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Science

Self-Experimenting Virologist Defeats Breast Cancer With Lab-Grown Virus Treatment (nature.com) 84

A University of Zagreb virologist treated her own recurring breast cancer by injecting laboratory-grown viruses into her tumor, sparking debate about self-experimentation in medical research. Beata Halassy discovered her stage 3 breast cancer in 2020 at age 49, recurring at the site of a previous mastectomy. Rather than undergo another round of chemotherapy, she developed an experimental treatment using oncolytic virotherapy (OVT).

Over two months, Halassy administered measles and vesicular stomatitis viruses directly into the tumor. The treatment caused the tumor to shrink and detach from surrounding tissue before surgical removal. Post-surgery analysis showed immune cell infiltration, suggesting the viruses had triggered an immune response against the cancer. Halassy has been cancer-free for four years. OVT remains unapproved for breast cancer treatment worldwide. Nature adds: Halassy felt a responsibility to publish her findings. But she received more than a dozen rejections from journals -- mainly, she says, because the paper, co-authored with colleagues, involved self-experimentation. "The major concern was always ethical issues," says Halassy. She was particularly determined to persevere after she came across a review highlighting the value of self-experimentation.

That journals had concerns doesn't surprise Jacob Sherkow, a law and medicine researcher at the University of Illinois Urbana-Champaign who has examined the ethics of researcher self-experimentation in relation to COVID-19 vaccines. The problem is not that Halassy used self-experimentation as such, but that publishing her results could encourage others to reject conventional treatment and try something similar, says Sherkow. People with cancer can be particularly susceptible to trying unproven treatments. Yet, he notes, it's also important to ensure that the knowledge that comes from self-experimentation isn't lost. The paper emphasizes that self-medicating with cancer-fighting viruses "should not be the first approach" in the case of a cancer diagnosis.

Self-Experimenting Virologist Defeats Breast Cancer With Lab-Grown Virus Treatment

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  • I'm all grown up (Score:3, Insightful)

    by Iamthecheese ( 1264298 ) on Monday November 11, 2024 @11:53AM (#64937109)
    I don't need the government, my doctor, or anyone else to hide information for my own good.
    • Re: (Score:2, Insightful)

      by saloomy ( 2817221 )
      The pharmaceutical industry does though. They can't let you know it.
      Quite frankly, it is disgusting. Why should the government forbid you from doing something to yourself. If you want to try something experimentally, and some doctor or laboratory or research institute is willing to let you try it, what business is it of anyone else's? Let alone the government? Maybe make a rule that all research material and related data be made available, so nothing is held back from making an informed decision. But perh
      • by Kisai ( 213879 )

        We don't need people self-experimenting with diseases when they aren't already knocking on deaths door, that's how we get the next plague.

        +1 It's fine if you're probably gonna die anyway and you can self-isolate while doing so.
        -1 If you do survive, but you somehow create the T-virus (Resident Evil) that turns people in to Zombies, or Republicans.

    • by Smidge204 ( 605297 ) on Monday November 11, 2024 @12:24PM (#64937201) Journal

      There's a whole lot of people who would agree with you if they hadn't died from attempting some form of DIY treatment for an otherwise perfectly manageable disease.

      While I'm not de-facto against people experimenting on themselves for science, it's not something I feel we should be actively encouraging. The proper way forward here would have been to try replicating the results in a more acceptable manner (e.g. in mice or whatever) and get that published so the technique is out there and documented. Save the story about injecting yourself first for your memoirs.
      =Smidge=

      • by Reckoning ( 10502566 ) on Monday November 11, 2024 @12:31PM (#64937223)
        Bear in mind a lot of those self treatment deaths were from snake oil salesmen deceiving consumers for a buck, not actual scientists experimenting on themselves. Most scientists are fully aware of what could go wrong.
        • I am all for the government recommending, testing, and giving warnings, but at the end, you have a right to be stupid. Your body, your choice.
          • Re: (Score:2, Informative)

            by quonset ( 4839537 )

            Your body, your choice.

            Not according to the Supreme Court. You do not have the right to privacy as outlined in the 9th Amendment, nor do you have bodily autonomy. In fact, a corpse has more rights than you do. No organ can be removed from a corpse without that person's consent, even if use of the organ would save another life.

          • Re: (Score:2, Informative)

            Your body, your choice.

            * Does not apply to abortion or cannabis

          • by Sark666 ( 756464 )

            Hmm, but given her profession and what she has access to, maybe there has to be constraints. Say she was doing other gain of function self-experiments that could somehow pose a danger to others? Probably unlikely, I dunno, but I'm not sure if all constraints should go out the window. I still think what she did was brave, and shouldn't have the info suppressed. We should learn what we can from it.

        • Re: I'm all grown up (Score:5, Informative)

          by JoshuaZ ( 1134087 ) on Monday November 11, 2024 @03:31PM (#64937791) Homepage
          To expand on your comment, there's also a large history of scientists doing this successfully. And we've learned a lot from them. For an excellent book on this history of medical self-experimentation by scientists and doctors see Altman's "Who Goes First?"
          • Self-experimentation needs to be allowed since it's part of the right to bodily autonomy. However publishing the results does have some reliability issues, a sample size of 1 and they're only published by people who survived.

        • It's also particularly egregious in the case of cancer, when you get told you'll be dead in 6-12 months it kinda focuses you on just one thing which is not being dead in 6-12 months, at which point you're ready to try absolutely anything. So I can see why medical journals would be reluctant to publish sample-size-1 experiments which a ton of cancer patients will then leap on as their only hope.
        • by AmiMoJo ( 196126 )

          People facing a painful death or long term suffering are often willing to try risky things. It's just human nature, especially when any properly licensed treatment may be decades away.

          It would help if it was easier to get onto studies trying out new treatments, or if doctors were more able to offer experimental ones.

    • Re: (Score:3, Insightful)

      by fahrbot-bot ( 874524 )

      I don't need the government, my doctor, or anyone else to hide information for my own good.

      Don't worry, the incoming administration will be hiding things for their own good and won't even be thinking about you.

    • Oh good grief, get over yourself. Not everything is about you.

      The ethical concerns have arisen for a variety of very good reasons. And yet, there are still venues to publish formally in addition to the various preprint archives available.

      You can get the research just fine, but no editor is obliged to publish it where you personally think it should be published.

    • by Kisai ( 213879 )

      The thing is, self-experimentation when you're looking death in the mirror is basically the better of two outcomes.

      "Yes, this worked for me, but I'm the patient looking from inside in these treatments". This is why a lot of lab animals are proxies for Humans, because it's unethical to give people a fatal disease and then treat it, yet a rat or a pig we don't consider "human". We don't experiment on Elephants or Dolphins because these animals are smarter than "pet" animals like cats and dogs, and fellow huma

      • Experimenting on elephants or dolphins would be economically unviable regardless of any other constraints. We do experiment on other primates mind you which are somewhat cheaper. Even then it is generally only in late stages of treatment development that you get to primates because it's to expensive to do early stage testing in them.

  • Bad ass (Score:5, Insightful)

    by ebonum ( 830686 ) on Monday November 11, 2024 @12:05PM (#64937149)

    Get over it. Procedures and data needs to be published. That's kinda what real scientists do. Everyone in the field understands what it means to have a sample size of 1.

    And yes. This chick deserves the bad ass of the year award. How do you get more awesome than that?

    • 100% bad ass. I logged in to see if I had mod points for you. No points so you get a reply in agreement.

    • Now that she knows it works I'm sure she can easily design animal studies to demonstrate it and publish those. Unless it doesn't actually work and something else caused her recovery, of course...
    • by HiThere ( 15173 )

      This is actually a variation of an approach that was used before antibiotics became available. It's not *really* surprising that it worked, but making it work dependably...now that's another matter.

      IIUC, the idea is that this works because the immune system already recognized measles as an enemy, so it attacks cells that display signs of measles infection, and breaks them open. Then it recognizes "inappropriate" molecules released by the broken cell as signs of an invader, and starts attacking cells that

      • Re:Bad ass (Score:4, Insightful)

        by SuiteSisterMary ( 123932 ) <slebrun@gUUUmail.com minus threevowels> on Monday November 11, 2024 @01:34PM (#64937399) Journal

        Lets be honest; both chemotherapy and radiation therapy are 'very iffy approaches.'

        If this approach is slightly less iffy, that's a good thing.

        • Lets be honest; both chemotherapy and radiation therapy are 'very iffy approaches.'

          If this approach is slightly less iffy, that's a good thing.

          Exactly. This is just another variation on the theme "lets see if we can hurt the cancer more than we can hurt the patient". Sadly most cancer treatments fall into that category.

          • It doesn't seem like this hurt the patient at all (unless you count the pain of piercing the skin with a needle).
      • Part of the issue with this (and also phage therapy) is that it is essentially a bespoke treatment, which is not amenable to the same sort of mathematical rigor we run mass produced vaccines and antibiotics through for determining effectiveness. If I have a machine that spits out stamped gears we can use math to estimate that they are 'good enough'. Having a machinist make the gear as a one-off may even have the chance of making a better gear, but we can't be as sure that Machinist B makes ones as good as
        • Which is a problem for science. Because the idea that probabilities of a population apply to the individuals is fallacious. Likewise, requiring that a treatment works to improve results in a random population is also fallacious. Its perfectly possible that a treatment works well for one person in one set of circumstances and harms another person in the population. Figuring out which is which is the problem. But it you rely on statistics as THE answer then you ignore the differences that resulted in differen
          • Well there's more than just the math, but the math is important. For, say, a vaccine for something universally lethal, you can't test that on humans. So, you test it on two distinct animal models. In short, if you protect each animal model at 10 times the lethal dose, then your vaccine works. Hooray. The math is used in determining where to set the dose to do things like mitigate the risk of the vaccine vs the benefit of the vaccine. A flu shot makes you feel crappy for a day, which is better than get
            • A flu shot makes you feel crappy for a day, which is better than getting the flu.

              Maybe, but one is guaranteed the other purely speculative. I haven't had the flu in a very long time. Does that mean I am immune? Probably not, its just that getting the flu is not a random event. You have to be exposed to it and I probably haven't been. At least not sufficiently exposed to overcome whatever immunity I have.

              There are other reasons than personal protection to get a vaccine, some have public heath benefits for everyone. We all but eliminated measles because we insisted children in schools be

      • Why would a measles virus cause an autoimmune disease? Do you have a reference for this?
        • by HiThere ( 15173 )

          One reason is that when the cells are destroyed, the immune system goes looking for a reason, and it's sorting through, among other things, the internals of the cells that were destroyed. Sometimes it will latch onto part of that as a cause.

          You might reasonably as "Why doesn't everything cause an autoimmune disease?", but the only answer I have is that the immune system is pretty good at recognizing whether something is just "a normal part of me", but it's not perfect.

    • Betcha these journals evaluate this paper with rigor and discernment. Unlike thousands of papers that come from the Establishment.

  • I get the impression researchers rationalize economically inspired prejudice as rationality/scepticism/ethics.

    Treatments which due to their nature are hard to monopolize and can only make it through trial through public money are instinctively bashed. The level of evidence and consistent beneficial effect they demand is absurdly much higher than for privately developed monopolized medicine.

  • by CubicleZombie ( 2590497 ) on Monday November 11, 2024 @12:16PM (#64937173)

    People with cancer are also particularly susceptible to dying from proven treatments.

    If you get cancer and you have some specialized knowledge of the field, go for it!

    Like the doctor that used his own immunotherapy research to cure his own glioblastoma [bbc.com]. That's a cancer that's 100% fatal anyways. Why not try it?

  • by GeekBoy ( 10877 ) on Monday November 11, 2024 @12:21PM (#64937187)

    Just wondering - the summary says she injected herself with Measles. Was that injected viral load alive or dead?

    • by HiThere ( 15173 )

      I expect that it was the live virus, and that she already had an immunity to measles. That's usually required for this kind of approach to work. (IIUC, it's a variation of an approach that was used before antibiotics became available. And there are LOTS of caveats. It frequently works, but not frequently enough to depend on, and there can be bad side effects.)

      • If whatever is being injected ends with mab there is the side effect of a lot of profit.

        If they just use a cheap generic vaccine, not so much.

  • ... and hope her treatment gets support.

  • so her body would recognize them and attack the cells carrying them? Great if it works. Insane if all she does is give herself new diseases.
  • by Tony Isaac ( 1301187 ) on Monday November 11, 2024 @12:26PM (#64937211) Homepage

    What actually caused the cancer to go away? It's well known that people regularly defeat cancer with no medical treatment whatsoever. https://medicalxpress.com/news... [medicalxpress.com] And the presence of immune cells in the tumor...does this support her hypothesis that the immune cells killed the tumor, or that the immune cells were attacking the viruses she injected?

    I don't know, but I do know that I wouldn't want to risk my life based on the results of a study with a sample size of 1.

    • by Sertis ( 2789687 )
      Most true discoveries happen with a sample size of 1, the importance is having a way to track and find these discoveries so that researchers in that field can discover these and weigh them appropriately for their own research. They are absolutely correct that this shouldn't be a basis for everyone performing self-treatment but knowledge is knowledge, it's up to the researchers doing the follow up work to determine if it's useful or not. Currently this knowledge is being suppressed for the greater good (la
      • I don't have a problem that this woman did the experiment, and I'm happy that it seemed to work for her. As for "knowledge" I'm not sure that we've actually gained any knowledge at this point. We have a hypothesis that has a (single) positive test result. My only concern, is that we consider such results with appropriate skepticism. The article was criticizing the journals for not publishing her work. I think I agree with the journals on this one. Publishing this kind of study gives it more weight than is w

    • I don't know, but I do know that I wouldn't want to risk my life based on the results of a study with a sample size of 1.

      IMO the important thing here isn't the efficacy of the treatment - that may be legitimate or a coincidence, and there's no way to tell right now. The important thing is the ethical consideration, which you've obliquely referred to here.

      If I had recurring cancer which carried with it a high incidence of both additional disfigurement and possible death, I might well be willing to undergo such an experimental treatment. And the self-styled ethicists who are objecting to a) what this brave woman did, and/or b)

      • by flink ( 18449 )

        I think also the ethics of studying cures for terminal diseases isn't great no matter what. Scientific method dictates that you do a double blind study, but in the case you hope for where the treatment works, you've signed the death warrant for at least half of the study group who are in the control.

      • by gweihir ( 88907 )

        The other thing here is that the ethicists are talking about a general situation, while this clearly was a special one and it is not hard in any way to see it was a special one. The journals that refused to publish were just cowardly avoiding the discussion. Definitely not run by the scientifically-minded.

      • by ceoyoyo ( 59147 )

        The ethical concerns are real and important. The current set of ethical requirements for research were arrived at through a lot of really bad things happening.

        Consider, if you can avoid all the headache of getting ethics approval by self-experimentation, do you think that's an incentive for other researchers to experiment on themselves? Maybe an incentive for some 20 year old grad student to just try it out on themselves to make their supervisor happy?

        And in the end, all you get is a case study. Scientifica

      • I do think there is an ethical difference between doing an experiment on yourself, and doing one on another person. Still, even if you are a doctor, and nothing else has worked on such a person, the options for experimental treatment become more ethically acceptable.

    • T cell response, same as if she'd been lucky enough to clear it herself without treatment. Flagging the cancer with a virus makes it stand out to the immune system, which is already trying to kill cancer and virus infected cells. Successful cancers are the ones that hide better from your immune system.
    • The tumor was operated out, according to the article. Also, it was a return case, so her immune system wasn't capable of taking care of it just by itself.
      • it was a return case, so her immune system wasn't capable of taking care of it just by itself.

        This is a reasonable hypothesis, but certainly not proven by her experience.

  • by kiviQr ( 3443687 ) on Monday November 11, 2024 @12:31PM (#64937221)
    Self-experimentation is ingrained in science. As long as it is somewhat controlled it is better for science than millions of dollars spent on magical pills people buy out of desperation.
    • by gweihir ( 88907 )

      Indeed. A major part of Science is smart people being fed up with some situation they face and trying to do something about it.

  • If someone wants to test a hair regrowth serum or something to make adults grow taller or something on themselves, that's not how we do things. That basically coerces other researches to do the "shortcut way" instead of the expensive lab rat and monkey trials before getting all that sweet, sweet drug patent royalties. But if it's a life-threatening illness, do they really expect you to not do everything in your power to stop it? Plus, it worked. I feel like this should be the exception.
    • by gweihir ( 88907 )

      This is _very_ clearly an exception. The ones refusing to publish are just cowards and took the easy way out. Require a major discussion of the ethics that make clear it is a special situation, but publish. But that takes some stones. These have gotten rare. Many businesses have gotten very risk-aware.

  • There is a long lovely history about self experimentation and medicine. In the past, it has been quite important. For example, the same bacteria that causes cat scratch fever causes a completely different disease in high altitude people in the Andes mountain. It was proven that itâ(TM)s the same bacterium As for this current news story. It just simply somebody telling the story about a scientist to appropriately got rejections from journals Thereâ(TM)s nothing particularly new or about this the
  • A well-documented experiment with a sample size of 1 is fully worth publishing, especially for hard to replicate and expensive experiments.

    I mean conducting oncolytic virotherapy in-vivo isn't like observing coin flips or the value of 'g'.

  • They believed that stomachs ulcers could be caused by bacteria, specifically helicobacter pylori. Marshall deliberately infected himself, got ulcers and then cured them.

    They got a Nobel prize.

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