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23andMe licenses its own drug compound to Spanish firm Almirall
- BitwiseFool 7y agoThis is great. I had a 23andMe test done years ago and one of the reasons why I chose to do it was because my genetic data might be helpful for others. I personally don't feel like I 'own' my genetic code and I'm quite happy to let scientists analyze it. However I understand while many people do not feel the same way.
- pvaldes 7y agoSaying that you do not own your unique genetic code is not much different than saying that your ears, eyes or kidneys are not yours, and might be helpful form others, so anybody could take them. Think about it.
- gpm 7y agoThere is a huge difference between physical objects and information.
- pvaldes 7y agoIs not so easy. A DNA chain is a physical object and information at the same time. If you copy it, you are copying an object that could be used to "make a copy of you", and allowing "random company or people" to pick this info opens the door to several problems. i.e. Imagine that somebody stole your sperm somehow and use it to make a child and blackmail you asking for money each month for 18 years because you are "the father", so pay me. Boris Becker suffered a similar case. In the same way synthetic fragments of your DNA could be left in a crime scenery. It would be enough to clone only the handful of good parts able to trigger a rape test, and we have machines that could be feed with your public data and programmed to do this. No need to say that this could put you in a jail for the rest of your life, or worse. You need to protect yourself from a lot of posible evil uses of your unique code, past and future.
- gpm 7y agoNo one is using the physical objects for their research. They sequenced it (at your request) and are only using the information for research...
- pvaldes 7y agoThis information can be easily used to regenerate partially the physical object.
- deleted 7y ago[deleted]
- TheAceOfHearts 7y agoAre you saying you wouldn't download a car?
- mapcars 7y agoEasily? Any proof that it had been done?
- damon_c 7y agoIt is very different. Ears, eyes and kidneys are unique physical manifestations of the code. The code is just information.
- georgyo 7y agoThat's a bit of a strawman. I guess people shouldn't donate blood with your line of thinking. It's apparently the same as donating an organ that doesn't replenish itself.
- pvaldes 7y agoIs a different situation. The blood that you donate is not taken for making a profit by a private company. Is strongly regulated and do not depends of the income of external investors expecting a profit. At difference of a private company, nobody will buy the goverment tomorrow.
- georgyo 7y agoWrong, profit is made. It can go to for profit hospitals who charge for it, or at least the service if administrating it.
- clSTophEjUdRanu 7y agoI like that. Yes profit is made and I see none of that profit but I don't care because the blood still ends up in another human who needs it.
- tathougies 7y agoGiven that I literally gave half my genetic code to my daughter and she does not actually have any portion of my literal ears, kidneys, or eyes, I think you're overdramatizing.
- georgyo 7y agoI don't mind reaching being done on my DNA. Where 23andMe crosses lines is let people search the archives that still contain all the PII attached, such as police departments. That is a breach of trust.
- deleted 7y ago[deleted]
- dahinds 7y agoWe've never done that. https://www.23andme.com/transparency-report/ https://www.23andme.com/transparency-report/
- rckoepke 7y agoThat's a great transparency report and I'm stoked to see that you actually appear to actively fight invalid legal requests for data. According to your "Guide for Law Enforcement"[0] ... It's really just by luck/coincidence that you can even claim "We've never done that". Again - it's nice and mildly surprising to see that you haven't received an NSL yet. But I would bet $1,000 to charity that you will be legally forced/required/obligated to provide some PII/DNA data to law enforcement in the next 10 years. A question: DNA samples, in a vacuum, don't seem particularly useful (even with a name/face attached). Does 23&Me aggregate medical histories to associate with DNA samples? If so, where do they get the medical data for specific individuals? [0]: https://www.23andme.com/law-enforcement-guide/ https://www.23andme.com/law-enforcement-guide/
- dahinds 7y agoCustomers can opt in to participate in our research program, and can then choose to provide additional information by i.e. filling out surveys.
- toomuchtodo 7y agoYou're thinking of GEDmatch, which was recently sold. https://www.theatlantic.com/science/archive/2018/06/gedmatch-police-genealogy-database/561695/ https://www.theatlantic.com/science/archive/2018/06/gedmatch... https://www.nbcnews.com/news/us-news/new-owner-consumer-dna-database-gedmatch-vows-fight-police-search-n1099091 https://www.nbcnews.com/news/us-news/new-owner-consumer-dna-...
- munchbunny 7y agoI personally don't feel like I 'own' my genetic code and I'm quite happy to let scientists analyze it. However I understand while many people do not feel the same way. I think the usual objection is not about losing ownership of your genetic code, but rather the privacy concerns that come with a company selling (access to) your literal source code to large companies with questionable intentions.
- dpiers 7y agoI'm relatively paranoid when it comes to privacy and also did 23andMe for similar reasons. I stopped thinking of my DNA as a secret when I realized how impossible it is to keep other people from having access to it. Once someone knows it, you cannot change it like a password. DNA is an anti-secret. You share it everywhere you go and cannot stop. It's no more secret or personal than your shoe size or height.
- enriquepablo 7y agoDNA is an anti-secret in the same way that digital rights management schemes are an anti-secret. DRM schemes only work through legal support; and in my opinion, legally protecting the secrecy of DNA is much more sensible (from a human pow, rather than from an economic growth pow) than legally protecting the secrets behind DRMs. People can be actively harmed, can be discriminated laboraly for example, if their DNA is public, as opposed to being devoid of some imaginary profits.
- stanmancan 7y agoMy concern in these services is, at what point in the future does your DNA get weaponized against you? When do you get declined for health insurance, or have jacked up premiums, because the insurance company bought a report from 23andMe that says you have a predisposition to expensive disease? My DNA isn't a secret, but I don't yet feel comfortable voluntarily handing it over to be indexed by a for profit company that has little to no regulation over what they can do with it.
- efsavage 7y agoI think you mean "at what point in the future does your DNA get weaponized against everyone you're related to?" I have not done these services because while I would be comfortable accepting the consequences in my remaining years, I have no idea what that would mean downstream for my living relatives, especially my son.
- toomuchtodo 7y ago> When do you get declined for health insurance, or have jacked up premiums, because the insurance company bought a report from 23andMe that says you have a predisposition to expensive disease? US federal law prohibits this [1]. [1] https://ghr.nlm.nih.gov/primer/testing/discrimination https://ghr.nlm.nih.gov/primer/testing/discrimination
- Analemma_ 7y agoYou might start feeling differently when a new test is developed for existing genetic conditions that it turns out you have, and since your DNA is already public suddenly your health insurance premiums quintuple.
- cabaalis 7y agoAt least in the US, doing this would already be illegal. https://en.wikipedia.org/wiki/Genetic_Information_Nondiscrimination_Act https://en.wikipedia.org/wiki/Genetic_Information_Nondiscrim...
- Real_S 7y agoThis law has interesting loopholes. GINA does not apply to employers with fewer than 15 employees. It does not cover long-term care insurance, life insurance, or disability insurance, though some states have state laws that offer additional protections against genetic discrimination. More info at: https://www.genome.gov/about-genomics/policy-issues/Genetic-Discrimination https://www.genome.gov/about-genomics/policy-issues/Genetic-...
- dekhn 7y agoHealth insurers in the US are not allow to use this information in setting premiums. GINA is the law: https://www.genome.gov/about-genomics/policy-issues/Genetic-Discrimination https://www.genome.gov/about-genomics/policy-issues/Genetic-...
- clSTophEjUdRanu 7y agoAnd then the dreaded military industrial police state gestapo drone strike you for not having white enough DNA? This site is becoming insufferable with the paranoia worst-case-scenario circle jerking. I'm tired of hearing that the sky is falling because 23andme might profit from my DNA. Calm down.
- rainyMammoth 7y ago23AndMe is reusing the same model as Google with the extra advantage that people are naively ready to pay for it. They have the same privacy issues as Google and I would certainly never trust them with my DNA. I know it's easy enough to get access to it but I'm certainly not going to pay or volunteer to give it. That information is eventually going to get weaponized. What will happen once they manage to statistically correlate your DNA with your political beliefs for example? Or correlate your DNA with a profile that is more likely to buy specific products? Right now I see them doing the same thing that Google did 15 years ago. They are hyping consumers by pushing stories of curing rare diseases with the help of statistics. Similar to Google 15 years ago that pretended to make the world a better place by creating top technology. It is clear to me what the end goal is going to be though. 23AndMe CEO is the sister of Youtube CEO and ex-wife of Sergei Brin. Enough said, no thanks.
- Real_S 7y agoHere is a study on the genetics of political belief[0]. In summary, there is a large genetic component. [0] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4038932/ https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4038932/
- klipt 7y agoCausal or just correlation? It's easy to imagine spurious correlation. Eg Italian Catholic populations may be more right wing than British Protestant populations. But that doesn't mean it's Italian genes making then right wing.
- thrwn_frthr_awy 7y agoI think most people like the idea of getting their DNA analyzed and used to better the world. Where this breaks down for myself (and I assume others as well) is that all this is being done by an ad company. I could be just an old, jaded engineer, but I don't expect anything altruistic from an ad company.
- clSTophEjUdRanu 7y agoI agree. Your genetic code doesn't define you and I don't see it as private and to be protected. You leave it everywhere you go.
- neonate 7y agohttp://archive.md/5Ypmm http://archive.md/5Ypmm
- buboard 7y agothat's great. i wonder if we get special discounts for literally being lab animals
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- starpilot 7y agohttps://www.vocabulary.com/articles/chooseyourwords/figuratively-literally/ https://www.vocabulary.com/articles/chooseyourwords/figurati...
- shooner 7y agohttps://www.merriam-webster.com/dictionary/literally https://www.merriam-webster.com/dictionary/literally
- no_multitudes 7y agoI think they would qualify as literal lab animals in this case... "laboratory animals (also referred to as animals) are generally defined as any vertebrate animal (i.e., traditional laboratory animals, agricultural animals, wildlife, and aquatic species) produced for or used in research, testing, or teaching. " https://www.ncbi.nlm.nih.gov/books/NBK54054/ https://www.ncbi.nlm.nih.gov/books/NBK54054/
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- Hasz 7y agoWhat a excellent, albeit strange, model. People pay you to analyze their valuable info, which you then aggregate and use to develop a drug and sell to others. It's almost exactly like trash -- people give you their valuable commodity (pay you to take it, in some cases!), you put it in a pile and then sell the mining rights down the line. If my data is going to be used to develop drug royalties, I want a % cut. Not a free test, certainly not a test that costs $100. I realize I will never get it, but I can hope. Drugs, when you analyze the successes, are unfathomably profitable. The R&D is horrifically expensive, but the end product is immensely valuable. 23andMe is in a bit of a race to pick all the easy fruit from the genetic tree to develop into drugs. All the upside, a much easier R&D path compared to the conventional "throw shit at the wall until it sticks" style.
- toomuchtodo 7y agoIt's really not that strange. No different than people paying $40k-$130k for Tesla vehicles that send data back with no compensation to help them improve their autonomy efforts, or users of social media products giving their content away for free (Facebook, Insta, Twitter, Reddit) thereby creating the platform's value. Lots of good business to be had taking something of little value and then selling for a greater value in some larger aggregate (which is even as low tech as your local metal recycling business; you want a cut of the revenue from the aircraft your aluminum ends up in?). The consumer benefit is that it's only $100-200 for a 23andme selective sequence, versus the $1000 for a full sequencing someone like Veritas charges. It's brilliant that 23andme can turn health and ancestry curiosity into a pharma business, and they should be commended for their work.
- Hasz 7y agoYeah, don't really like that either. At least with the other services, the user arguably sees an improvement -- better community, better car, whatever. Your genetics are what they are; I doubt (but might be wrong!) 23andMe is sending out free drugs to all the participants. I'm not sure how Veritas does it, but 23andMe only takes a few of the 600K SNPs available to analyze. PBS had a good bit on it, you can find it on YouTube. They release your raw data, but make no guarantee of accuracy, which is crazy considering some people take drastic, irreversible medical action (double mastectomy, hysterectomy for the BRCA mutation) based on the results. I'm sure they disclaim that, but crazy nonetheless.
- LinuxBender 7y agoSomewhat off topic: Has anyone yet made a device that is entirely self contained and can do a basic analysis of DNA without sending or fetching data from anywhere? In other words, 100% air-gapped and my DNA and data stay on the portable device. If not, approx. how many years until such a device might exist?
- chrisamiller 7y agoUnfortunately, there still is no such thing as "basic" analysis of DNA. :)Ewan Birney has a great quote about this: Sequencing, analysing and interpreting genomes is ‘routine’ in the same way the US Navy ‘routinely’ lands planes on aircraft carriers. It might happen regularly by well trained crew with the right equipment but it is not an easy thing to do. https://twitter.com/ewanbirney/status/1040144488948281344 https://twitter.com/ewanbirney/status/1040144488948281344 That said, an Oxford Nanopore sequencer + a laptop is probably the closest thing to what you want.
- LinuxBender 7y agoThis is actually promising. Obviously my mental comparison is not appropriate, but I recall diagnostic equipment for vehicles that cost $500k+ and took up a half of a bay in the shop. Now I can do the same diagnostics with a hand-held device that is $95. That was a 20 year gap. If the same evolution occurs with genetic equipment, it will meet my needs. In 15 to 20 years, I want to acquire a copy of Dr. Sinclairs work on the yamanaka factors and reversing cell age. I will need equipment to see DNA, epigenetic methylation and more.
- Beefin 7y agoNot possible. The library of SNPs is too large and growing by the day. Source, I made a gene analyzer: https://github.com/esteininger/Genetic-Report-Tool https://github.com/esteininger/Genetic-Report-Tool
- rckoepke 7y agoSeems like something that will happen eventually in the next decade or three. I can imagine a business model where instead of collecting a vial of saliva, a company rents you a fully automated desktop DNA sequencer. The data can live on your computer and be compared to new SNP's as they are found. It's a long way off, and I understand full sequencing is significantly more difficult than SNP identification, but the tech seems possible, even probably. The business model seems less probable. People just don't care that much about their data. Also, it doesn't matter due to network effects. In the GEDmatch case, the serial killer had never had his DNA sequenced - just his relatives. DNA privacy is already gone even if you opt-out of everything. You might as well get some personal benefit out of it. Or maybe this is a perverse opposite of vaccination. If enough people get vaccinated, you get herd immunity. If enough people stop sending data to DNA companies, you get herd privacy. Once enough people in one generation send in for DNA tests, even if everyone stopped, wouldn't future generations still be relatively targetable? I mean I'd imagine you could find me by comparing to my grandparents DNA.
- mrfusion 7y agoI’m not understanding how snp datasets created this drug?