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23andMe is out of bankruptcy and it still hasn’t substantially changed its ways
- jmole 1y agoIs there any intrinsic value whatsoever in the DNA or SNPs themselves? Or is it just the link between your name and your DNA that is so concerning? It seems like you could do lots of useful things without having a name attached to any particular sample. There must be some kind of differential privacy approach here that would work well.
- seanvelasco 1y agoi'm curious, what's the worst-case scenario if one were to put their whole DNA data exposed publicly? would a future civilization re-make your image? or are there societal benefits?
- wslh 1y agoClearly, one risk is that your DNA, or that of a close relative could be linked to a crime, even if you weren't directly involved.
- hammyhavoc 1y agoDNA isn’t guilt by association. Cops still need real evidence—this isn’t CSI fan fiction.
- a_bonobo 1y ago>Identification of DeAngelo began in December 2017 when officials, led by detective Paul Holes and FBI lawyer Steve Kramer, uploaded the killer's DNA profile from a Ventura County rape kit to the personal genomics website GEDmatch.[182] The website identified 10 to 20 people who had the same great-great-great-grandparents as the Golden State Killer; a team of five investigators working with genealogist Barbara Rae-Venter used this list to construct a large family tree.[183] From this tree, they established two suspects; one was ruled out by a relative's DNA test, leaving DeAngelo the main suspect.[184] >On April 18, 2018, a DNA sample was surreptitiously collected from the door handle of DeAngelo's car;[64] another sample was later collected from a tissue found in DeAngelo's curbside garbage can.[185] DNA as the guilt-by-association, they then will get the evidence. https://en.wikipedia.org/wiki/Joseph_James_DeAngelo#Arrest,_trial_and_incarceration https://en.wikipedia.org/wiki/Joseph_James_DeAngelo#Arrest,_...
- hammyhavoc 1y agoYou're describing the process working—DNA gave investigators a lead, which they followed up with legally obtained, direct evidence tying DeAngelo to the crime. That’s not guilt by association; that’s good policing. Framing that as something sinister ignores the outcome: a serial rapist and murderer finally faced justice. That’s not dystopia—it’s what society should be doing—or would you rather a rapist, kidnapper and murderer walked freely?
- kstrauser 1y agoFor example, long-term care, and disability insurance aren’t blocked at the federal level from discrimination based on DNA. If they suspect you might get bad arthritis some day, they can block you from insurance (barring state laws saying otherwise).
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- vpShane 1y agoThe worst case scenario would have already happened: your privacy being violated, and your info being in the hands of anybody or anything that wants to use it against you. as far as re-making you I think those like thiel and others are in to trans-humanism. so probably to help make the ultimate borg.
- chneu 1y agowhat's the best case scenario?
- vintermann 1y agoBest case scenario is that you can answer a ton of historical questions that you wouldn't have a chance to otherwise. I'm currently in the process of figuring out where my most distant known paternal-line ancestor came from. Took a Y-DNA test, found a very distant all-male line cousin who was open to taking a Y DNA test (because he had already taken one at 23andMe, I knew the odds were good that he would be OK with it - the 23andMe test also had enough Y information that I knew it was likely we both descended from the same man). His first results came in yesterday. In another couple of weeks, when his Y SNPs come in, we'll know which of my ~10 private mutations (ones no one else has been found to share) we have in common, which will in turn put better time estimates on our distance to other testers in our part of the Y-tree.
- newman8r 1y agoBest case scenario is it's used to identify unknown remains, or help locate a murder suspect who's probably distantly related to you (i.e. a 5th cousin you never met). More of these samples makes it harder for serial killers to stay hidden for too long.
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- sjw987 1y agoAll your DNA markers show that you have no markers for any adverse genetic conditions and can therefore have lower insurance rates if one of the worst case scenarios occurs (them selling data to health insurers). I did the 23andme thing years ago (foolishly or not, I found it interesting), and everything on there at the time and when I checked recently said I had no markers for anything. They are very pro-active in reminding you all over the app/website and for each condition they track that they only track a few markers so the results are obviously not really that predictive of anything, and that practicing a healthy lifestyle (whatever your genetic markers) is the most important thing to do.
- ashdksnndck 1y ago23andMe’s new business model (Anne Wojcicki and Regeneron both had the same plan for it) is to use the data for drug development. That’s theoretically where the $$$$ is. Turns out you can use statistical association between genes and other biomarkers to discover drugs that will succeed in clinical trials. So, I suppose, if everyone could use the data, everyone could use it to develop drugs, not just 23andMe. That’s good if you want more drugs to be developed and released… bad if you don’t.
- beaugunderson 1y agosomeone could synthesize your DNA and leave it a crime scene, to use an example popularized by the consent form of the Harvard Personal Genome Project.
- hirvi74 1y agoCan one even truly delete their DNA from 23andMe? Wouldn't deleting someone's DNA require deleting not only the existing record, but also the record from all historical back-ups too? What is to say 23andMe just doesn't flip a bit in their database and claim one's DNA is (soft) deleted?
- vintermann 1y agoWell, GDPR compliance is one thing. It could be very expensive if you have European customers and get caught doing this.
- FirmwareBurner 1y agoIf they don't have any offices or assets in Europe, then the EU can't do anything against them for breaking GDPR.
- chha 1y agoSure they can. GDPR article 2 (2) says: «This Regulation applies to the processing of personal data of data subjects who are in the Union by a controller or processor not established in the Union, where the processing activities are related to: (a) the offering of goods or services, irrespective of whether a payment of the data subject is required, to such data subjects in the Union;» So the GDPR applies. The EU can of course sanction violators outside, but given the current political climate it is likely to be more difficult than before.
- FirmwareBurner 1y ago>Sure they can. GDPR article 2 (2) says: No they can't. That says only about where the law applies, it doesn't say about prosecution of entities not residing in the EU. EU's legal arm can't extent outside the boarders of the EU, without an outright military invasion, it's toothless to foreign entities. >So the GDPR applies. I never said it doesn't apply. I said how is the EU gonna prosecute an entity that doesn't reside in the EU? Extraditions are tough to negotiate even for serious stuff like murder. No foreign judge will take GDPR violations seriously to do that.
- socalgal2 1y agoI signed up for 23andme to specifically make my DNA available. I believe that more DNA = more cures Note: I'm not saying you should not delete your DNA. Do what you want over course. I'm just saying for me, I signed up, fully expected my DNA to be used to conduct research. That fact that I could get interesting graphs and some health info was just a bonus for me
- PaulHoule 1y agoWhen people say "data is the new oil", I think https://en.wikipedia.org/wiki/Exxon_Valdez_oil_spill https://en.wikipedia.org/wiki/Exxon_Valdez_oil_spill Is the best way to hasten the next bankruptcy to not delete your data?
- ulfw 1y agoDeleted it years ago. Don't trust any of them to actually have deleted it.
- ks2048 1y agoI do worry about my data with them, but when I think about the worst-case scenario - you will not get insured (or have high rates) because you have {some genetic condition}.. it seems just as likely that they will simply require my DNA to apply for insurance. (or get my DNA from a blood test within their system, etc.). The obvious solution is with legislation for transparency and better health care system.
- echelon 1y ago> you will not get insured (or have high rates) because you have {some genetic condition}.. s/insured/hired Wait until we have DNA detectors wired up to collect the DNA we exhale and rapid sequencers that handle what might be below the limit of detection today. Maybe that's fifty years down the road, but it's coming. Gattaca was a prescient premonition, it was just a hundred years ahead of its time.
- ks2048 1y agoYes, I can imagine those dystopias - my point was that I don't imagine my choice to try 23andMe in 2019 is what dooms me - while others are saved by not making that choice.
- jraph 1y agoI kind of understand your point, now my view would be that it should not be a reason not to delete the data from them, in case it actually helps. Otherwise: 1. Why take the chance? 2. Your DNA being out in the wild also impacts the privacy of your relatives (including those you might not know, and those who don't exist yet (a child, a nephew, a niece for instance)), so if not for you, do it for them. It won't be a guarantee, but it maximizes the chances.
- vintermann 1y agoWhy take the chance? Because genealogical data is valuable to you, of course. If it isn't, no amount of legal or technical security will make it worth it. I do think that the health stuff from 23andMe is only marginally better than astrology, that the ethnicity estimates are inferior to what most people can get from good old fashioned genealogy, but that the matching may be useful, if you value knowing who you're related to a lot.
- barisozmen 1y agoI started doing a relevant project https://github.com/barisozmen/securegenomics https://github.com/barisozmen/securegenomics . Because I believe 23andMe event will result in people to be more wary of sharing their genetic data, and we need ways to make people able to contribute in genetic research without exposing their data.
- jraph 1y agoIn what you show, people encrypt their genome before uploading data on some server, and then scientists can work on the data. How are scientists able to work on encrypted genomes?
- vintermann 1y agoHomomorphic encryption, presumably? It's not impossible. But I also think it's overkill. Also, I don't know of good open source software that lets me do the kind of analysis I want even on non-encrypted data.
- jraph 1y ago> Homomorphic encryption, presumably? That would not be very comforting, this would mean that even encrypted, we can know stuff from the encrypted form, which kinds of defeat the purpose unless I'm missing something.
- barisozmen 1y agoYes, it's by homomorphic encryption as @vintermann mentioned. That being said, scientists can implement their own protocols, and use whatever technique they want. For example: https://github.com/securegenomics/protocol-alzheimers-sensitive-allele-frequency https://github.com/securegenomics/protocol-alzheimers-sensit.... It's that our platform makes federated computing + homomorphic encryption analysis easy, but protocols are customizable.
- kazinator 1y agoThe idea that someone who cares about their personal data should happily give it to a company as long as they are not near bankruptcy is absurd.
- mgh2 1y agohttps://archive.is/7i4GP https://archive.is/7i4GP
- ProAm 1y agoNow that they have been 'sold and bought' I dont believe any of the contractual agreements have to be kept. And since the old CEO just bought the company I can only imagine the worse in terms of data to sell.
- anothernewdude 1y agoBe careful not to delete all your DNA if you're still alive and using it.
- CITIZENDOT 1y agoWhy not? Elaborate
- 7734128 1y agoIt's quite hazardous to your health to all of a sudden lack any DNA. Your cells won't know how to replicate for one.
- gattr 1y agoYou could always restore from incidental backups (hairbrush, etc.).
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- lion__93332 1y agoThat feels really risky. If your DNA is preserved, could a replica of you appear decades later?
- vintermann 1y agoWell, a 23andMe v5 test looks at approximately 640000 locations on your genome, out of approximately 3 billion. So they have to use a lot of "frog DNA" to fill out the rest.
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