/en-us/articles/360007061452-Does-Signal-send-my-number-to-my-contacts- https://support.signal.org/hc/en-us/articles/360007061452-Do...
- octorian 7y agoUsing WhatsApp just shares the raw phone number. None of those other details leave your phone. (Of course sharing /w the Facebook app is probably a completely different story.)
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- highstep 7y agoquick america! fix your health system before the insurance companies know all
- dymk 7y agoIt's been illegal to discriminate health insurance based on DNA content since 2010
- shakyshakyshaky 7y agoAnd as we all know, insurance companies never do illegal things
- drilldrive 7y agoAnne Wojcicki, ex-wife of billionaire Sergey Brinand whose sister is CEO of Youtube is at the helm of the most invasive and extensive data set known to man. Don't fool yourselves: DNA databases form the bedrock of de-anonymization so crucial to the Surveillance State, containing the non-consentiory grounding of your existence and your lineage. And let us not forget the easiness of collection, for a sample of sputum suffices.
- unixhero 7y agoYou can always fake your name when you submit the DNA. Then this doesn't really matter.
- vajaya 7y agoI regret taking their test with 200 bucks now. It used to be novel and years back, the concept of a totalitarian society with surveillance, database, social credit was still very remote
- jdavis703 7y agoIn the UK credit scores have been tied to social behaviors like voting. Similarly London has been famed for their CCTV system that allegedly keeps crime low. And let’s not forget the CompStat database system that is credited with turning NYC from one of the most dangerous western cities to one of the safest. My point is, that at least within the time range of cheap genetic tests, these “totalitarian” systems have already been in place.
- qbaqbaqba 7y ago> voting How?
- Kenji 7y ago> years back, the concept of a totalitarian society with surveillance, database, social credit was still very remote Really? I don't think so at all, the threat has been known for decades. For at least one decade it is well-known that the information gathering has become aggressive and a real threat.
- lymeeducator 7y agoThe main priority of these medical and genetic companies is to make money. Safety, ethics and privacy are secondary until they effect the profit. It seems increasingly apparent that public funding and open source efforts are required to advance the science, healing and education of our planet. DNA SNPs are one thing, but genetic expression (phenotype) is immensely complex due to the number of variables. For example, mammalian immune systems are highly redundant across the body and continually signal with cytokines and chemokines to manipulate the immune response that is internally/externally environment dependent. Our bodies continually work to remove/detox OR sequester pathogens, toxins, metals, etc. This usually results in isolated and/or systemic inflammation across the body. Many of the pathogens manifest with overlapping symptoms making it hard to isolate without better diagnostic tools. For example, my two strains of Bartonella cause inflammation in many similar areas that Lyme bacteria do and Babesia has another similar set. It is hard to isolate those symptoms from the mold toxins and metal (aluminum, arsenic, lead) buildup that I also have. Functional doctors believe the HLA SNPs play a role in accumulation rather than removal. Enter saunas/sweat tents/etc that many cultures used for centuries (lymphatic detox). Enter public funding to invent better and cheaper measuring equipment where each of us owns the data. Privacy protection is also important. We live on a planet with immense biodiversity, albeit shrinking daily due to human activities, where we coexist with bacteria, pathogens, molecules, industrial toxins, etc -- It's time we start to learn more about everything ... gathering data in a coherent schema and applying ML can certainly help. That is why there are a number of studies that list various pathogens in brain deposits for Alzheimers, MS, Giant Cell, etc -- Feel free to google and research many of the terms above and reach your own conclusions :-)
- jnordwick 7y agoThis is so rude and self-aggrandizing: "Anne Wojcicki is 45 minutes late, something so encoded in her habits as 23andMe’s CEO that employees have stopped complaining about it. They know it’s hardwired. They know it’s hardwired. On a Thursday morning in April, her team is waiting patiently as she swirls into the company’s headquarters" From the opening sentence, I already don't like her.
- dang 7y agoOk, but please don't post unsubstantive comments here.
- iandanforth 7y agoI'm not a huge fan of GSK making money off this data, but I am a huge fan of having the data be available. Did you know you can download all your 23andMe data and make it publicly available through openhumans.org? Here's mine: https://www.openhumans.org/member/iandanforth/ https://www.openhumans.org/member/iandanforth/ I want this data out there to help any and all researchers. The more free, public data exists the easier it is for researchers without GSK levels of cash to make discoveries and contribute back to the community. Just like OSS, someone has to be willing to give away something that has historically been sold. I'm willing to do that and I hope you will as well.
- wpasc 7y agoThank you for being so open. I feel similarly about my own genes but I do not have them sequenced yet. A lot of people are talking about the security concerns and whose making money. Valid concerns, but I think medicine does need vast amounts of genetic data available to actually make some progress. Medical progress is not advancing fast enough by some very real metrics (5 year cancer survival rate over 40 years is not at ALL impressive when you factor in diagnoses being made earlier). Ownership of this data is important, but if genetic data was more freely shared I think medical progress would benefit.
- maxheadroom 7y ago>...but I think medicine does need vast amounts of genetic data available to actually make some progress. How does more genetic data equate to better progress with medicine? Are we testing medicine against specific genome sequences, now? If so, how are we doing that without the source host[s] to test against? >Medical progress is not advancing fast enough by some very real metrics... Again, I'm not seeing how these two equate, whatsoever. For what you're talking about the genomes would have to be reproduced, such as the markers that are the precursors for breastcancer. Then, the tissues, themselves, would have to be reproduced and then you'd have an effective field with which to test new medicines against (unless you just use the people with the markers to test). How you're getting from a mapped sequence to better medicine is... ...we're simply not there, yet, technologically, I believe. Unless you know something I don't? (Which could very well be the case, admittedly, but I doubt we're at the stage of computer models for genome engineering, tissue growth, cellular division, etc. all in one.)
- c3534l 7y agoWhy isn't this protected medical information?
- puskavi 7y agoGood luck getting an insurance when they got your DNA
- eristalt 7y agoI recently interviewed with a 23andMe employee and specifically asked about the company's concerns regarding the public's perception of data privacy. The 23andMe employee was absolutely adamant that 23andMe would never sell customer data or allow anyone else access to it for commercial reasons. They said it went totally against company principles and that the company cares deeply about it. And now this. I wonder if that employee was just not very attentive to what was actually going on, or perhaps the company leadership deceived the rest of the company? Or maybe this is just yet another example of a once-noble company inevitably succumbing to the allure of "growth at all costs".
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- ryanmarsh 7y agoSome time ago a friend who works at a biotech startup in the DNA sequencing space told me there’s no way 23andMe’s price covers the sequencing cost and that they must be subsidizing the kits so they can sell the mined data later.