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Privacy Technology

All Those 23andMe Spit Tests Were Part of a Bigger Plan (bloomberg.com) 75

23andMe CEO Anne Wojcicki wants to make drugs using insights from millions of customer DNA samples, and doesn't think that should bother anyone. From a report: A few months ago, on the morning 23andMe Holding Co. was about to go public, Chief Executive Officer Anne Wojcicki received a framed sheet of paper she hadn't seen in 15 years. As she was preparing to ring in the Nasdaq bell remotely from the courtyard of her company's Silicon Valley headquarters, Patrick Chung, one of its earliest investors, presented her with the pitch document she'd shown him when she was first asking for money, reproduced on two pieces of paper so she could see both sides. The one-sheet outlined a radical transformation in the field of DNA testing. Wojcicki's plan back then was to turn genetics from the rarefied work of high-end labs into mainstream health and quasi entertainment products.

First she'd sell tastemakers on her mail-in spit kits as a way to learn sort-of-interesting things about their DNA makeup, such as its likely ancestral origins and the chance it would lead to certain health conditions. Eventually she'd be able to lower prices enough to make the kits broadly accessible, allowing 23andMe to build a database big enough to identify new links between diseases and particular genes. Later, this research would fuel the creation of drugs the company could tailor to different genetic profiles. 23andMe would become a new kind of health-care business, sitting somewhere between a Big Pharma lab, a Big Tech company, and a trusted neighborhood doctor.

Some of this still sounds as far off now as it did during the Bush years. Improbably, though, 23andMe has rounded second base and is heading for third. Wojcicki did sell millions of people on DNA test kits -- 11 million and counting -- and bring such tests to the mainstream, with some help from Oprah's holiday gift guide. An estimated 1 in 5 Americans have turned over their genetic material to 23andMe or one of its competitors. Now that she's got the data, Wojcicki is working on the drugs. Her company is collaborating on clinical trials for one compound (and nearing trials for another) that could be used for what's known as immuno-oncology, treatments that attempt to harness the body's complex immune system to beat cancer. 23andMe says it's also exploring drugs with potential use in treatments for neurological, cardiovascular, and other conditions, though it declined to specify them. Last month the company bought Lemonaid Health, a telehealth and drug delivery startup that offers treatment and prescriptions for a select group of conditions, including depression, anxiety, and STDs.

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All Those 23andMe Spit Tests Were Part of a Bigger Plan

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  • by drinkypoo ( 153816 ) <drink@hyperlogos.org> on Thursday November 04, 2021 @09:20AM (#61956971) Homepage Journal

    What bothers me most is that you can't trust any of these companies not to sell your data to other companies. In the USA in particular they can do pretty much whatever they want with your data legally, and in practical terms they can do whatever they want with anyone's data and there's no technical way to prevent that.

    Despite all that I'd probably still use the service if they didn't hand differing results to identical twins. If their genetic screening service is total bullshit, how will their drug creating business do better?

    • Re: (Score:3, Informative)

      That's really on the user. They agree to those terms. They sign away those rights. The CEO of 23andme was married to Google founder Sergey Brin until 2015. The terms of service make clear your data is shared with partners like Google and others.
      • Re: (Score:3, Insightful)

        That's really on the user. They agree to those terms. They sign away those rights.

        The problem is, they're not just signing away their rights - they're signing away those of their blood relatives too. And that's precisely why 23andMe and their like should never have been been allowed to exist in the first place.

        I have a cousin who signed up for Ancestry's DNA service and I'm still pissed at him. He didn't have MY permission - nor that of a whole bunch of others in our bloodline - to sign away the rights to OUR DNA. Any country that fancies itself as being under the rule of law shouldn't a

        • by reanjr ( 588767 ) on Thursday November 04, 2021 @10:28AM (#61957157) Homepage

          You don't own the genes you share with your relative, dude. That's like claiming ownership over the letters you used in your novel.

          • Genetics testing is a whole different ball game, and cannot be summed with a stupid comparison befitting the pre-computing days.
          • You don't own the genes you share with your relative, dude.

            Maybe - but neither does your relative. Which means he should not be entitled to sell their information - which is the only important thing about them. Owning property in the characteristics of living beings is obscene, but either you see that or you don't.

            That's like claiming ownership over the letters you used in your novel.

            People who write novels DO claim ownership over the letters they use in them - in the specific order used in the novel. It's called "copyright".

          • Since your parents were solely responsible for the creation of the specific genome that you possess, have them file a copyright on your specific gene sequence. That makes any use of your genetic makeup a derivative work and a copyright violation. It's an idea way out in left field, and I'm not sure the various copyright offices would accept the premise and issue the copyright, but it would make for a way to restrict the use of your genome without your permission.
            • by j-beda ( 85386 )

              Since your parents were solely responsible for the creation of the specific genome that you possess, have them file a copyright on your specific gene sequence. That makes any use of your genetic makeup a derivative work and a copyright violation. It's an idea way out in left field, and I'm not sure the various copyright offices would accept the premise and issue the copyright, but it would make for a way to restrict the use of your genome without your permission.

              Or rather, without your parent's permission. In this legal theory, you can only own your kids' copyright, not your own, and only if you can show that you are using the copyright on your DNA under license from your parents.

        • That's really on the user. They agree to those terms. They sign away those rights.

          The problem is, they're not just signing away their rights - they're signing away those of their blood relatives too. And that's precisely why 23andMe and their like should never have been been allowed to exist in the first place.

          I have a cousin who signed up for Ancestry's DNA service and I'm still pissed at him. He didn't have MY permission - nor that of a whole bunch of others in our bloodline - to sign away the rights to OUR DNA. Any country that fancies itself as being under the rule of law shouldn't allow shit like this.

          And the Chimps we share alomst all of our DNA with weren't consulted either. Telll me - if you had to get a DNA test for medical reasons, would you insist on getting permission from all 8 billion other humans?

      • by e3m4n ( 947977 ) on Thursday November 04, 2021 @10:16AM (#61957131)
        Not true. Lets say 4 relatives of yours signed away their rights. They can now steal your rights through familial affiliation. Therefore those rights cannot be signed away. No more than you can sign away your 13th amendment protections. One cannot actually sign away a RIGHT. They can can only sign away privileges.
        • Your rights end at the tip of your nose, don't be a dufus.

          • by e3m4n ( 947977 )
            you quoted that entirely wrong. Your freedom of speech ends at the tip of MY nose. I think you misunderstand what that means.
            • No, you're entirely mistaken.

              There is more than one saying.

              The one you know about, it a rephrasing of the one I used, for a particular use case.

              Wow, you're sure arrogant in your ignorance.

    • by tchdab1 ( 164848 )

      It's sh!t like this that's kept me from having my genetic profile "researched" by recreational companies such as 23 And Me.
      Who knows what other stuff they've planned for the genetic material that I know they've been data-basing?

      • Wouldn't it be nice if you could get someone to tell you what your genes say about you - with a cast-iron guarantee that the information would never be abused or sold?

        Never happen, so we just have to do without. Except those who haven't the intelligence to think it through.

    • Isnt this the same company that tried to PATENT dna? Your genetic code⦠their IP. I say fucking pay me for even getting remotely close to my dna. It doesnt really get more IP of the person it belongs to.
      • In more honourable times, anyone who even proposed such a thing would be staked out for the ants.

    • What bothers me most is that you can't trust any of these companies not to sell your data to other companies. In the USA in particular they can do pretty much whatever they want with your data legally, and in practical terms they can do whatever they want with anyone's data and there's no technical way to prevent that.

      Despite all that I'd probably still use the service if they didn't hand differing results to identical twins. If their genetic screening service is total bullshit, how will their drug creating business do better?

      But you can trust that they exactly will share your data with others. I can't imagine that Law enforcement is not getting the results of every test taken. It's not completely precise for LE's needs, but it puts them on a path for just who to look at.

      • by tlhIngan ( 30335 )

        But you can trust that they exactly will share your data with others. I can't imagine that Law enforcement is not getting the results of every test taken. It's not completely precise for LE's needs, but it puts them on a path for just who to look at.

        Actually, the genetic testing companies typically go for 150-200 markers. Law Enforcement DNA Tests are typically around 20-odd markers. And almost all of those 20 markers align with what the genetic testing companies use as well.

        A genetic match through a geneti

        • But you can trust that they exactly will share your data with others. I can't imagine that Law enforcement is not getting the results of every test taken. It's not completely precise for LE's needs, but it puts them on a path for just who to look at.

          Actually, the genetic testing companies typically go for 150-200 markers. Law Enforcement DNA Tests are typically around 20-odd markers. And almost all of those 20 markers align with what the genetic testing companies use as well.

          A genetic match through a genetic testing company is more accurate than a standard LE test and they're typically even more specific - a lot of the markers are single-base markers where the only difference is a single base pair in a string of base pairs.

          Well then - looks like LE should do better using the 23 and me data.

    • I'd probably still use the service if they didn't hand differing results to identical twins.

      Yup. They call my son more than 50% of something I'm not at all . . . and the ONLY relative I have from a given country EVERY family member is in that region (for decades) but they confidently say it's somewhere else.

      • Don't take this the wrong way, but how sure are you that none of your grandmothers, great grandmothers, or great great grandmothers didn't sleep around with foreigners?

        Cheating didn't start with Tinder. Males are found to be solely responsible for 20-30% of infertility cases and contribute to 50% of cases overall. So if anyone looks back far enough, it's likely some grandpas were shooting blanks and the milkman, a OTR trucker, Wilt Chamberlain, or Castro were really their ancestor.

        https://www.the-sun.com/li [the-sun.com]

        • That's the most hilarious part; people using their own oral tradition to disbelieve their offspring's DNA results!

          It doesn't even cross their little minds that their own background might be different than they were told.

          Heck, I haven't done any DNA analysis, but just the birth/death/marriage records from the genealogy site showed me that a lot of the oral tradition I received was incorrect. I was told a certain branch of the family arrived from Europe after WWI, and it turned out they'd been in the US since

        • Don't take this the wrong way, but how sure are you that none of your grandmothers, great grandmothers, or great great grandmothers didn't sleep around with foreigners?

          Without slamming my son's mother, let's just say that they're from a "racially pure" people by tradition and practice. It's super unlikely from a geographical & historical standpoint and "my people" are something that they would work hard to avoid . . .

          Is it wrong because that makes me feel proud? :D :D :D

    • And not possible to pay anonymously, either

    • if they didn't hand differing results to identical twins.

      If you get tested at the same time then you'll get the same results. However, if you get tested a few years apart then your results will vary. The reason for that the information is based on statistical analysis. What this means is that the more samples they get then the more verified research data they can associate with samples which improves (theoretically) improves the accuracy of their data set.

      how will their drug creating business do better?

      During drug testing, they will have a complete medical history of the participant. I believe the hope is

  • Who is surprised?

    Well I am surprised that this is worth an article... this was obvious from the beginning.

  • The CEO of 23andme is the wife of Google founder Sergey Brin until 2015. Google is most certainly playing with their data, from what can be seeing in their Terms of Service.
  • Good (Score:5, Insightful)

    by Impy the Impiuos Imp ( 442658 ) on Thursday November 04, 2021 @09:40AM (#61957025) Journal

    23andMe CEO Anne Wojcicki wants to make drugs using insights from millions of customer DNA samples, and doesn't think that should bother anyone.

    It shouldn't bother anyone. You should have said, "Your genetic info will ba anonymized and, along with millions of others, be used to develop new drugs!"

    They'd get massive buy-in. Just look at the numbers of people volunteering for vaccine testing. Lots of hot air, but rare is the opportunity to actually contribute to progress directly.

    • With the vaccine, it was pretty clear what the actual exchange was. You didn't sign up for future testing for a different virus. It's not clear how you would anonymize someone's DNA that very uniquely identifies an individual. Current attempts to anonymize aggregated personal data have been failures and those are even less specific to an individual.
  • need moar info, pls!

  • I have no problem with it, as long as those drugs are offered at cost, since we all contributed to their development.
  • by magarity ( 164372 ) on Thursday November 04, 2021 @09:52AM (#61957059)

    I didn't need a pitch; I just assumed this is what they were doing the dna collection for in the first place.

  • by cascadingstylesheet ( 140919 ) on Thursday November 04, 2021 @09:58AM (#61957079) Journal
    You cynics should be embracing more women biotech CEOs, especially if their tech has to do with small quick testing!! It must be your latent misogyny coming to the fore.
  • I was one of those early on that did the 23-and-me test for $99. The data I got back was not really all that interesting -- I have ancestors where my grandparents said they were (Ukraine) and quite a few traces back into Africa (no surprise even though I am whiteboy). Then a list of possible afflictions sorted on probability.

    I lost interest in it because they wanted me to pay $9 a month forever to take their surveys to enrich their data base. (are my fingers the normal length? did I lose hair when?)

  • irony (Score:4, Interesting)

    by reanjr ( 588767 ) on Thursday November 04, 2021 @10:24AM (#61957149) Homepage

    Oprah helped push these tests. Oprah also starred in The Immortal Life of Henrietta Lacks.

    That's ironic.

  • by Wycliffe ( 116160 ) on Thursday November 04, 2021 @10:52AM (#61957219) Homepage

    I would think for this to be useful, you would need to link it to medical records.
    Just DNA doesn't seem very useful unless you also know what diseases are associated with the DNA.

    • by ceoyoyo ( 59147 )

      That kind of thing is relatively easy to mine from the scientific record.

      The real value of a dataset like this is to look and say "okay, our new wunderdrug only seems to work in people with this particular gene variant. Do enough people have that variant to make a clinical trial worthwhile?"

      This is basically the US-style private enterprise take. Other countries have similar projects but more public good and less private enrichment. For example, Iceland has a public dataset of most of the population, and the

  • Paying money just so you can say "i'm 1/52 native American", or whatever it is. They're commercials always had some guy thinking he was one thing, then finding out he was mostly something else. Which is strange, you're mostly culturally whatever you were raised as. So... person using 23/and me: "I'm partially Inuit, so I need to be more in tune the cold because my genes tell me so" Same person: "I was born genetically male, but I identify female".
    • by haggie ( 957598 )

      I had a very white buddy go into a "you don't know my struggle as an indigenous person" rant at a dinner party. Thinking that it had to be a joke, I laughed at him. He told me of his American Indian ancestry. I laughed again.

      We're no longer friend because he thinks I'm racist and I think he is an idiot. We're probably both wrong to some degree.

  • First she'd sell tastemakers on her mail-in spit kits ...

    They're tasting them? Gross. :-)

  • ... She will NOT get a Christmas card this year. Has she been tested? I'm beginning to think not.

    I mostly use FTDNA, as they don't do health stuff, and use a whole genome sequence (not much more than 23&me charges for just a few markers) for everything else. I have used 23&me, but am not impressed with the quality. Still have a discount from their lawsuit, but it's a fraction of how much they reduce in sales and I can't combine.

  • OK, this is all "cutting edge" and there is a genuine "iffy" factor, but I was an early adopter who got the medical they offered before the FDA stomped on her. First: it correlated very well with what I knew of family history. You might ask, "So, like, WHY?" Confirmation and clarification, dude. Second: I admit I didn't have genes for anything horrible, but >I thought they did a _very_ good job of qualifying and detailing the research available and reminded people they should seek professional advise bef

  • Comment removed based on user account deletion
  • I really could have lived without knowing that I have a deadbeat half-brother dying of cancer that would time his appearance to my father dying and try to insert himself (unsuccessfully) into the estate.

  • Let's hope the drugs work better than the DNA tests, but I doubt it. I know several people who got 23andme tests that were totally inaccurate.

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