8 ms·

Reminds me: this guy used gene therapy to cure himself of lactose intolerance quite a while ago. Not sure how common it actually is among biohackers. https://w

• dekhn 7y ago
  People who do this are usually irresponsible and don't even know whether they've achieved their goal or not. """Just to make sure this is really clear because people have been angry about this ever being tested in more humans. This will not be used in humans again until significantly more testing is done and the manufacturing protocol is massively refined. This could mean years before another test is conducted. More tests will need to be done in animal models as well. Maybe we'll do away with the viral aspect all together and completely overhaul the DNA. The reason this video was posted was because I want this to be an open source technology. If you have suggestions for how it can be improved, leave it in the comments.""" I spent 20 years of my life working towards gene therapy and to see idiots do stuff like this (in an incompenent and unconvincing way) is so frustrating.
  • 0xffff2 7y ago
    You didn't actually tell us why it's irresponsible. Is there a real risk of them hurting anyone but themselves?
    • anhner 7y ago
      I would guess that people would try and replicate their results and end up hurting themselves, for one.
    • whatshisface 7y ago
      Killing yourself harms more people than just yourself, true personal independence is an anarcho-capitalist fantasy. The harms to others include your friends and loved ones being upset that you're dead (obviously), whatever it is you're testing gaining a reputation for killing people, and also it removes your presumably smart brain from the team of people working on the problem. If you merely harm yourself then all of the above apply but to a lesser degree.
      • kungito 7y ago
        If you feel bad about something that does not mean others have a moral obligation to prevent your feeling bad from happening. If there is one thing we are sure about is that we "are" and if someone wants to stop "being" but someone else doesn't think he should because he will be sad then that selfish fuck should respect someone else's decision about himself and do what he can regarding fixing his own feelings. The only time this doesn't apply is with parents leaving kids because they forced their "being" onto them and there's no escaping.
        • whatshisface 7y ago
          Isn't causing other people pain a pretty basic thing that you aren't supposed to do? If I went around delivering electric shocks to my friends, the best advice would be for me to stop, not for my friends to achieve a level of zen so high that pain didn't bother them.
          • krick 7y ago
            > Isn't causing other people pain a pretty basic thing that you aren't supposed to do? Uh, obviously not? Seriously, this is absolutely self-inconsistent way to see things. No, it is not a "pretty basic thing" and the world isn't a friendly place, deal with it. People always cause pain to the others whether you like it or not. If I've been dating a girl for several years and still love her, but she does not love me anymore, she is causing me pain by breaking up with me. Quite likely more so, than a dear friend's death and pretty much for sure more that, say, a robbery. So what, she isn't supposed to break up with me now or what?
            • geggam 7y ago
              If only society as a collective thought this way perhaps we could remove the PC gone wild stuff and get back to unemotional laws. Big example is a hate crime. Making someones opinion or feelings criminal is insanity.
              • 7y ago
    • bonniemuffin 7y ago
      It sets the entire field back by creating a lot of fear and bad press that discourages further research. This example is from institutional research rather than an indie biohacker, but Jesse Gelsinger's death may have set back the field of gene therapy by many years due to fear (some realistic and some unrealistic). https://www.sciencehistory.org/distillations/the-death-of-jesse-gelsinger-20-years-later https://www.sciencehistory.org/distillations/the-death-of-je...
      • wetpaws 7y ago
        He is not responsible for fears of other people. People were afraid of everything throughout the whole history of human science.
        • oarabbus_ 7y ago
          No, but he can definitely be responsible for the technology being highly regulated or restricted if his experimentation goes awry .
      • pmarreck 7y ago
        I think we have to weigh the risks vs. the potential rewards, and accept "premature death" as a possible cost. The lack of ability to process out ammonia seems pretty debilitating, so that seems like it was a good candidate. Jesse Gelsinger is a hero, and should be remembered as such. That all said, we should glean as much science as possible from the postmortem to understand and prevent whatever misunderstandings resulted in the death, going forward.
    • jon-wood 7y ago
      Is there a risk in genetic engineering that you're not only hurting yourself but also potentially any children that you have? I don't know the answer to this, but intuitively it seems like a possibility that you could accidentally introduce a genetic trait that won't become apparent for generations.
      • JoeAltmaier 7y ago
        Don't think so. Traits passed on through eggs and sperm, not muscle, bone etc. If sex cells not affected, then no issue of passing on changes?
        • pmarreck 7y ago
          I am not a biologist, but do these sorts of therapies discriminate which cells they actually affect?
          • dekhn 7y ago
            it depends on the details. if you collect cells from a patient, filter them very carefully so only a particular type of cell is there, treat that in vitro, then reinject.... it should (with some caveats) only affect the cells you treated. if you inject a therapy into the body (muscle, blood, liver, etc), there is a non-zero chance that some germ cells can be modified. It depends on the vector, the methodology, random chance, etc, etc.
    • DecayingOrganic 7y ago
      A neuroscientist (nate1212) on reddit offered the following reasons: - He just possibly infected his whole digestive system. Not just small intestine, but stomach as well. Furthermore, AAV can potentially exhibit transcytosis through epithelial layers, suggesting that it's possible the virus infected more than just his digestive system. - He did not determine an appropriate dose, and so he likely infected with a HUGE genetic payload. Overexpression with AAV can kill infected cells, which means this man is risking his digestive lining. - Neither the promoter nor the encoded protein itself are human, potentially risking (possibly severe) autoimmune reaction. - There are few/no long-term studies on effects of AAV integration and expression in humans. There is indeed evidence that AAV increases risk of cancer, almost certainly in a dose- dependent manner. - AAVs could integrate randomly into your genome in low frequencies (0.1% to 1%), meaning that they could just by chance disrupt a gene you really need to not get cancer. The person in the video also suggested "trials for volunteers" (on his reddit post), but immediately backtracked on that after he learned that people cannot legally consent to such experiments.
      • rubicon33 7y ago
        > AAVs integrate randomly into your genome meaning that they could just by chance disrupt a gene you really need to not get cancer. I watched the video. I am not a biologist. I could have sworn at one point he said that it would be inserted at "known, and safe" locations. Not "random"... ?
        • DecayingOrganic 7y ago
          This is mainly true, however we are still observing random integrations at low frequency such as 0.1% to 1% [0], so if you bring a billion virus particles in, it still poses a non-negligible risk to the agent. Thank you for your input, I'll word it more accurately. 0: https://www.ncbi.nlm.nih.gov/pubmed/29326962 https://www.ncbi.nlm.nih.gov/pubmed/29326962
          • rubicon33 7y ago
            Very interesting. Thanks for the clarification!
    • dekhn 7y ago
      actually I think the biggest risk is that it will create the impression in people that gene therapy is easy and that a random person on the street can just inject something into them and cure a disease. every self-injecting biohacker I've ever seen basically doesn't even know scientifically speaking whether they had the effect that they thought they did an experiment. contrast this to real gene therapy researchers who have to go through careful clinical trials and do a lot of statistics just to prove that they did what they said they did. the reason that we make them do that is because it's all too easy to fool yourself things like placebo effects and self bias. legitimate researchers go to extensive lengths to demonstrate that the procedure they did did what they said they thought it was going to do and then it didn't have side effects. none of the self biohackers have done that.
      • K0SM0S 7y ago
        > legitimate researchers go to extensive lengths to demonstrate that the procedure they did did what they said they thought it was going to do and then it didn't have side effects. none of the self biohackers have done that. I trust you (haven't checked biohackers much myself), but as with any field of knowledge/research, the opposition you suggest has nothing to do with credentials and everything to do with intellectual honesty, integrity of the researcher. I mean, let's take programming since it's HN. Say you compare two programs. You could follow the scientific method (hypothesis -> experiment(s) -> conclusion -> new hypothesis -> etc) like any decent engineer or scientist would... or you could just randomly "feel" which is better "in your opinion" — basically being a charlatan with your own topic. Unless you're doing marketing, you should be selfishly attracted to the truth — which is really better / faster / etc — because you need the tool for yourself, not to sell it to someone else. I'll never understand charlatanism in research, I won't; but even toy benchmarks for lulz or journaling can be made scientific, easily. It's just a logical framework, which I'd think any self-proclaimed 'reasearcher' knows in and out... This is isn't to say that you can control all variables in real-world experiments — biological and social research are the hardest in that regard. Sometimes you gotta take a leap because you won't ever be able to "prove" anything beforehand, it's only retrospectively in statistics that you'll know (at the level of metastudies). We've taken many such a bets with public health, family health, our own; whenever the `estimated risks / perceived benefit` ratio makes sense. I do agree it's wrong to categorize beyond these facts, e.g. credentials of the author of a good idea, or lack of "proof" thereof, have little to no meaning historically — can't stop an idea/solution whose time has come. I mean, Js is the most popular language with Python, let that sink in for a minute. (lol)
    • oarabbus_ 7y ago
      I don’t understand this question. Being irresponsible and only hurting oneself aren’t mutually exclusive. Even assuming your premise were true, it just takes one irresponsible idiot to fuck themselves up to result in excessive regulation which slows progress.
  • krick 7y ago
    Well, he can eat pizza now. What use your 20 years of experience were to him anyways?
    • dekhn 7y ago
      It's a narrative that he can eat pizza. I don't think he really cured anything. Amusingly, none of my research in gene therapy is relevant today. It was predicated on an already obsolete concept- designing transcription factors that can bind to a unique site in the genome to guide integration. CRISPR (which is what the article is about) made my approaches technically less viable, because they require extensive simulation, modelling, and experiment, while with a good CRISPR system, you just need an appropriate guide RNA. Of course the really hard problem isn't the integration technique, it's knowing what to integrate.
    • maxerickson 7y ago
      A frequently successful alternative therapy is to eat some yogurt once in a while. I've never had terrible symptoms (merely unpleasant), but I am lactose intolerant, and the tiny bit of lactose that is present in mozzarella (~½ gram in a serving) doesn't bother me any.
    • fao_ 7y ago
      As someone else mentioned, he likely hasn't really cured himself of anything. Regardless, he could have just taken lactase and called it a day
• buboard 7y ago
  interesting .. didn't know that it was already possible
• Japhy_Ryder 7y ago
  He could've also just, y'know, stopped consuming garbage lactose.
  • samfriedman 7y ago
    How can one tell the difference between good and "garbage" lactose, then?
    • Japhy_Ryder 7y ago
      Simple: All lactose is garbage.
• dooglius 7y ago
  There are some pretty big methodological issues here, and some of the comments make good cases that this didn't actually do anything.
• pmarreck 7y ago
  > cure himself of lactose intolerance Which is funny, because lactose intolerance is actually the norm, before a bunch of ancient Europeans decided that they'd figure out how to live off cows and there was selection pressure to extend lactose tolerance out of infancy where it normally remains
  • SamBam 7y ago
    You keep using this word "normally"... Are you saying that natural selection is not normal if it was only a few thousand years ago?
    • sanxiyn 7y ago
      "Normally" simply means majority of humanity is lactose intolerant.