23 ms·

Drugmakers are set to pay 23andMe to access consumer DNA

• amacalac 3y ago
  Insert <This is fine> meme here
• ddmma 3y ago
  Billions at least
• daoboy 3y ago
  https://archive.ph/CeLJZ https://archive.ph/CeLJZ "Any discoveries GSK makes with the 23andMe data will now be solely owned by the British pharmaceutical giant, while the genetic-testing company will be eligible for royalties on some projects."
  • graphe 3y ago
    No different from the sample of cancer they got from cell lines. After all, Steve jobs father only contributed DNA data, he isn't going to receive royalties or any benefits from his genetic data's activity.
• 26fingies 3y ago
  You know what would be fun? If we could see where all of our ancestors were from… - Police arrest my cousin for getting a paper cut during a home robbery - Hackers sell my DNA on the internet - Drugmakers make new and exciting opiates that are especially addictive for me alone
  • Obscurity4340 3y ago
    I wish more people did this. Examples rule
  • dr-detroit 3y ago
    [dead]
  • fred_is_fred 3y ago
    How difficult would it be with 2023 technology to produce DNA trace evidence for someone else given the sequenced information in these systems? Is there enough information there to do that, and if so, what are the technology hurdles?
    • jacquesm 3y ago
      23andMe has - fortunately, and to the best of my knowledge - not done any whole genome sequencing, they have made 'prints' ('Genotypes') that can be used to identify a person, but can't be used to re-sequence the DNA. That said: they do have your samples and there is a chance that they have made full sequences of select samples. But whole genome sequencing is still expensive enough that they would not be able to do this today. But given a few years advances in readers and someone with access to the samples could re-run all of them and obtain full sequences for their whole sample inventory.
      • dekhn 3y ago
        They did WGS for a research project. BUt it's not part of their normal product line.
      • fred_is_fred 3y ago
        Am I right that sequencing the DNA is one thing but manufacturing or copying? that DNA to produce enough to falsify evidence would be much more difficult - in a Gattica type scenario?
  • RocketOne 3y ago
    I'd go all in on the most nefarious - hacked data could be used to design a virus that only kills people with one particular genetic trait. I'm pretty sure there's an uber dystopian horror movie in there somewhere.
    • Centigonal 3y ago
      There's a dystopian sci-fi tactical espionage action game (from 1998!) that features exactly this https://www.youtube.com/watch?v=oTjI2LV0Tus&t=56 https://www.youtube.com/watch?v=oTjI2LV0Tus&t=56
      • RocketOne 3y ago
        Ah. Its nice to know my worst nightmare has already been in a video game from 25 years ago. I guess I'll just go outside and stare at squirrels for awhile.
    • alistairSH 3y ago
      The Silo series of books was based around a similar plot device. https://en.m.wikipedia.org/wiki/Silo_(series) https://en.m.wikipedia.org/wiki/Silo_(series)
    • heavyset_go 3y ago
      This isn't even dystopian sci-fi, nations already investigate bioweapons that are designed to target only certain racial groups.
      • dekhn 3y ago
        Do you have a credible source for this claim?
        • heavyset_go 3y ago
          - https://www.armyupress.army.mil/Journals/Military-Review/Directors-Select-Articles/Ethnic-Weapons/ https://www.armyupress.army.mil/Journals/Military-Review/Dir... - https://www.nationalreview.com/corner/the-coming-threat-of-a-genetically-engineered-ethnic-bioweapon/ https://www.nationalreview.com/corner/the-coming-threat-of-a... There's also an outline with references here: https://en.wikipedia.org/wiki/Ethnic_bioweapon https://en.wikipedia.org/wiki/Ethnic_bioweapon
  • hirvi74 3y ago
    > You know what would be fun? If we could see where all of our ancestors were from That is the part I could never understand. Maybe I have jumped to too many conclusions in my past. So, you send your DNA and your results say you are 25% Irish or whatever broad "Northwestern European" category you are lumped into. Okay, cool. . . But that does really make you "Irish" like someone that was born and raised in Ireland? Someone who grew up immersed in the culture, history, languages, etc.? Go tell someone from Ireland that you took a DNA test and that you are part Irish. I guarantee they would not care, probably hear it all the time from Americans, and would not think of you as one of them. Another aspect about ancestry that has always bothered me is that I feel like it's a socially acceptable version of Nationalism-lite/Racism-lite. "I am proud to be of Italian descent!" Why? Do you think Italians are better than other people? You didn't do anything to earn your heritage, and sure, Italians -- like all cultures -- have made wonderful contributions to humanity, but those contributions were more than likely due to their culture and resources vs. the DNA in their cells. "Wow! I two of my grandparents from 5 generations ago were German" Cool, except Germany was only established in 1867, so they probably were Germanic people, but not "German" like one thinks. After all, countries are just lines on a map. Lastly, aren't all people with European ancestry related by at least one common ancestor if you go back like 500-1000 years? I think if you go back like 2000 years or something, everyone on Earth shares at least one common ancestor. So, regardless of what the DNA tests say about your ancestor 4x generations back or however far back they go, we're all related anyway, and maybe we should start acting like that towards one another. Seriously, what's the appeal to these tests? I can understand health information slightly more, but couldn't a hospital do that for you?
• karaterobot 3y ago
  https://archive.ph/CeLJZ https://archive.ph/CeLJZ After reading the article, it looks to me like giving access to this data is not what's new, it's that the contractual terms of the existing agreement have changed. That is, it seems like 23AndMe already gives access of some form to pharmaceutical research companies. Two questions I had: * I'm vaguely familiar with the challenges of anonymizing omics data, and I'm wondering how they expect to make someone's entire genetic profile sufficiently anonymous or deidentified. All I've seen from them is one of their example reports, and you could take the name off one of those, and it seems like it would still be pretty easy to reidentify the subject just from that high level report, let alone from the raw data. * When they say these are users who have opted in to data sharing, I wonder what form that actually takes. Is this one of those things where everybody who uses 23AndMe is opting in? Did these 14 million users all actually provide informed, active consent? I assume that to maximize the value of that data, 23AndMe is incentivized to interpret consent as broadly (and vaguely) as possible.
  • ghayes 3y ago
    My biggest concern is that my siblings and parents have all signed up. So (more or less) my DNA is in this database, even though I have never interacted with the organization.
    • jacquesm 3y ago
      Yes, I wrote about that when this all first started happening. Not that anybody cared... it doesn't take a whole lot to be able to identify you given some samples of your extended family. And as a means of elimination it will be extremely effective. Gattaca is an amazing movie, it has aged so well I find myself having more and more appreciation for the amount of thought that went into the script.
      • maxerickson 3y ago
        Gattaca is about the senselessness of the dystopia, not the inevitability of it!
• cwales95 3y ago
  This is precisely why I will never use one of these services. The thought of a company being able to buy my DNA is beyond creepy.
  • tspike 3y ago
    Sadly, if your relatives are anything like mine, they have probably already made the decision for you.
    • digging 3y ago
      Just like letting people store your phone number in their contacts list... the only way to actually stay away from some of the most invasive companies is to live in isolation.
• dotcoma 3y ago
  In accordance to the promise they made to their customers, or in clear violation of it ?
• jacquesm 3y ago
  Who ever did not see this one coming when 23andMe launched was asleep at the switch. DNA databases are ripe for abuse and this is just another form of abuse. First they get you to pay to give them your samples and then they get paid again to pass your data to other parties without obtaining your specific consent for that transfer. When 23andMe launched I was absolutely amazed at how HN and less technical audiences ran with it, the abuse potential - and that's before we get into 'hacker lifted your sequences or prints' - was blatantly obvious.
  • donohoe 3y ago
    Exactly this. Which is why I never used these services. The disappointment and betrayal is inevitable.
    • RocketOne 3y ago
      Even worse though, is that it doesnt even have to be you submitting your data. Several killers have been caught because their family members have submitted DNA and the killers have been tracked down using DNA ancestry. It really sucks, because it only takes one gullible person to really expose your family to data mining.
      • User23 3y ago
        If you were born in a hospital your DNA is already collected[1]. You may as well benefit from it too. Also, bringing murderers to justice is a pretty odd thing to object to. [1] https://www.aclu.org/documents/newborn-dna-banking https://www.aclu.org/documents/newborn-dna-banking
        • alistairSH 3y ago
          Two wrongs don’t make a right. I object to non-consensual collection of newborn DNA as well. And it’s not bringing murderers to justice per se. It’s the implications to others. I don’t want MegaCorp extrapolating my medical history via my cousin’s DNA.
        • 3y ago
• puzzledobserver 3y ago
  About ten years ago, I sent a sample of my saliva to 23andMe. It was only later that I realized the privacy implications of what I'd done, and asked them to forget my data and deleted my account. Is there anything more I can do to protect myself at this point?
  • jacooper 3y ago
    Be awarez they will not remove your DNA data from their databases.
    • slekker 3y ago
      Even if I bought their kit in Europe? Does GDPR not apply?
    • keep_reading 3y ago
      Yes they will and they'll destroy your sample. I did this years ago when I deleted my account. It was very clear how to do this.
      • jacooper 3y ago
        Maybe that changed? https://www.reddit.com/r/23andme/comments/w6knxq/you_can_never_delete_your_personal_information/ https://www.reddit.com/r/23andme/comments/w6knxq/you_can_nev...
  • Minor49er 3y ago
    Maybe soon we'll see DNA Scrambling as a Service
  • digging 3y ago
    You could probably try to mount a legal fight if you've got the money and the time, because they probably didn't delete anything, and there's a chance doing so was illegal. But, it probably wasn't even illegal for them to ignore your request.
  • Timshel 3y ago
• chews 3y ago
  Merck was involved from day one. Very early in the database scraping they identified a cancer treatment based on data collected within the first year of operation. A company that helps drug company was always the plan.. they just needed that googol of human data.
• DoreenMichele 3y ago
  Bonus points: It's drugmakers. Our so-called "health care system" isn't about your health and welfare at all. We have a lot of chronic illness these days because treating you forever pays the bills, curing you does not. Are we sending this data to universities to research optimal nutrition for your genetic profile? Absolutely not. No money in helping you eat right and live better. Lots of money in poisoning you with their potions and blaming it on "your condition."
  • kulahan 3y ago
    I get what you're saying, but nutrition is probably not a great example because we know nearly nothing about it. It's not ok to lock someone in a room and force-feed them for years to get data. Anyways, that aside, what's insane to me is that there is a nearly-simultaneous story of the Opioid epidemic and people aren't losing their minds over this.
    • DoreenMichele 3y ago
      So we shouldn't research nutrition until we know more about it? (Insert Spock eyebrow because this concept fails to compute for me.)
      • kulahan 3y ago
        My point is you're putting the cart before the horse - you don't research individual genetic diets before you research generic diets
        • heavyset_go 3y ago
          It's possible to investigate whether diets produce beneficial results in subgroups even without having a proper general model of diet and nutrition. It's analogous to investigating whether drugs produce beneficial results in people with X disease even without having a proper model of how exactly X disease works.
        • DoreenMichele 3y ago
• light_hue_1 3y ago
  Everyone here has a negative take. Yet, when people post that cutting edge drugs might save their lives you all want drugmakers and the FDA to move faster. What is it? Do we want to save people's lives or not? This is critical data for developing new drugs. Keep in mind all of the people who did this, said they want their DNA to be used for research. If you didn't opt into that, you can still use 23andMe! But your DNA is never used. What's the problem here? I volunteered my DNA. And if there was a government scheme for people to do so that so that we can help advance medical science faster, I would sign up tomorrow. Do you want to live longer? Find a cure for your grandparent's cancer? Find a cure for multiple sclerosis? Find genetic markers for autism? etc. All of these require data. The hypocrisy and knee jerk reaction on HN about these issues is astounding.
  • digging 3y ago
    You can look through posters' comment history, you know. Come back when you've found one person who's actually making both of those arguments instead of fighting this strawman.
• underseacables 3y ago
  Granted, it's not much, but I did this under an assumed name and declined to allow them to keep the sample. I think it's good that the DNA is being used for science, I just hope I can keep some privacy from it.
  • heavyset_go 3y ago
    If your family sends in their DNA, they'll de-anonymize you, unfortunately.
    • underseacables 3y ago
      I take your point, but the only family I have is my wife and children. My entire lineage has weathered on the vine from everyone dying and not having children. Outside of that my nearest relative is a second cousin once removed. I'm in a unique situation, but I take your point that it could still be identified down the line.
• happytiger 3y ago
  We bought their kits but after reading their terms and conditions never used them. It was clearly a land grab. Hardly matters as close relatives did it anyways. We need a privacy bill of rights that keeps companies from using our very DNA like this in the first place. without a strong legal framework, misuse is inevitable. Also, consider that much genetic information about an entire lineage is revealed by one person opting in for the entire lineage. This has implications beyond one persons choice, and those implications are long reaching and will become increasingly economically impactful as technology matures. Is it morally correct that companies can know tons of genetic information about people who never opted in merely because they share DNA with one that does? It’s not handled in the T&Cs that’s for sure. Not has 23andMe ever addressed it.
  • graphe 3y ago
    Why? People choose to upload their data if they want to. If by 'stealing' you mean your voluntary upload and not reading the TOS it's hard to have sympathy. Most people CHOOSE to upload their data to private databases to get more info since the us government is rather conservative with their databases and it's not HIPAA either.
    • happytiger 3y ago
      Because companies incentivize behavior and pushing all responsibility onto the end use for predatory business practices is very outdated thinking. You can choose not to have credit but without credit you can’t really fully participate in the financial system, but a home or a car, rent an apartment, etc. But it’s a choice to participate. You buy a computer it’s not really a choice to accept the OS terms and conditions. Not if you want to use the computer. Many things masquerading as choices are not a choice really, though people pretend they are. We don’t need sympathy, we need ironclad data protection for users who do care even if others do not. The illusion that consumers can make a choice on many of these products and data agreements is a useful fiction that benefits companies and is often subverted to unfairly benefit just one of the parties: the current system is frequently a predatory exchange by companies designed to incentivize behavior that benefits them under the illusion of choice. Having seen data brokerages in great depth I can tell you the amount of information and type of information collected it hardly being done benevolently, and it always seems to go right to the edge of legality and morality in terms of what can be collected. Most importantly unless you are working deeply with the datasets it’s hard to understand just how profoundly powerful recombined data can be. So while users are offering approval to collection of data on a data platform basis the recombination of data is almost never explicit and has far reaching implications most people cannot really fathom. Recombination of released data is never presented to users in this way, as each company contributes their part and looks benign in isolated agreements, but they are not. Particularly not in the age of AI. In addition data is durable long after that company and their aligned business model is defunct. Yet there is no opt in for continued use even if the data goes to a use that would be objected to by the original grantor. This is deeply problematic. To call that a “choice” to release information is farcical under the current system. Beyond dark pattern in gaining the data, endurance beyond intention, unintended use and irrevocability are deeply, deeply problematic issues. Respectfully, they “agreed” is a weak argument given the complexity of the modern paradigm.
• heavyset_go 3y ago
  Yet another example of individual customers not being companies' real clients. As long as there are organizations willing to pay millions/billions for a company's customers' data, that data will eventually be sold/licensed/shared/etc to them. Companies would be leaving money on the table otherwise, and shareholders won't have that.
• catchnear4321 3y ago
  it’s fine, gsk should be more than happy to sell me back some organs some day, or some clinical immortality, or something. probably. what’s the point if there’s not more money to be made? in perpetuity? from me? there will be a loyalty program. it’s fine.
• anm89 3y ago
  This shit really pisses me off because my brother did 23 and me which pretty much means my data is in there without consent.
• j7ake 3y ago
  Is there any company that offers your DNA to be sequenced but will promise to just give you back the raw data (or aligned to genome) without storing or selling it to companies?
  • rocketbop 3y ago
    Even if there were, it’s a lot to give away based on a promise.
    • j7ake 3y ago
      It’s a start up opportunity. There are ways to make privacy guarantees in the protocol by proper barcoding and encryption.
• DoingIsLearning 3y ago
  Is there any form of GDPR data takeout/deletion request for European services of genetic sequencing? I unfortunately had a close family member go down this route because he "was curious".
• GalaxyNova 3y ago
  I don't know why people think that DNA is so personal and private. it's the equivalent of IP addresses for biological beings.
  • fxtentacle 3y ago
    Because insurances can use DNA knowledge as a justification for charging you more. If having the wrong IP address costs $1k extra per month, but only of other people know, then you'd also be more careful about keeping it a secret.
    • bossyTeacher 3y ago
      This! Shocking that the usually privacy-aware, sciency, smart HN crowd is struggling to grasp such a simple concept
    • polski-g 3y ago
      > Because insurances can use DNA knowledge as a justification for charging you more In America they cannot. This is forbidden by law. ... But they should be allowed to, you are more risky to insure. Just like under 25-yo's are more prone to accidents; or coastal houses are more prone to flooding.
  • 2rsf 3y ago
    Isn't it more like your apartment and specific renovations plans?
  • tgv 3y ago
    Can you address me by my DNA? Even so: processing IP-addresses is not allowed in general, in the EU at least. You need permission or a specific, allowed goal.
    • rsaxvc 3y ago
      To continue the analogy: probably, you're just not on the right subnet. In the US many states collect DNA samples at birth, as well as for citizens born abroad.
• RadixDLT 3y ago
  haha feel sorry for everyone who paid, these assholes are doubling down and screwing their customers even more
• sparrowInHand 3y ago
  ? Drugmakers are not the problem. Insurrance is. The bad teeth everyone has in the family? Uninsurable for all your descendants. The mental problems some developed? No coverage of that in life-insurrance - forever for all descendants carrying the genes. More then average aggression as a teenager? Presume your kids on some invisible watchlist. You are already living in a invisible Gattaca.
  • prepend 3y ago
    In the US it’s illegal to use dna data for health insurance [0], or employment. So if insurance is using this data it could be pretty rough for the insurers and 23andme. [0] https://en.wikipedia.org/wiki/Genetic_Information_Nondiscrimination_Act https://en.wikipedia.org/wiki/Genetic_Information_Nondiscrim...
    • asne11 3y ago
      does legality of a thing prevent big pharma from doing the thing?
      • marcinzm 3y ago
        Pharma is not insurance.
      • koheripbal 3y ago
        Big pharma does not run insurance
      • prepend 3y ago
        This law is unrelated to big pharma, but I think the answer is “yes, but pharma follows the law.” Or at least the law as they interpret it. Look at the opioid madness and even with that, I think big pharma was being Lawful Evil. Once the law is determined, I think they follow it. Even though they lobby to change it.
      • YetAnotherNick 3y ago
        Insurance companies could directly ask for DNA if they don't care about legality. And in return they could easily offer say 90% discount to 90% of the people.
• deleted 3y ago
  [deleted]
• tiku 3y ago
  Over 80% has checked that their DNA can be used for these kind of cases. So what is the problem, except for people not reading or caring?
  • diggan 3y ago
    How was that agreement collected? Was in similar to how OpenAI gets consent to use your data for further training, in that they disable certain unrelated features if you don't give consent, or was it unconditional?
    • maronato 3y ago
      It’s very explicit and can be revoked
      • diggan 3y ago
        You happen to know the exact wording and the location of the checkbox?
        • ezfe 3y ago
          23andMe website > settings > Research & Product Consents. There are three options: - Research Consent Document: Allow 23andMe researchers to use your genetic information to study a variety of topics, stripped of name and contact information and aggregated. May involve 3rd party collaborations including non-profits, pharmaceutical companies, and academic institutions. Results of research may be shared publicly. - Health Records Project: Connect your data to your healthcare providers using "Human API" - Individual Data Sharing: This is a supplement of the first one and includes additional data points, most of which come from interacting with the website. This information is available directly on the page I referenced, not hidden in a ToS document.
          • diggan 3y ago
            Thanks! So none of those are checked by default and the user has to manually go to "Settings" and then "Consents"? If that's the case, I don't see what the issue is, people really gave them the consent to do what they're doing now.
• spandextwins 3y ago
  At least they aren't trying to hide it anymore.
• cinntaile 3y ago
  This has been their plan all along and 23andMe didn't hide that so I don't see the problem.
• black_13 3y ago
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• snappyc 3y ago
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• snappyc 3y ago
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  • Dachande663 3y ago
    This reads like a scam targetting people who have been scammed. Indeed, the posters only other comment is an exact copy of this message.
  • maronato 3y ago
    This reads like a scam itself
• jvanderbot 3y ago
  Imagine a nationwide US gov research program that collects DNA for the purposes of prescription drug research. They'd be storming the capital again, no matter how much good it can do. Now imagine we had to raise taxes to support it. Preposterous! Communism! Instead a company was founded on the promise of providing a useful product to both consumers and producers. Let them get rich, I'm pretty sure this is a net win for all parties.
  • white_dragon88 3y ago
    [dead]
  • diggan 3y ago
    > Imagine a nationwide US gov research program that collects DNA for the purposes of prescription drug research. It's not unprecedented in other parts of the world. Almost every single person born after 1975 in Sweden is a part of the PKU-registry whose usage is encoded in Swedish law: > On July 1, 2023, a new Biobank Act came into force (Act 2023:38). The Act specifies the purposes for which PKU samples may be stored: medical care and diagnostics, epidemiological studies, monitoring and quality assurance of operations, and clinical research and development. The promise was always that police would never be able to use it for lookups. Unsurprisingly, the police has been trying to get access to it since inception. I'm not sure how useful it's been though, I don't think I've come across anything major that has been solved via the registry, but then I'm not heavily in biology and related areas, so maybe that's just my ignorance.
    • jvanderbot 3y ago
      I agree wholeheartedly that other countries have implemented programs and general laws that the US should do, but am leaning on the general US sentiment that we're somehow different and should do everything (seemingly) the hard way. In this case, however, 23andMe seems like the "easy way" since it's paying for itself and is opt-in.
  • ImaCake 3y ago
    The USA does have a publicly funded genetic biobank mostly of US veterans. Its somewhat notorious in the research community for being difficult to gain access to. The UK biobank or the myriad other national biobanks are generally pay to use for researchers and are anonymous.
• vitalurk 3y ago
  This was 5yrs ago: https://www.youtube.com/watch?v=HKQDSgBHPfY https://www.youtube.com/watch?v=HKQDSgBHPfY We should start caring about stuff.
• _ink_ 3y ago
  I would really like to get my DNA analised. Mostly to see what deseases I might be prone to get. Obviously 23andMe cannot be trusted. Is there a more privacy focused provider? Ideally who just gives me the result and then deletes my data?
  • y0ink 3y ago
    This might be worth checking out, although it seems there are no guarantees when you're dealing with DNA: https://www.dnasquirrel.com/how-to-protect-your-genetic-privacy-anonymous-23andme-ancestry/ https://www.dnasquirrel.com/how-to-protect-your-genetic-priv...
• alexpotato 3y ago
  Just a reminder that there is a Genetic Information Non Discrimination Act: https://en.wikipedia.org/wiki/Genetic_Information_Nondiscrimination_Act https://en.wikipedia.org/wiki/Genetic_Information_Nondiscrim... AND it was passed with a Republican president and with essentially unanimous votes. "In 2008, on April 24 H.R. 493 passed the Senate 95-0. The bill was then sent back to the House of Representatives and passed 414-1 on May 1; the lone dissenter was Congressman Ron Paul.[5] President George W. Bush signed the bill into law on May 21, 2008.[6][7]"
• rzwitserloot 3y ago
  I assume in the smallprint when you got 23andMe to do a DNA analysis of you, it said that you give them the right to do this. One of those times where reading that small print realllllllllly was important. And anybody who signed it presumably didn't actually understand what they were signing away there. I'm not a lawyer, but if I'm 23andMe, and I get sued in the USA that there was no actual meeting of the minds here, and that they don't really have consent regardless of that smallprint, I'd not be all too confident I'd win that case (I wouldn't be confident it's a total loser of a case either; the users _did_ sign, after all). Same situation in the EU and I'd be even less confident. Hypothetically pushed scenario: A smallprint / clickthrough / 'you accept by tearing this sticker' style licenses dictate you owe them $100000 and a kidney if you fail to review the product with the maximum possible score within 1 month of purchasing the product. You tear that sticker and fail to review in time. They come a-knockin, scalpel at the ready. There's zero chance you lose in court. That's not something you get to stick in a clickthrough contract. No meeting of the minds would be the legal basis. Hence why I wonder: Will 'you signed away your rights; we now get to sell your DNA profile' actually hold up?
• mchusma 3y ago
  I think US law has it backward, and health data should be publicly accessible by default, and very easy to share with researchers. I care so much more about solving diseases and reducing costs than I do privacy. I think people underestimate the costs of privacy on both. Unwanted effects (like discriminating based on data) can be legislated separately. Once we are all effectively immortal, I think we can loop back around to the privacy thing. I did 23and Me years ago hoping my data would be used for research. I feel that privacy absolutists dominate the narrative, but given the choice of privacy, cost, and effective medicine…how many people really would choose privacy?
  • RyanAdamas 3y ago
    >Once we're all effectively immortal This is the lie sold to every generation's wealthy and powerful. The idea that our tech now is better than before and we're all going to live forever. I don't disagree that health data should be public, but so should all medical procedures and prescriptions. They should be covered by single-payer, too. That way no one has to worry about their ailments, but are also accountable to everyone else for the services they use and demand. The idea we're going to live a lot longer than other generations is a common one among those beginning to lose their youth who spend too much time in the science-will-save-us narrative.
  • kjkjadksj 3y ago
    Other countries like Iceland have excellent genomics projects in comparison. 2/3 of Icelandic adults are sequenced and these are made available to researchers. They have represented a very important control population for medical genomics for example, among many other excellent projects. https://en.wikipedia.org/wiki/DeCODE_genetics https://en.wikipedia.org/wiki/DeCODE_genetics
    • galleywest200 3y ago
      Iceland does this so that they do not produce offspring with someone too closely related to them.
• more_corn 3y ago
  They offer full account and data deletion. It’s in settings at the bottom. Just sayin.
• collyw 3y ago
  There is a surprise. Why would you give your data to these people?
  • polski-g 3y ago
    Because you want better drugs for humanity?
    • collyw 3y ago
      Can you point me to an example of that happening to date?
• noonething 3y ago
  What could someone do with your DNA? Make a disease that targets only you?
• m3kw9 3y ago
  Are they anonymized? Would think this is illegal even if users agreed to it which most would be unknowingly agreeing. Like agreeing to hand over your first born. If anonymized, are there issues? If it helps cure disease with anonymous dna, why not?
  • AlexandrB 3y ago
    How do you anonymize genetic data? It's intrinsically linked to you.
• nathias 3y ago
  good, I hope they can use them to make better drugs
• Jimmc414 3y ago
  To delete your 23andMe data, go to your account settings page and find the “Delete Your Data” option under “23andMe Data.” You can download any or all of your data before you destroy it.
• deleted 3y ago
  [deleted]
• krys1010 3y ago
  Gattaca is here.
• strangesmells02 3y ago
  > anonymized data to people who have agreed to submit for research Seems fine to me?
• eyeareque 3y ago
  Did anyone find the fine print on what you agree to when you use their service? I am not surprised whatsoever.
• jgalt212 3y ago
  Consent is an intellectually lazy framework. Far more often than we do so now, people need to decided ex-ante what is and what is not OK--consent or no consent be damned. 23andMe is 1MM Henrietta Lacks.
• sslayer 3y ago
  Isn't this PII that can't be scrubbed?
• notfish 3y ago
  Anecdotal, but I paid $300 to get a 30x coverage full human genome scan of myself from Nebula Genomics. Within 24 hours, before I had mustered up the courage to read my results, I started getting ads for early onset parkinsons meds. I’ll give you one guess what disease I happen to be extremely genetically predisposed to based on the results of the scan...
• motbus3 3y ago
  "Anonymised data" This is the same mumble jumble they used on the AI Vs artists case. It is only hard enough for general public to not understand what they are doing.
  • titanomachy 3y ago
    I think the usual phrase is “mumbo jumbo”?
• ternaus 3y ago
  I hope that my DNA was part of the sample that was sent to drugmakers. I do not see how it can negatively affect me as data is anonymized. At the same time if it will help to develop better drugs -> this is good thing for the humanity. If someone will make money in the process - 23andMe and drugmakers - this is great as it will incentivise other companies invest to similar research projects which, again, looks as a good outcome for the humanity. If information about my DNA will make a drug being more beneficial to people who share DNA with me - my relatives and I will benefit as well. win-win everywhere