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This is why I’ve been putting off getting my genome sequenced. One breach and it’s out there forever. I’ve heard good things about nebula[0] as a way to get an

• cblconfederate 6y ago
  If you were putting off 23andme in 2009 you would miss out on their health reports (they have banned since). If you were putting off whole genome sequencing last year, it will be banned by next year. I m afraid it works the opposite: early adopters take risks and reap some rewards , late adopters are being played by regulators, spying govts and scammers.
• KMag 6y ago
  Pseudononymously getting yourself sequenced is the way to go, but if enough relatives have their genes leaked under their real names, piecing together family trees isn't difficult. One half-hearted option is to order a kit "as a gift" from one of the major sites and register it under a pseudonym. You're taking a risk that they're not keeping track of which kit serial number is shipped to which shipping address, and hoping the timing of the order can't be too easily correlated with the serial number.
• vmception 6y ago
  surely enough of your cousins did that it doesn't matter
  • vimax 6y ago
    What a bullshit argument. Can't have complete security so might as well have no security. You're cousins genome, no matter how close, is not your genome. Why make it easier on those surveiling us?
    • vmception 6y ago
      I dont mean they should do it, I am saying their protest is in vain... because that is a factual reality. The security ship has sailed, this is the Black Mirror episode.
• est31 6y ago
  It's kinda sad that the genome sequencing machines need to be fed loads of genomes in order to offer cheap prices for customers. You can't just buy one for home then use it a couple of times to sequence your family. That'd be most privacy preserving, but the fabled 1k whole genome prices are (currently) only available in high throghput machines. OTOH it's also better because that reduces the nonconsensual sequencing.
  • HenryKissinger 6y ago
    The federal government could maintain a central database containing the DNA of every citizen. Submitting a sample might be incentivized by barring people from, say, receiving social security, disability, government backed mortgages and student loans, food stamps, tax refunds, and other federal benefits if someone doesn't comply. The National Institutes of Health, the Centers for Disease Control, the Central Intelligence Agency, the National Security Agency, the FBI, DEA (Drug Enforcement Agency), ATF (Alcohol, Tobacco, and Firearms), ICE, CBP, and DHS (Department of Homeland Security) could then mine the database for insights into disease, epidemics, crime, intelligence, and so many other purposes. Just imagine the possibilities.
    • tossmeout 6y ago
      In a perfect world, sure, but in the real world this would obviously be ripe for misuse. Hard to tell if you're being serious or not.
    • deleted 6y ago
      [deleted]
    • bergstromm466 6y ago
      Why would DNA have anything to do with crime?
      • throwawaythekey 6y ago
        I am not an expect, but it seems like DNA is responsible for around 50% of the personality variance between individuals. Note that the variance within groups is an order of magnitude bigger than the variance across groups, so there aren't super strong ties to race. I would imagine personality and/or propensity to mental illness or addiction are decent predictors of likelihood to commit crime. See this podcast for an actual experts take https://samharris.org/podcasts/211-the-nature-of-human-nature/ https://samharris.org/podcasts/211-the-nature-of-human-natur...
• anderspitman 6y ago
  Nebula is definitely an interesting entry into the market. There's also Dante Labs[0], which often offers 30x whole genome in the 200-300USD range. You can download all your raw data (including FASTQs, h37-aligned BAMs, and VCFs) from AWS. There are some quality concerns (and they use BGI instead of Illumina sequencers), but at that price it's tempting to do Dante and Nebula as a check on each other. Dante also has what seems like a pretty good privacy policy, including an option to destroy your saliva sample and delete all your data[1]. Obviously you still have to trust them, but it's a step in the right direction. There's a good Facebook group for customers of both Dante and Nebula[2]. [0]: https://www.dantelabs.com/ https://www.dantelabs.com/ [1]: https://us.dantelabs.com/pages/privacy-policy https://us.dantelabs.com/pages/privacy-policy [2]: https://www.facebook.com/groups/373644229897409/ https://www.facebook.com/groups/373644229897409/
  • kbenson 6y ago
    > including an option to destroy your saliva sample Until I read that sentence, it honestly never occurred to me they would keep that around. The data, sure. Biological samples? I just assumed they would be disposed of after use.
    • andrewem 6y ago
      A sample can be used for multiple analyses. For instance, a customer might pay for autosomal DNA analysis and later want to pay extra for mitochondrial DNA analysis. If the sample has been destroyed, no problem just send in a new sample - unless the subject has died in the meantime.
    • FreeTrade 6y ago
      Collect it all.
      • philsnow 6y ago
        No reason to discard it, better sequencers are always around the corner
    • 6y ago
• divbzero 6y ago
  About a decade ago I thought about volunteering for one of the public genome projects but then realized that (1) the legal protections didn’t exist yet and (2) the privacy question should be considered not only by me but also by my family.
  • ars 6y ago
    One of the biggest of those: https://www.joinallofus.org/ https://www.joinallofus.org/ I've considered joining it.
• pixl97 6y ago
  Is there any law/rule stopping me from getting your DNA and getting it sequenced? Other than most people wouldn't want to pay to get that done? Collecting your DNA would be the hardest part of that, I guess.
• jrumbut 6y ago
  Regardless of their policies, they still want to store it themselves and put it on the Internet. I am hoping that someday there will be a sequencing company that will mail me a drive containing the only copy and destroy the sample. I'm not worried about a sophisticated attack on my individual sequence but I suspect most of these services are or will be targeted by advanced and persistent attackers. Call me paranoid but I don't want my genome in an internet connected database (though I am very curious to see it).
  • lukaa 6y ago
    And you should trust that company or government based on what?
    • jrumbut 6y ago
      I have no argument against more paranoia, but my curiosity is such that I'm willing to take some risk.
  • njovin 6y ago
    This is not meant to be confrontational in any way: what are the risks of having your genome exposed?
    • jrumbut 6y ago
      Primarily my concern is what it will be possible to infer about a person (or what some people think they can infer) from the genome not just now but in 40 years. The history of science and politics are filled with ugly chapters of people committing bad acts based on the ancestry of other people.
  • mirimir 6y ago
    I wonder if there's some way to do testing on a walk-in basis, in a way that would allow transparency re the lack of sample and data retention. So a customer walks in, provides a sample, and walks out with data on a thumb drive. And perhaps also with the module that was used for the analysis.
• all_blue_chucks 6y ago
  What is the impact of having your DNA known? As far as I can tell the worst case scenarios are finding out you have to pay child support or getting placed at the scene of a crime. If those risks don't apply to you, who cares?
  • dfee 6y ago
    If you’ve got nothing to hide... then make it all public. Let’s start with your finances.
    • leafboi 6y ago
      Finances are different right? People tend to hide their finances because of taxes and other illegal shit, and also to prevent jealousy. As for genetics, most of your genetics are on display every time you walk out the door. People look at you and they can have a good guess about a huge portion of your genes. For example if you have a beard and a penis you probably have a Y chromosome, though this is more challenging to figure out nowadays. Thus mostly their's really nothing left to hide in terms of genetics. In terms of finances... while I specifically have nothing to hide, more people have things to hide in this area.
      • deleted 6y ago
        [deleted]
    • all_blue_chucks 6y ago
      I openly talk about my finances with anyone who wants to talk personal finance. What threat are you imagining this could pose?
      • daveevad 6y ago
        let's start with your bank account and routing numbers.
        • all_blue_chucks 6y ago
• theCodeStig 6y ago
  According to their own FAQ, Nebula uses a lab in HK. In current times, that may be of concern.
• leafboi 6y ago
  From an ethics standpoint their's something to talk about here... From an individual standpoint I really don't care about someone out in the public knowing my genome. It's not like I store my passwords on my genome, how is this information going to be used against me?
  • anitil 6y ago
    One example might be the BRCA gene mutation. It gives you a higher chance of breast cancer and is typically associated with Ashkenazi Jews. I'm sure your insurer would be interested to know if you have it, and that potentially your children are at an elevated risk. Unfortunately there might be people interested in the ethnic association as well.
    • leafboi 6y ago
      You got a point, but from a different angle is it ethical to hide your medical data from a company that may end up paying all your medical bills? It's almost like how people hide finances, you hide it because you want to do something unethical. If I was jewish, I feel that right now I would just be slightly worried for myself. In general I wouldn't be too worried at all. I would, however, be more worried for my jewish kids, they may have to deal with that stuff in the future. Although I would worry, I would question whether my worry is based on ethical grounds as that part is not clear.
• kobbad 6y ago
  I'm the founder and CEO of Nebula. I think in the not too distant future, everyone will get whole genome sequencing as standard of care. We think it's important to set up the privacy frameworks today around storing and sharing access to DNA. It's interesting because all of the risks of having your DNA data out there are not fully understood yet. And, as a consequence, legislation hasn't caught up to the technology. Should life insurance companies be able to use your DNA? Should schools be able to use it as an admittance criteria? Well, right now the law isn't stopping them from doing so. This hasn't been a huge problem today because, if you're really concerned about DNA privacy, you just won't buy a DNA test. But, sooner than later, you'll need genetic testing to get the right medicines, optimal treatments, best diagnostics, etc. Once whole genome sequencing makes the transition from consumer use cases to clinical ones, many users will be faced with choosing between their health and their privacy. We don't think that's a fair choice and think we need to start working on mitigating the privacy risks today.