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Genetic Testing Companies Sell Your DNA, All Promise Of Privacy Is Bunk

Discussion in 'Scientific Studies' started by haidut, Oct 19, 2017.

  1. haidut

    haidut Member

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    I have known this from the very beginning as the sole business model of these companies is the accumulation of data, its analysis and sale to third-parties who can then target you with better ads for products and services. The uber-monster of this advertising nightmare would be a Facebook + 23andMe collaboration. The scary part isn't so much the existence of these companies or the stupidity of people using their services. It is the fact that now genetic testing is being pushed onto every family expecting a child (pre-natal genetic testing) as well as within the first few days after a child is born. I experienced both of these "psyops" first-hand when my children were born. Unsurprisingly, the companies which the hospitals use to conduct these pre- and post-natal genetic screens are the same ones the article below describes (Helix, Ancestry, and 23andMe). Needless to say we declined any genetic testing, which absolutely enraged the doctors and nurses.
    Based on the article below and some other information I have, I now suspect LabCorp is also engaging in such genetic testing without its customers' knowledge or consent. Unlike the genetic testing companies, LabCorp has a much larger pool of clients and received multiple samples from most of them. I have not seen their ToS, but can anybody here tell me what is to prevent LabCorp from keeping a patient sample and run a full genetic profile on it? As long as it is not shared with anybody else, LabCorp is probably free to do as they please with the sample. Then these profiles sit in a database until the regulatory environment is more beneficial or LabCorp decides to sell the data to a foreign company which is not even bound by any regulations. Does anybody have more information on what LabCorp claims to do with the patient samples?

    https://gizmodo.com/what-dna-testing-companies-terrifying-privacy-policies-1819158337
    "...Despite all that, we’re guessing that when you signed up for Ancestry or 23andMe, you probably didn’t read the fine print to find out what, exactly, those companies plan to do with your data. We can’t blame you—they’re long, boring polices written in legalese that’s difficult to understand. If you actually read those policies, though, you might not have gone ahead with the test. It turns out that the breadth of rights you are giving away to your DNA is kind of terrifying. Lucky for you, Gizmodo slogged though every line of Ancestry.com, 23andMe, and Helix’s privacy, terms of service, and research policies with the help of experts in privacy, law and consumer protection. It wasn’t fun. We fell asleep at least once. And what we found wasn’t pretty. “It’s basically like you have no privacy, they’re taking it all,” said Joel Winston, a consumer protection lawyer. “When it comes to DNA tests, don’t assume you have any rights.”
    "...“I would never sign away the rights to my genes,” said Petter Pitts, the president of the Center for Medicine in the Public Interest and a Former FDA Associate Commissioner. “You shouldn’t either.”
    "...“The primary ways we use genetic data are to provide services to our customers, perform product research and development, and, as necessary, for quality control activities,” 23andMe privacy officer Kate Black told Gizmodo. What’s not clear is who all of those third parties are and what kinds of rules the companies put in place to prevent those third parties from abusing the access to genetic information."
    "...(23andMe told Gizmodo that the only contractor that actually has access to genetic information is their lab contractor, Lab Corp. The company said this information isn’t posted online, however, because customers don’t ask for it.) “They’re handing over your information to someone else and when they do they’re disclaiming responsibility for it and you could never find out who those third parties are,” said Winston. Pitts also pointed out that if a genetic testing company was bought, there’s no telling how a new owner might handle the data. “If you don’t like your pictures copyrighted by Facebook, how are you going to feel about your genetic code being bought by one company, then bought by another and all the sudden used for things you never realized?” Pitts told Gizmodo. The other thing that’s clear is that genetic testing companies are definitely selling information to third parties for medical research in order to make money."
    "...Even if the company doesn’t get hacked, your information could be exposed. If you sign on to allow your genetic information to be used for research, you could be identified even if your information is stripped of any “identifying details.”
    "...Way down in the fine print, 23andMe spells out a policy that basically makes sure the company will never get sued, ever:If you sue them for something (like maybe screwing up your test), and lose, you would be responsible for the possible millions of dollars in legal fees accrued by 23andMe."
     
  2. lollipop

    lollipop Guest

    Just WoW. So glad I never felt to do this testing.
     
  3. charlie

    charlie The Law & Order Admin

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    :+1
     
  4. lollipop

    lollipop Guest

  5. cyclops

    cyclops Member

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    Can someone give a hypothetical example of how this could be bad for someone?
     
  6. lollipop

    lollipop Guest

    From the second para of this link. Good article btw...:

    “...genetics can be altered by nutrients, or more specifically, that mitochondrial bioenergetics may determine whether and how genetic disorders are expressed. Sit with that one for a moment. Energy, not genetics, may be the most fundamental component of health or disease. Energy. Simple. Uncomplicated. Energy.”
     
  7. lollipop

    lollipop Guest

  8. Waynish

    Waynish Member

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    @haidut what do you think about doing a little story to expose some of the lunacy of these companies knowing some core truth about us via genetics. We could send someone in with hidden cameras (or just regular ones) and show that we can get supposedly deterministic factors to flip for the same person each time they're tested. This has been done with supposedly conclusive antibody tests for HIV, but of course it could be done deliverately using various methods for DNA tests.

    Could also try to buy a bunch of the data and mail people (including journalists) who are at high risk of breast cancer according to the data some very intense advertising for insurance or something... Would make a scandal for sure.
     
  9. OP
    haidut

    haidut Member

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    Think pricing discrimination for everything you buy for example. Want to buy a house - sorry, price for you is X thousand higher because of your high genetic risk for violent criminal behavior, want to buy a car - sorry, price if Y thousand higher because of your genetic risk of dementia, impulsiveness and mental health issues, want to buy health insurance - well, I think you can see how this can be really ugly.
    I am not even mentioning the more benign spam the article talks about - i.e. one of the company's partners keeps calling/mailing you materials for taking statins because your genes say you have a high risk for CVD.
    You really don't see how this can get awry?? I mean the same thing happened with the NSA warrantless wiretapping - collecting sensitive information on you and the people you call/text. The government said this data is so secret that it can only be used for terrorism investigations. And then it turned out NSA started sharing this data with local law enforcement to bust people without probable cause. They even told the prosecutors to concoct stories about how the evidence was obtained because it is illegal for NSA to share this data for law enforcement purposes.
    Opinion | Surprise! NSA data will soon routinely be used for domestic policing that has nothing to do with terrorism
    The NSA can now share unfiltered surveillance data with other intelligence agencies
     
  10. OP
    haidut

    haidut Member

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    Way too dangerous IMO. I think it has a high potential to send a person to jail. If the person doing this is not a journalist (and even for them it would e quite dangerous) they can be charged with a number of offenses at the state and even federal level.
     
  11. 800mRepeats

    800mRepeats Member

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    When I last applied for health insurance (pre-ACA, when they could turn you away or jack-up your premiums, etc.), I recall being asked whether I'd ever had any genetic testing done, and, if so, would have to supply that information.

    Oh, hell no! to testing and turning over.
     
  12. cyclops

    cyclops Member

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    How could they possibly tell all this for a fact? How can tell you have a risk for dementia or violent behavior because you come from Europe or wherever, with absolute certainty? Way too many factors. You can't charge someone more for a car or a house based on this....makes no sense, is racist, and would be illegal.
     
  13. OP
    haidut

    haidut Member

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    Are you serious?! It is already being done. Insurance companies contract a third-party which does risk assessments and sells them a "score" of how risky you are. So, the insurance company is in the clear as they are not directly discriminating you, they just buy a risk assessment service. It is being done as we speak for life insurance.
    It's Legal For Some Insurers To Discriminate Based On Genes
    If You Want Life Insurance, Think Twice Before Getting A Genetic Test | Fast Company

    What other business model for these genetic data accumulation companies do you see? The very point of that article is that this is their goal - to sell the most intimate details about you to whomever wants that information. Even if it is used just for marketing - do you feel comfortable with companies blasting you with information over email for say things like ED or CVD drugs and sending those ads to your work email?? How about sending Viagra samples to your work address??
    Did you see the article about NSA data gathering? Both the data gathering and the current sharing of that information were illegal a few years ago. Did not stop the government from doing it. And all the promises to not use this information ilegally turned out to be a lie. So, now a prosecutor can charge you as say drug dealer even though that prosecutor does not have an ounce of evidence legally collected on you. It was all wiretapping info given by the NSA in direct violation of so many federal and state laws. And then that prosecutor concoct a LIE on how this evidence was gleaned from anonymous informers and you get convicted. Please read those articles. Not sure if you are just being naive or trying to troll...
     
  14. BemusedObserver

    BemusedObserver Member

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    WOW, this never occurred to me when I did my test back in April! I did have initial hesitation, but my curiosity got the best of me. It is interesting to get your data back and be able to review your ancestral genes.
     
  15. BingDing

    BingDing Member

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    Oh man, that is so scary. 1984 was nothing compared to this.
     
  16. Badger

    Badger Member

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    I am wondering: can you get genetic testing using a fake name or identity? If insurance companies don't know the real identity of name attached to test results, they can't screw the real person over.

     
  17. BemusedObserver

    BemusedObserver Member

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    That's a good point, I did not have to submit any identifying documents or cards...hmmm, maybe
     
  18. OP
    haidut

    haidut Member

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    Yes, and some people have been doing it but since you pay with a credit card, usually they still know it is you. So, you'd have to use someone else's card or a prepaid one if you want to be anonymous. Of course, not to be outdone, these companies are well aware that some people will try to stay anonymous and usually have a clause in the terms of service saying you agree NOT to do that. Not sure what the legal ramifications are and if they can be enforced if you do not comply but at the very least it shows you the companies are expecting people to get scared and start lying about their identity so they try to prevent that. Why would people get scared of using somebody's service if tat service was totally benign and legit...
     
  19. OP
    haidut

    haidut Member

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    See my response to Badger above.
     
  20. Fame

    Fame Member

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    Sergey Brin, who is one of the founders of Google; his wife is the CEO of 23andMe, a DNA testing company. Now aint that some ***t o_O
     
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