10 ms·

Scientist treated her own cancer with viruses she grew in the lab

692 points by dataminer 2y ago

ETH_start 2y ago
Excellent, now this should be legalized for treating other people's cancers too. We're allowing millions of people to die unnecessarily by restricting the right to treatment.
imchillyb 2y ago
[flagged]
- mikeyouse 2y ago
  It’s uninformed conspiratorial nonsense like this that gets RFK into any other position other than the jail cell that he belongs in after what he did in Samoa. She’s a virologist, what in the world would the AMA have to do with “unloading repercussions” on her? Stealing this quote (and am prepared to have to say it a lot in the future) but it’s easy to think everything’s a conspiracy when you don’t know how anything works.
  - hello_computer 2y ago
    Sure. It was RFK. Nevermind the facts: “On 6 July 2018 on the east coast of Savai'i, two 12-month-old children died after receiving MMR vaccinations.[8] The cause of death was incorrect preparation of the vaccine by two nurses who mixed vaccine powder with expired anaesthetic instead of the appropriate diluent.[20] These two deaths were picked up by anti-vaccine groups and used to incite fear towards vaccination on social media, causing the government to suspend its measles vaccination programme for ten months, despite advice from the WHO.[21][19] The incident caused many Samoan residents to lose trust in the healthcare system.[22]” https://en.wikipedia.org/wiki/2019_Samoa_measles_outbreak#Vaccine_hesitancy https://en.wikipedia.org/wiki/2019_Samoa_measles_outbreak#Va...
    - mikeyouse 2y ago
      Guess which anti vaccine groups used two unrelated deaths to inundate the island in antivax propaganda and caused a measles outbreak that killed over 80 children? https://childrenshealthdefense.org/defender/lsamoa-medical-freedom-hero-court-case-dismissed/ https://childrenshealthdefense.org/defender/lsamoa-medical-f... https://www.instagram.com/p/BySGpZ_HXo_/?hl=en https://www.instagram.com/p/BySGpZ_HXo_/?hl=en Lying about the efficacy of the MMR vaccine to convince parents to not vaccinate their kids is one of the more evil things you can do.
      - hello_computer 2y ago
        [flagged]
        mikeyouse 2y ago
        And if RFK’s org hadn’t taken up a medical error and spent millions in advertising to convince Samoans that it was the vaccine and not human error that caused the two deaths, there would be two dead kids and not over 80. How in the world can anyone defend measles vaccine truthers in this day and age?
        hello_computer 2y ago
        Whatever happened to "my body, my choice"? Pro-lifers, war-on-drugs, going all the way back to prohibition--drawing hard lines on interventions with stochastic outcomes is tyrannical. After taking my pre-reqs with the nurses 25 years ago, I'd also hesitate to have most of them inject me with anything--not as an "antivax" position, but as an "I don't trust party girls with hygiene, algebra, or needles" one.
- nradov 2y ago
  Relax. The AMA has no regulatory or enforcement power. They don't care and won't do anything.
evanjrowley 2y ago
My biology teacher knew a guy who did this to cure his wife's cancer, and that was back in 2008. How bizarre that this hasn't become a standard treatment after all this time.
- goda90 2y ago
  It's likely that sometimes it goes poorly in bigger sample sizes. Maybe the viruses have a chance of causing a cytokine storm which can kill the patient.
  - gpm 2y ago
    There's a long history of OVT clinical trials, if someone's bored and interested they could try tracking down why they (mostly*) failed. See table 1 for a list (as of 2021, probably incomplete) https://pmc.ncbi.nlm.nih.gov/articles/PMC7913179/ https://pmc.ncbi.nlm.nih.gov/articles/PMC7913179/ * As the article points out, there is one approved OVT therapy.
- sidewndr46 2y ago
  wouldn't that almost certainly be a crime if in the US?
  - vikramkr 2y ago
    In the US? No you can do pretty much whatever you want here.
    - sidewndr46 2y ago
      To yourself? Mostly. Manufacture and possession of restricted substances is illegal, but administration of them to yourself is not illegal. In other words, being high in your own home isn't illegal. But if you administer them to someone else it could be considered commerce which is under the purview of the government. Even growing corn on your own land to feed to your own pigs is considered commerce according to SCOTUS
- 2y ago
irrational 2y ago
I’m sure this has been written on extensively, but I’m not aware of the conclusions. Is it considered unethical to do medical experiments on yourself without any oversight like you would find in a typical human subject trial?
- odyssey7 2y ago
  It is considered not definitive, given the sample size of 1, confirmation bias, amped-up placebo effect, lack of oversight, conflict of interest when the patient is the investigator… but you’re usually allowed to do what you want with your own body.
  - card_zero 2y ago
    The relevant Wikipedia page says all that too, but then confuses matters by listing about 50 notable examples. https://en.wikipedia.org/wiki/Self-experimentation_in_medicine https://en.wikipedia.org/wiki/Self-experimentation_in_medici...
    - odyssey7 2y ago
      Not definitive ≠ useless
- zbyforgotp 2y ago
  From the article: „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.”
  - ta988 2y ago
    This is bullshit, especally since she also got "traditional" therapy after. This is just a statement by someone that is desperately looking for a negative point. You have to have access to equipment and skills that not many people have. And then if they have it, that's one more thing to try, the effects are quick if it works and you can revert to radio/chemo therapy if needed.
NotGMan 2y ago
>> In choosing to self-experiment, Halassy joins a long line of scientists who have participated in this under-the-radar, stigmatized and ethically fraught practice. “It took a brave editor to publish the report,” says Halassy. Sad state of science that real results cannot be published because it goes against the current dogma.
- zacharycohn 2y ago
  Rather than turn this into some weird culture war thing, I suggest you finish reading the article. That is, in no way, why it had difficulty being published.
  - eyphka 2y ago
    I would encourage reading about Jim Allison (the nobel prize winner in medicine for immunotherapy) and his difficulty having his research acknowledged / getting funding as an immunologist working in cancer research. Wired magazine did a piece on him detailing how funding for this type of research was largely stonewalled because it ignored status quo ideas on cancer treatment. My understanding is that traditionally ovt research was nearly impossible to get funding for but has begun to become easier as the status quo research and researchers from the 2000s have been replaced. “A new scientific truth does not triumph by convincing its opponents and making them see the light, but rather because its opponents die, and a new generation grows up that is familiar with it.”
    - puskavi 2y ago
      Yeah, imagine all those million dollar cancer drugs that dont really work, when you could just inject traditional vaccines to tumor
- ethbr1 2y ago
  > because it goes against the current dogma. That's not the issue. The issue is that it's reporting results from self-experimentation, which simply from an objective results perspective has many conflicts of interest and accuracy.
OutOfHere 2y ago
Why is this not accelerated for every single cancer patient with a tumor?
- permanent 2y ago
  in short, money and ethics
  - vikramkr 2y ago
    The former is a reason why there actually is a lot of research into this already/couple drugs approved (cancer is usually very profitable), the latter is why all drugs, not just these, need extensive clinical trials and strong regulation. Because it's measles virus and herpes virus etc etc, and often genetically engineered, so the safety risks are ... obvious
  - OutOfHere 2y ago
    Real ethics isn't what you think it is. Real ethics is in getting the treatment asap to everyone that it can save.
- vikramkr 2y ago
  It's an active area of research and as the article says there's already one approved on the market in the US. https://wikipedia.org/wiki/Oncolytic_virus https://wikipedia.org/wiki/Oncolytic_virus
- jeroenhd 2y ago
  Scientists are working on it. They're not done turning this approach into a generic, off the shelf treatment, though. As the article states, this isn't necessarily new technology. Having access to a lab and being an expert in the subset of virilogy used as part of the treatment definitely made it easier for this specific scientist to get her hands on this treatment. For someone else to get the same, they'd need to hire scientists dedicated to curing them, and that just doesn't scale to the amount of cancer patients in any normal hospital. Even then it didn't entirely cure her; the tumors were reduced in size but normal cancer treatment took care of the rest. Give it a few years, maybe decades. A lot of research is being done in this area of medicine and I can't imagine such biotechnology not becoming more widespread in the future.
ziofill 2y ago
This is the epitome of self-reliance and kickassery. Respect.
- TZubiri 2y ago
  Getting year 1 or 2 of medicine in, in addition to providing good general knowledge, would be a good insurance bet, if you ever, or a loved one has an uncurable disease, you can spend your life trying to cure it, and you have 1 or 2 years of advantage. Pretty sure that studying a career with such a specific objective in mind will have a much more useful effect in hyperspecialized branches (so not Primary Care) than studying generally out of school and only picking your branch a couple of months before it is required. You absorb the general knowledge with in the context of your specialization.
  - GuB-42 2y ago
    Isn't year 1 or 2 of medicine just about knowing general facts about the body? Like the names of muscle and bones. Actually treating diseases coming much later, and practical knowledge is mostly learned as an intern. All that to say that doing 1 year of med-school may not be that useful unless you intend to do 10 more and become an actual doctor. Maybe nursing would be a better bet: shorter studies, and more practical.
    - TZubiri 2y ago
      "Like the names of muscle and bones" Yeah, and veins and bodies, a lot of them. But that's just 1 subject, anatomy. Pretty sure there's other useful subjects. And there's also the benefits not from the actual knowledge gained, but by the ability to learn higher order subjects, since they may have dependencies, you can probably orient learning towards the parts of the body affected. The nurse idea is pretty good. Same with imaging technician. I'd venture a guess that there's a lot of year 1 and year 2 subjects that would be equivalent.
siliconc0w 2y ago
The one silver lining of having such a terrible diagnosis should be that you are immediately unbound from normal FDA requirements and are able and try anything in the pipeline that might work.
- rfrey 2y ago
  With the caveat that they can only be charged a nominal fee, say the actual production cost of the drug. It would be good to avoid fraudsters stripping desperate people if all their assets
  - danielmarkbruce 2y ago
    This is an hilariously straightforward and brilliant idea. It's no holds barred, but the goal has got to be a real, approved drug in the future. Not profits right now.
  - cogman10 2y ago
    I'd probably go further and say it must be free of charge. The problem with a nominal fee is fraudsters can be really clever at finding ways to bump up production costs. You might give the company doing the research relaxed liability, but even then you'd want to be careful. After all, you wouldn't want a coal mining operation conducting "research on lung cancer treatment" by sending in miners without PPE. If this is a legitimate research into curing cancer then eating the cost to treat test subjects is the least a company could do. The results are what's can be worth a lot of money.
    - cogman10 2y ago
      Actually, thinking about this further, even free of charge could be problematic. I can 100% see a "cancer research and spiritual healing" clinic popping up that uses the promise is a cure as a way to get someone in the door so they can later be sold on energy healing to increase effectivity of the sugar pill they give away. Fraudsters simply love preying on the desprate.
AtlasBarfed 2y ago
It's my opinion that this shouldn't be a gee whiz story. We've had technology/ science for this for a while, but the medical capitalism establishment doesn't want it. Of course because it values labor too much. They want drugs. Drugs are a monopoly, drugs are MASSIVE profit margins, drugs are simple. And drugs are the means that the FDA knows how to approve treatments. This? It would take armies of skilled labor techs. It would also probably have to be offshore to avoid the US legal system. But in my opinion this is the path to "the cure" for cancer.
- hello_computer 2y ago
  The problem with immunotherapy--going all the way back to Imhotep--is the same problem with antibiotic resistance: directed evolution. Kill the cancer cells that are susceptible to one treatment (be it chemo, radiation, immune system, or something else), then the cancer cells that are not susceptible survive and continue to multiply. We get a remission, but it comes back later with a vengeance. They know this, so oncology has pivoted to "combination therapy", but many of the official treatments are so toxic that combining them may kill you faster than the cancer. But you are right about the commercial aspect. More money in treatments than in cures. If a cure ever comes, it is more likely to come from "the people" sharing notes over the internet than Pfizer or Novo Nordisk. But with the amount of money involved, it is an open question as to how long such an internet--where people are allowed to freely discuss things--will survive.
- deleted 2y ago
  [deleted]
rollulus 2y ago
I believe this is the HN discussion of their publication: https://news.ycombinator.com/item?id=41467503 https://news.ycombinator.com/item?id=41467503
wslh 2y ago
The main point of the Nature article is, frankly, stupid. Imagine if a close friend or family member (brother/sister, child, mother, dather, etc) passed away when a cure was within reach, and your oncologist either lacked the insight or the ethical commitment to tell you. In a conversation like this, I’d want to tag people who’ve lost loved ones to highlight the importance of ‘skin in the game.’ This issue isn’t abstract for those who’ve experienced loss firsthand.
- sonotathrowaway 2y ago
  It was very odd reading an article where people were debating the ethics of a woman saving her own life, as if it was potentially a shameful act.
inglor_cz 2y ago
In a very similar case, Australian oncologist (specializes in melanoma treatment) Richard Scolyer underwent a modified melanoma treatment for his glioblastoma multiforme. His friends from the same melanoma department treated him. He is still alive and without recurrence more than one year after the original diagnosis, even though his GBM was particularly aggressive. https://www.theguardian.com/books/2024/nov/03/brainstorm-richard-scolyer-book-interview-brain-cancer https://www.theguardian.com/books/2024/nov/03/brainstorm-ric...
TZubiri 2y ago
Absolutely metal and the person I would aspire to be. I can't imagine a higher motivation to study and find a cure than to save yourself, with the possible exception of saving a loved one. As other have mentioned, finding a cure for a specific case is easier and has less regulations than finding a general cure.
- stouset 2y ago
  A “general cure” for cancer is a pretty tall order. Cancer isn’t one disease, it’s a catch-all term for a bunch of vaguely related ones. Maybe this is a bit of a stretch but it’s a bit like trying to find a way to end deaths from “accidents”. Drowning, falling off a ladder, and a car crash are all a type of accident but it’s really hard to find a thread tying them all together to deal with it generally.
  - swayvil 2y ago
    If you could increase the general health of the person. Like, a lot. That might work as a general cure.
    - eptcyka 2y ago
      Preventative measures are not cures. You can’t eat your veggies out of stage 2 cancer.
  - zkelvin 2y ago
    Every day, something like 100 cells in your body become cancerous, but your immune system shoots them down before they can cause any harm. This is effectively a general prophylactic for cancer, so it's not unreasonable to think that we could discover a general cure for cancer (and that something immunotherapy is a promising candidate).
    - Amarok 2y ago
      Once the cancer starts to freely mutate it becomes much harder to contain. It's not just cleaning up defective cells, it's full on evultionary warfare between your immune system and the cancer.
abeppu 2y ago
So, if the ethical problem is not attempting self-treatment, but that publishing about self-treatment will lead others to make potentially dangerous choices ... then isn't the publishing process, and its selection bias for positive results really the problematic part? If we never hear about people who attempt self-treatment which then doesn't work, and we occasionally hear about people who were successful, and there's no larger systematic study, then people will get an unrealistic view of the chances of success.
- tonetegeatinst 2y ago
  I mean this would also imply that researchers have an incentive to publish. The incentive to publish and see results that are "good" and "potential treatments" for a disease mean any funding or research grant is seeing a financial motivation to conduct research, and because good outcomes are seen favorably by investors that creates bias and conflict.
theptip 2y ago
> “I think it ultimately does fall within the line of being ethical, but it isn’t a slam-dunk case” I concede that I haven’t thought as deeply about this as ethicists, but I strongly suspect that the cost/benefit calculation here is way over-cautious if you think the theoretical induced harm is remotely close to the benefits of publishing. The history of science is already full of self-experimenters, so at the margin publishing is unlikely to move the needle. Furthermore, patients with cancer diagnoses are already extremely motivated to try whatever experimental treatments the FDA will permit; self-experimentation is already supply-constrained (of experiment opportunities) and there is excess demand. Again fuzzy concerns about population-level harms overrule individuals’ rights to seek treatments for their fatal diagnoses.
- MostlyStable 2y ago
  I've been at least partly convinced that "medical ethics" very frequently looks nothing at all like what most people consider to be ethical. As far as I can tell, it exists mostly to prevent anyone from getting in trouble in the case that something goes wrong (which often means "do nothing"), rather than actually consider what is or is not ethical. It seems to be completely infected by the Copenhagen Interpretation of Ethics [0] So, while they aren't always wrong, my default opinion is that, until given compelling evidence to the contrary, I shouldn't worry too much about what medical ethicists think on a particular topic. Even when they are right, they are usually right in a way that most normal people can easily see that it is correct. [0] https://web.archive.org/web/20230302022931/https://blog.jaibot.com/the-copenhagen-interpretation-of-ethics/ https://web.archive.org/web/20230302022931/https://blog.jaib...
  - wizzwizz4 2y ago
    It exists because, in the very recent past, a lot of shady stuff has happened just because people were curious. The “Tuskegee Study of Untreated Syphilis in the Negro Male”; Dr. Chester Southam injecting cancer cells into unconsenting patients; Josef Mengele's experiments in Nazi concentration camps… Maybe they overcorrected, but there's good reason!
xyst 2y ago
> but that publishing her results could encourage others to reject conventional treatment and try something similar, says Sherkow. I don’t see the ethical dilemma proposed here. If patient or doctor exhausts through traditional medicine, and have the financial means and expertise to do “self experimentation”. There is nothing wrong with this. As long as the self experimentation is limited to the patient themselves (1), then there’s no ethical issue. edit; although with recent change in political atmosphere in USA, there’s probably some group out there that thinks this is “playing god” or some bs.
- devjab 2y ago
  The ethical dilemma here is probably based around “individual vs community”, but it’s hard to say when there is no knowledge of how it actually affects the “community” in the long term. The risk is that inspiring people to self-treat might cause more harm than good, but again, nobody really knows. I’d argue that it was more of a liability refusal from the journals, disguised as ethics. It should probably noted that it’s not an outright lie though. Again it’s hard to say considering we don’t have access to the refusals.
xelamonster 2y ago
I think I agree with you in this case, but I'm not so sure about a lot of the examples given in that linked article. BHH Labs: pretty obvious to me it's ethically wrong to find the most desperate people around and pay them less than minimum wage to staff your event... Uber: yes there was a need here, yes the experience offered by traditional taxis is awful and their service is strictly better where available, that really is not related to the ethical concerns I have with them. They're cheaper because they underpay drivers, and quite often they'll come into an area and drive out all the taxis then all but disappear themselves, leaving the town with zero practical transport options.
- some_random 2y ago
  I actually agree with you on BHH Labs but for a completely different reason. We have minimum wage laws for a reason, and by working for less than that they were undercutting other people's labor. Without that externality I don't really see an issue with it. Underpaying drivers is not part of the Uber discussion here whatsoever, they're specifically talking about raising prices for inclement weather to incentivize more drivers to accommodate more passengers. If they're paid $10 vs $11 an hour or $100 vs $110 an hour is irrelevant for discussing the ethics in this case.
  - xelamonster 2y ago
    I'm a bit unclear what you're trying to say re BHH or if that actually is a different reason. Totally fair point on Uber though, I didn't read that one closely enough, but I'll still argue that's unethical for a more relevant reason: surge pricing reinforces inequality by blocking less wealthy people from access to services while those who can afford it are unaffected. The distribution of who is able to use the service under heavy demand is massively skewed towards the class of people that most likely would be just fine without it while the ones most heavily impacted by a missed appointment or being late to work or whatever are the ones left out to dry.
- AnthonyMouse 2y ago
  > They're cheaper because they underpay drivers I don't really get this one. If you drive for Uber, you're going to have a pretty good idea what you're getting paid, and if you don't like that amount then you're under no obligation to keep doing it. People like to do the math on this using some kind of midsized SUV getting 20ish MPG and that will need major repairs before 150k miles, whereas the people doing it sensibly are using full electric cars or 50 MPG hybrids from reliable makes that will do 500k miles, for which the math is very different. There are also people who do it part time and thereby have very different costs because they're e.g. accepting rides for trips that they themselves would have made alone regardless. These people are not being "underpaid", they're getting nearly free money. And when everybody knows the deal ahead of time -- or can reasonably have figured it out within a week -- how can they be underpaying people (i.e. paying them less than competing employers) and yet people still choose to do it? Unless it's not as bad a deal as it's made out to be for those people. > then all but disappear themselves, leaving the town with zero practical transport options. Do they leave or are they forced out? Because it's an app; it doesn't make a lot of sense for them to leave for no reason.
lollobomb 2y ago
It is so sad that there are so many vultures eager to make a profit out of desperate people with terrible diseases. This is why ethical guidelines and FDA regulations are for, after all. Of course it would be great to judge case-by-case (the scientist in the article is a real hero!). I would like to see a detailed cost-to-benefit study on the topic of allowing unapproved treatments for terminally ill patients.
- chriskanan 2y ago
  On the flip side, potentially very good treatments that can't be patented or won't yield a good profit margin are not explored because it is very expensive and time consuming to get approval for a drug or treatment.
hinkley 2y ago
Have we ever tried only injecting adjuvants used in vaccines into tumors?
philjohn 2y ago
If you're interested in other cases where people have self experimented and made a breakthrough, Roger Altounyan[1] is another fascinating case - he managed to discover sodium cromoglycate[2] was an effective treatment for Asthma. Arthur Ransome also used him to name one of the characters in his book Swallows and Amazons. [1] https://en.wikipedia.org/wiki/Roger_Altounyan https://en.wikipedia.org/wiki/Roger_Altounyan [2] https://en.wikipedia.org/wiki/Cromoglicic_acid https://en.wikipedia.org/wiki/Cromoglicic_acid
benreesman 2y ago
I can see possible ethical objections, for example if there was a risk that one of these self-ministered viruses was contagious (no idea) that would create scope for harming people. Of if it was a form of embezzlement or something, like there was funding for X and it got used for “treat my own cancer” that would be bad. But TFA seems to say that the ethical problem is “did experiment risky to the patient on myself”, which just seems strictly more ethically clear than “do experiment risky to the patient on other people”, which is a norm, but a regrettable necessity. Did I misread it?
- archon810 2y ago
  Plus the worst case seems to have been a minor fever.
philipwhiuk 2y ago
> Over a two-month period, a colleague administered a regime of treatments with research-grade material freshly prepared by Halassy, injected directly into her tumour. The real issue is the colleague helping, who is essentially acting as an unlicensed medical professional.
- tonetegeatinst 2y ago
  Counter argument: when my friend is sick and I reccomend to them a natural remedy....but not some prescription medication.....am I practicing unlicensed medicine? What about performing CPR?
- fallingknife 2y ago
  Any crime that ends in "without a license" is a crime I care very little about.
  - dpig_ 2y ago
    How about "flying a commercial airliner without a license" ?
    - fallingknife 2y ago
      If you didn't actually know how to fly that plane, they would be able to charge you with a lot of crimes that don't end in "without a license."
    - OutOfHere 2y ago
      No one will allow you to fly a commercial airliner without a license (without the law needing to be involved).
Narhem 2y ago
I’ve seen way too many of “scientists” and “researchers” try their own cures to various problems. Always shocks me how relatively simple solutions can be with the proper background but none of those would reach mass market due regulatory issues. Wonder what the policy would be if someone forced experimental medicine on someone without permission. How much do you think the patient should be allowed to sue for?
- BudWiser75 2y ago
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teyc 2y ago
The ethical issue is bunk. With the internet, using a journal as a gatekeeper no longer makes sense. We can, for example, require pre-registration of self trials so that null results can also be noted.
varelse 2y ago
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9cb14c1ec0 2y ago
Why are we having a discussion of ethical concerns around a scientist's successful experiments in treating cancer. I would note that she had multiple previous rounds of cancer, leading to a generally higher risk of chemo resistance. In choosing a different path, she made a valuable contribution to the health and wellness of all of us, which is unequivocally a good thing.
cwillu 2y ago
This sentence “Halassy joins a long line of scientists who have participated in this under-the-radar, stigmatized and ethically fraught practice.” is why I find it very hard to take the study of ethics seriously.
- OutOfHere 2y ago
  That's their brand of ethics; it's Ethics with a capital E, whereas real ethics lies in getting the treatment asap to as many people as possible who need it.
datahack 2y ago
Does possessing specialized knowledge or skills alter the ethical landscape of medical decisions? In other words, should someone with the capacity to administer an experimental treatment be held to a different standard than those without such expertise? Let’s say an individual opts for a less effective or accessible treatment due to personal limitations or lack of knowledge: does this alter the ethical weight of their decision? This question becomes more complex when treatments have varying degrees of risk and benefit. If a treatment is simply an off-label, it often goes totally unnoticed unless it carries an unacceptable risk. Under that condition, what happens when the treatment holds significant promise, potentially offering a curative outcome? But it doesn’t yet have medical trials? Does the prospect of a cure override the ethical concerns about its risks? Where is that line? When faced with a life-threatening disease like recurring cancer, what is the individual’s responsibility to society in considering the ethics of self-treatment? Should she have accepted less effective therapy that had already lead to a failure condition for the good of the rest of us even though we are barely effected? How do the potential benefits to the individual—such as survival—contrast with the potential societal harm, if any, in terms of bypassing established protocols or ignoring sanctioned research? At what point does the line blur between personal medical autonomy and the ethical implications of self-administered treatments? I really do wonder about these questions. I mean, the only difference between the ‘ivermectin cures cancer’ et al crowd and this lady is her degree of knowledge, so how do we deal with this ethically?
- flappyeagle 2y ago
  Let her do what she wants to herself. So many words spent waffling on something so simple
- valval 2y ago
  Am I tired or dumb? I know all the words but I have no idea what you’re saying. I can’t pick any two consecutive rows of text in your message that I understand.
hollerith 2y ago
Although I have no objection to a "right to try", it is probably not worth spending a lot of time discussing it because of how rare it is that there are no good safe responses to a desperate medical situation, but there is a dangerous one with a decent chance of success. The two chronically-ill friends I knew who put their chips on a drastic cure ended up dying pretty quickly from the cure. Neither even had a terminal illness, at least not one that would kill them any year soon: they just wanted to stop feeling miserable and to regain the ability to get stuff done.
- viraptor 2y ago
  Were they aware of the risk? As in, was it a conscious decision of "I'd rather take death over miserable rest of my life"?
- 0xDEAFBEAD 2y ago
  Can you tell us what the 'cures' were, to warn others?
gregwebs 2y ago
Immunotherapy seems to be where the big advances in cancer treatment lie. Coleys toxins were bacteria injections given to cancer patients over a hundred years ago that cured some of them. https://pmc.ncbi.nlm.nih.gov/articles/PMC1888599/ https://pmc.ncbi.nlm.nih.gov/articles/PMC1888599/
ChrisMarshallNY 2y ago
Wasn’t that how the whole Jeckyll/Hyde thing happened? In all seriousness, I’m glad it worked out for her. I have had a number of friends deal with breast cancer (in fact, one just told me she has been diagnosed with it, a couple of days ago). It sucks, but, fortunately, is a lot less deadly than it used to be.
FerretFred 2y ago
What a great achievement ! "discussion about the ethics of self-experimentation" Is this another variation of the assisted dying argument ? I,e. "It's my body". Personally (and Iemohasise that word), I feel that if it's the best option, you should go for it.
the5avage 2y ago
I once had a professor who worked on magnetic fluids. They can (potentially) be used to transport the medication of chemo therapy directly to the tumor, without destroying the rest of the body. Problem is it is basically impossible for research (without the money of big pharma) to ever try this - even though he works at a very big and respected University. It is not even possible to try this with people who will literally die to cancer anyway and who would want to try the treatment.
Horffupolde 2y ago
Antibiotic sulfamides were also tested and first proven to work this way where the chemist Domagk tried it on his own daughter who would have otherwise died.
HeavyStorm 2y ago
Anyone else can't click the X for the subscription ad on mobile? God I hate these dark patterns - I would refuse to implement it. Just don't show the freaking X!
dsign 2y ago
This is all well and good. What I don't understand is why there isn't a semi-regular regulation-evading "course of action" for people that can afford it. Say, billionaires. They could build an island in the Pacific and get whatever personalized and experimental treatment will cure their specific disease, at the cost of their fortunes. The rest of us could cheer from afar, learn from the experiments, and have our tax money used for scaling out.
mathgradthrow 2y ago
Self experimentation is not ethically fraught. Informed consent is possibly only achieved in this instance.
JOANEDWIN 2y ago
[flagged]
adamredwoods 2y ago
So the article states that the virus was injected directly into the tumor for two-months. And then she was treated with surgery and a HER2 blocker. So this will not work for metastatic cancer at all. >> Analysis of the tumour after removal showed that it was thoroughly infiltrated with immune cells called lymphocytes, suggesting that the OVT had worked as expected and provoked Halassy’s immune system to attack both the viruses and the tumour cells. “An immune response was, for sure, elicited,” says Halassy. After the surgery, she received a year’s treatment with the anticancer drug trastuzumab.
djmips 2y ago
They mention that they wouldn't want people to try unproven treatments but with the success rate you see in cancer treatments, it's easy to get the idea that they are all unproven.

692 points by dataminer 2y ago

Excellent, now this should be legalized for treating other people's cancers too. We're allowing millions of people to die unnecessarily by restricting the right to treatment.

imchillyb 2y ago

[flagged]

mikeyouse 2y ago
It’s uninformed conspiratorial nonsense like this that gets RFK into any other position other than the jail cell that he belongs in after what he did in Samoa. She’s a virologist, what in the world would the AMA have to do with “unloading repercussions” on her? Stealing this quote (and am prepared to have to say it a lot in the future) but it’s easy to think everything’s a conspiracy when you don’t know how anything works.
- hello_computer 2y ago
  Sure. It was RFK. Nevermind the facts: “On 6 July 2018 on the east coast of Savai'i, two 12-month-old children died after receiving MMR vaccinations.[8] The cause of death was incorrect preparation of the vaccine by two nurses who mixed vaccine powder with expired anaesthetic instead of the appropriate diluent.[20] These two deaths were picked up by anti-vaccine groups and used to incite fear towards vaccination on social media, causing the government to suspend its measles vaccination programme for ten months, despite advice from the WHO.[21][19] The incident caused many Samoan residents to lose trust in the healthcare system.[22]” https://en.wikipedia.org/wiki/2019_Samoa_measles_outbreak#Vaccine_hesitancy https://en.wikipedia.org/wiki/2019_Samoa_measles_outbreak#Va...
  - mikeyouse 2y ago
    Guess which anti vaccine groups used two unrelated deaths to inundate the island in antivax propaganda and caused a measles outbreak that killed over 80 children? https://childrenshealthdefense.org/defender/lsamoa-medical-freedom-hero-court-case-dismissed/ https://childrenshealthdefense.org/defender/lsamoa-medical-f... https://www.instagram.com/p/BySGpZ_HXo_/?hl=en https://www.instagram.com/p/BySGpZ_HXo_/?hl=en Lying about the efficacy of the MMR vaccine to convince parents to not vaccinate their kids is one of the more evil things you can do.
    - hello_computer 2y ago
      [flagged]
      - mikeyouse 2y ago
        And if RFK’s org hadn’t taken up a medical error and spent millions in advertising to convince Samoans that it was the vaccine and not human error that caused the two deaths, there would be two dead kids and not over 80. How in the world can anyone defend measles vaccine truthers in this day and age?
        hello_computer 2y ago
        Whatever happened to "my body, my choice"? Pro-lifers, war-on-drugs, going all the way back to prohibition--drawing hard lines on interventions with stochastic outcomes is tyrannical. After taking my pre-reqs with the nurses 25 years ago, I'd also hesitate to have most of them inject me with anything--not as an "antivax" position, but as an "I don't trust party girls with hygiene, algebra, or needles" one.
nradov 2y ago
Relax. The AMA has no regulatory or enforcement power. They don't care and won't do anything.

evanjrowley 2y ago

My biology teacher knew a guy who did this to cure his wife's cancer, and that was back in 2008. How bizarre that this hasn't become a standard treatment after all this time.

goda90 2y ago
It's likely that sometimes it goes poorly in bigger sample sizes. Maybe the viruses have a chance of causing a cytokine storm which can kill the patient.
- gpm 2y ago
  There's a long history of OVT clinical trials, if someone's bored and interested they could try tracking down why they (mostly*) failed. See table 1 for a list (as of 2021, probably incomplete) https://pmc.ncbi.nlm.nih.gov/articles/PMC7913179/ https://pmc.ncbi.nlm.nih.gov/articles/PMC7913179/ * As the article points out, there is one approved OVT therapy.
sidewndr46 2y ago
wouldn't that almost certainly be a crime if in the US?
- vikramkr 2y ago
  In the US? No you can do pretty much whatever you want here.
  - sidewndr46 2y ago
    To yourself? Mostly. Manufacture and possession of restricted substances is illegal, but administration of them to yourself is not illegal. In other words, being high in your own home isn't illegal. But if you administer them to someone else it could be considered commerce which is under the purview of the government. Even growing corn on your own land to feed to your own pigs is considered commerce according to SCOTUS
2y ago

irrational 2y ago

I’m sure this has been written on extensively, but I’m not aware of the conclusions. Is it considered unethical to do medical experiments on yourself without any oversight like you would find in a typical human subject trial?

odyssey7 2y ago
It is considered not definitive, given the sample size of 1, confirmation bias, amped-up placebo effect, lack of oversight, conflict of interest when the patient is the investigator… but you’re usually allowed to do what you want with your own body.
- card_zero 2y ago
  The relevant Wikipedia page says all that too, but then confuses matters by listing about 50 notable examples. https://en.wikipedia.org/wiki/Self-experimentation_in_medicine https://en.wikipedia.org/wiki/Self-experimentation_in_medici...
  - odyssey7 2y ago
    Not definitive ≠ useless
zbyforgotp 2y ago
From the article: „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.”
- ta988 2y ago
  This is bullshit, especally since she also got "traditional" therapy after. This is just a statement by someone that is desperately looking for a negative point. You have to have access to equipment and skills that not many people have. And then if they have it, that's one more thing to try, the effects are quick if it works and you can revert to radio/chemo therapy if needed.

NotGMan 2y ago

>> In choosing to self-experiment, Halassy joins a long line of scientists who have participated in this under-the-radar, stigmatized and ethically fraught practice. “It took a brave editor to publish the report,” says Halassy. Sad state of science that real results cannot be published because it goes against the current dogma.

zacharycohn 2y ago
Rather than turn this into some weird culture war thing, I suggest you finish reading the article. That is, in no way, why it had difficulty being published.
- eyphka 2y ago
  I would encourage reading about Jim Allison (the nobel prize winner in medicine for immunotherapy) and his difficulty having his research acknowledged / getting funding as an immunologist working in cancer research. Wired magazine did a piece on him detailing how funding for this type of research was largely stonewalled because it ignored status quo ideas on cancer treatment. My understanding is that traditionally ovt research was nearly impossible to get funding for but has begun to become easier as the status quo research and researchers from the 2000s have been replaced. “A new scientific truth does not triumph by convincing its opponents and making them see the light, but rather because its opponents die, and a new generation grows up that is familiar with it.”
  - puskavi 2y ago
    Yeah, imagine all those million dollar cancer drugs that dont really work, when you could just inject traditional vaccines to tumor
ethbr1 2y ago
> because it goes against the current dogma. That's not the issue. The issue is that it's reporting results from self-experimentation, which simply from an objective results perspective has many conflicts of interest and accuracy.

OutOfHere 2y ago

Why is this not accelerated for every single cancer patient with a tumor?

permanent 2y ago
in short, money and ethics
- vikramkr 2y ago
  The former is a reason why there actually is a lot of research into this already/couple drugs approved (cancer is usually very profitable), the latter is why all drugs, not just these, need extensive clinical trials and strong regulation. Because it's measles virus and herpes virus etc etc, and often genetically engineered, so the safety risks are ... obvious
- OutOfHere 2y ago
  Real ethics isn't what you think it is. Real ethics is in getting the treatment asap to everyone that it can save.
vikramkr 2y ago
It's an active area of research and as the article says there's already one approved on the market in the US. https://wikipedia.org/wiki/Oncolytic_virus https://wikipedia.org/wiki/Oncolytic_virus
jeroenhd 2y ago
Scientists are working on it. They're not done turning this approach into a generic, off the shelf treatment, though. As the article states, this isn't necessarily new technology. Having access to a lab and being an expert in the subset of virilogy used as part of the treatment definitely made it easier for this specific scientist to get her hands on this treatment. For someone else to get the same, they'd need to hire scientists dedicated to curing them, and that just doesn't scale to the amount of cancer patients in any normal hospital. Even then it didn't entirely cure her; the tumors were reduced in size but normal cancer treatment took care of the rest. Give it a few years, maybe decades. A lot of research is being done in this area of medicine and I can't imagine such biotechnology not becoming more widespread in the future.

ziofill 2y ago

This is the epitome of self-reliance and kickassery. Respect.

TZubiri 2y ago
Getting year 1 or 2 of medicine in, in addition to providing good general knowledge, would be a good insurance bet, if you ever, or a loved one has an uncurable disease, you can spend your life trying to cure it, and you have 1 or 2 years of advantage. Pretty sure that studying a career with such a specific objective in mind will have a much more useful effect in hyperspecialized branches (so not Primary Care) than studying generally out of school and only picking your branch a couple of months before it is required. You absorb the general knowledge with in the context of your specialization.
- GuB-42 2y ago
  Isn't year 1 or 2 of medicine just about knowing general facts about the body? Like the names of muscle and bones. Actually treating diseases coming much later, and practical knowledge is mostly learned as an intern. All that to say that doing 1 year of med-school may not be that useful unless you intend to do 10 more and become an actual doctor. Maybe nursing would be a better bet: shorter studies, and more practical.
  - TZubiri 2y ago
    "Like the names of muscle and bones" Yeah, and veins and bodies, a lot of them. But that's just 1 subject, anatomy. Pretty sure there's other useful subjects. And there's also the benefits not from the actual knowledge gained, but by the ability to learn higher order subjects, since they may have dependencies, you can probably orient learning towards the parts of the body affected. The nurse idea is pretty good. Same with imaging technician. I'd venture a guess that there's a lot of year 1 and year 2 subjects that would be equivalent.

siliconc0w 2y ago

The one silver lining of having such a terrible diagnosis should be that you are immediately unbound from normal FDA requirements and are able and try anything in the pipeline that might work.

rfrey 2y ago
With the caveat that they can only be charged a nominal fee, say the actual production cost of the drug. It would be good to avoid fraudsters stripping desperate people if all their assets
- danielmarkbruce 2y ago
  This is an hilariously straightforward and brilliant idea. It's no holds barred, but the goal has got to be a real, approved drug in the future. Not profits right now.
- cogman10 2y ago
  I'd probably go further and say it must be free of charge. The problem with a nominal fee is fraudsters can be really clever at finding ways to bump up production costs. You might give the company doing the research relaxed liability, but even then you'd want to be careful. After all, you wouldn't want a coal mining operation conducting "research on lung cancer treatment" by sending in miners without PPE. If this is a legitimate research into curing cancer then eating the cost to treat test subjects is the least a company could do. The results are what's can be worth a lot of money.
  - cogman10 2y ago
    Actually, thinking about this further, even free of charge could be problematic. I can 100% see a "cancer research and spiritual healing" clinic popping up that uses the promise is a cure as a way to get someone in the door so they can later be sold on energy healing to increase effectivity of the sugar pill they give away. Fraudsters simply love preying on the desprate.

AtlasBarfed 2y ago

It's my opinion that this shouldn't be a gee whiz story. We've had technology/ science for this for a while, but the medical capitalism establishment doesn't want it. Of course because it values labor too much. They want drugs. Drugs are a monopoly, drugs are MASSIVE profit margins, drugs are simple. And drugs are the means that the FDA knows how to approve treatments. This? It would take armies of skilled labor techs. It would also probably have to be offshore to avoid the US legal system. But in my opinion this is the path to "the cure" for cancer.

hello_computer 2y ago
The problem with immunotherapy--going all the way back to Imhotep--is the same problem with antibiotic resistance: directed evolution. Kill the cancer cells that are susceptible to one treatment (be it chemo, radiation, immune system, or something else), then the cancer cells that are not susceptible survive and continue to multiply. We get a remission, but it comes back later with a vengeance. They know this, so oncology has pivoted to "combination therapy", but many of the official treatments are so toxic that combining them may kill you faster than the cancer. But you are right about the commercial aspect. More money in treatments than in cures. If a cure ever comes, it is more likely to come from "the people" sharing notes over the internet than Pfizer or Novo Nordisk. But with the amount of money involved, it is an open question as to how long such an internet--where people are allowed to freely discuss things--will survive.
deleted 2y ago
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rollulus 2y ago

I believe this is the HN discussion of their publication: https://news.ycombinator.com/item?id=41467503 https://news.ycombinator.com/item?id=41467503

wslh 2y ago

The main point of the Nature article is, frankly, stupid. Imagine if a close friend or family member (brother/sister, child, mother, dather, etc) passed away when a cure was within reach, and your oncologist either lacked the insight or the ethical commitment to tell you. In a conversation like this, I’d want to tag people who’ve lost loved ones to highlight the importance of ‘skin in the game.’ This issue isn’t abstract for those who’ve experienced loss firsthand.

sonotathrowaway 2y ago
It was very odd reading an article where people were debating the ethics of a woman saving her own life, as if it was potentially a shameful act.

inglor_cz 2y ago

In a very similar case, Australian oncologist (specializes in melanoma treatment) Richard Scolyer underwent a modified melanoma treatment for his glioblastoma multiforme. His friends from the same melanoma department treated him. He is still alive and without recurrence more than one year after the original diagnosis, even though his GBM was particularly aggressive. https://www.theguardian.com/books/2024/nov/03/brainstorm-richard-scolyer-book-interview-brain-cancer https://www.theguardian.com/books/2024/nov/03/brainstorm-ric...

TZubiri 2y ago

Absolutely metal and the person I would aspire to be. I can't imagine a higher motivation to study and find a cure than to save yourself, with the possible exception of saving a loved one. As other have mentioned, finding a cure for a specific case is easier and has less regulations than finding a general cure.

stouset 2y ago
A “general cure” for cancer is a pretty tall order. Cancer isn’t one disease, it’s a catch-all term for a bunch of vaguely related ones. Maybe this is a bit of a stretch but it’s a bit like trying to find a way to end deaths from “accidents”. Drowning, falling off a ladder, and a car crash are all a type of accident but it’s really hard to find a thread tying them all together to deal with it generally.
- swayvil 2y ago
  If you could increase the general health of the person. Like, a lot. That might work as a general cure.
  - eptcyka 2y ago
    Preventative measures are not cures. You can’t eat your veggies out of stage 2 cancer.
- zkelvin 2y ago
  Every day, something like 100 cells in your body become cancerous, but your immune system shoots them down before they can cause any harm. This is effectively a general prophylactic for cancer, so it's not unreasonable to think that we could discover a general cure for cancer (and that something immunotherapy is a promising candidate).
  - Amarok 2y ago
    Once the cancer starts to freely mutate it becomes much harder to contain. It's not just cleaning up defective cells, it's full on evultionary warfare between your immune system and the cancer.

abeppu 2y ago

So, if the ethical problem is not attempting self-treatment, but that publishing about self-treatment will lead others to make potentially dangerous choices ... then isn't the publishing process, and its selection bias for positive results really the problematic part? If we never hear about people who attempt self-treatment which then doesn't work, and we occasionally hear about people who were successful, and there's no larger systematic study, then people will get an unrealistic view of the chances of success.

tonetegeatinst 2y ago
I mean this would also imply that researchers have an incentive to publish. The incentive to publish and see results that are "good" and "potential treatments" for a disease mean any funding or research grant is seeing a financial motivation to conduct research, and because good outcomes are seen favorably by investors that creates bias and conflict.

theptip 2y ago

> “I think it ultimately does fall within the line of being ethical, but it isn’t a slam-dunk case” I concede that I haven’t thought as deeply about this as ethicists, but I strongly suspect that the cost/benefit calculation here is way over-cautious if you think the theoretical induced harm is remotely close to the benefits of publishing. The history of science is already full of self-experimenters, so at the margin publishing is unlikely to move the needle. Furthermore, patients with cancer diagnoses are already extremely motivated to try whatever experimental treatments the FDA will permit; self-experimentation is already supply-constrained (of experiment opportunities) and there is excess demand. Again fuzzy concerns about population-level harms overrule individuals’ rights to seek treatments for their fatal diagnoses.

MostlyStable 2y ago
I've been at least partly convinced that "medical ethics" very frequently looks nothing at all like what most people consider to be ethical. As far as I can tell, it exists mostly to prevent anyone from getting in trouble in the case that something goes wrong (which often means "do nothing"), rather than actually consider what is or is not ethical. It seems to be completely infected by the Copenhagen Interpretation of Ethics [0] So, while they aren't always wrong, my default opinion is that, until given compelling evidence to the contrary, I shouldn't worry too much about what medical ethicists think on a particular topic. Even when they are right, they are usually right in a way that most normal people can easily see that it is correct. [0] https://web.archive.org/web/20230302022931/https://blog.jaibot.com/the-copenhagen-interpretation-of-ethics/ https://web.archive.org/web/20230302022931/https://blog.jaib...
- wizzwizz4 2y ago
  It exists because, in the very recent past, a lot of shady stuff has happened just because people were curious. The “Tuskegee Study of Untreated Syphilis in the Negro Male”; Dr. Chester Southam injecting cancer cells into unconsenting patients; Josef Mengele's experiments in Nazi concentration camps… Maybe they overcorrected, but there's good reason!

xyst 2y ago

> but that publishing her results could encourage others to reject conventional treatment and try something similar, says Sherkow. I don’t see the ethical dilemma proposed here. If patient or doctor exhausts through traditional medicine, and have the financial means and expertise to do “self experimentation”. There is nothing wrong with this. As long as the self experimentation is limited to the patient themselves (1), then there’s no ethical issue. edit; although with recent change in political atmosphere in USA, there’s probably some group out there that thinks this is “playing god” or some bs.

devjab 2y ago
The ethical dilemma here is probably based around “individual vs community”, but it’s hard to say when there is no knowledge of how it actually affects the “community” in the long term. The risk is that inspiring people to self-treat might cause more harm than good, but again, nobody really knows. I’d argue that it was more of a liability refusal from the journals, disguised as ethics. It should probably noted that it’s not an outright lie though. Again it’s hard to say considering we don’t have access to the refusals.

xelamonster 2y ago

I think I agree with you in this case, but I'm not so sure about a lot of the examples given in that linked article. BHH Labs: pretty obvious to me it's ethically wrong to find the most desperate people around and pay them less than minimum wage to staff your event... Uber: yes there was a need here, yes the experience offered by traditional taxis is awful and their service is strictly better where available, that really is not related to the ethical concerns I have with them. They're cheaper because they underpay drivers, and quite often they'll come into an area and drive out all the taxis then all but disappear themselves, leaving the town with zero practical transport options.

some_random 2y ago
I actually agree with you on BHH Labs but for a completely different reason. We have minimum wage laws for a reason, and by working for less than that they were undercutting other people's labor. Without that externality I don't really see an issue with it. Underpaying drivers is not part of the Uber discussion here whatsoever, they're specifically talking about raising prices for inclement weather to incentivize more drivers to accommodate more passengers. If they're paid $10 vs $11 an hour or $100 vs $110 an hour is irrelevant for discussing the ethics in this case.
- xelamonster 2y ago
  I'm a bit unclear what you're trying to say re BHH or if that actually is a different reason. Totally fair point on Uber though, I didn't read that one closely enough, but I'll still argue that's unethical for a more relevant reason: surge pricing reinforces inequality by blocking less wealthy people from access to services while those who can afford it are unaffected. The distribution of who is able to use the service under heavy demand is massively skewed towards the class of people that most likely would be just fine without it while the ones most heavily impacted by a missed appointment or being late to work or whatever are the ones left out to dry.
AnthonyMouse 2y ago
> They're cheaper because they underpay drivers I don't really get this one. If you drive for Uber, you're going to have a pretty good idea what you're getting paid, and if you don't like that amount then you're under no obligation to keep doing it. People like to do the math on this using some kind of midsized SUV getting 20ish MPG and that will need major repairs before 150k miles, whereas the people doing it sensibly are using full electric cars or 50 MPG hybrids from reliable makes that will do 500k miles, for which the math is very different. There are also people who do it part time and thereby have very different costs because they're e.g. accepting rides for trips that they themselves would have made alone regardless. These people are not being "underpaid", they're getting nearly free money. And when everybody knows the deal ahead of time -- or can reasonably have figured it out within a week -- how can they be underpaying people (i.e. paying them less than competing employers) and yet people still choose to do it? Unless it's not as bad a deal as it's made out to be for those people. > then all but disappear themselves, leaving the town with zero practical transport options. Do they leave or are they forced out? Because it's an app; it doesn't make a lot of sense for them to leave for no reason.

lollobomb 2y ago

It is so sad that there are so many vultures eager to make a profit out of desperate people with terrible diseases. This is why ethical guidelines and FDA regulations are for, after all. Of course it would be great to judge case-by-case (the scientist in the article is a real hero!). I would like to see a detailed cost-to-benefit study on the topic of allowing unapproved treatments for terminally ill patients.

chriskanan 2y ago
On the flip side, potentially very good treatments that can't be patented or won't yield a good profit margin are not explored because it is very expensive and time consuming to get approval for a drug or treatment.

hinkley 2y ago

Have we ever tried only injecting adjuvants used in vaccines into tumors?

philjohn 2y ago

If you're interested in other cases where people have self experimented and made a breakthrough, Roger Altounyan[1] is another fascinating case - he managed to discover sodium cromoglycate[2] was an effective treatment for Asthma. Arthur Ransome also used him to name one of the characters in his book Swallows and Amazons. [1] https://en.wikipedia.org/wiki/Roger_Altounyan https://en.wikipedia.org/wiki/Roger_Altounyan [2] https://en.wikipedia.org/wiki/Cromoglicic_acid https://en.wikipedia.org/wiki/Cromoglicic_acid

benreesman 2y ago

I can see possible ethical objections, for example if there was a risk that one of these self-ministered viruses was contagious (no idea) that would create scope for harming people. Of if it was a form of embezzlement or something, like there was funding for X and it got used for “treat my own cancer” that would be bad. But TFA seems to say that the ethical problem is “did experiment risky to the patient on myself”, which just seems strictly more ethically clear than “do experiment risky to the patient on other people”, which is a norm, but a regrettable necessity. Did I misread it?

archon810 2y ago
Plus the worst case seems to have been a minor fever.

philipwhiuk 2y ago

> Over a two-month period, a colleague administered a regime of treatments with research-grade material freshly prepared by Halassy, injected directly into her tumour. The real issue is the colleague helping, who is essentially acting as an unlicensed medical professional.

tonetegeatinst 2y ago
Counter argument: when my friend is sick and I reccomend to them a natural remedy....but not some prescription medication.....am I practicing unlicensed medicine? What about performing CPR?
fallingknife 2y ago
Any crime that ends in "without a license" is a crime I care very little about.
- dpig_ 2y ago
  How about "flying a commercial airliner without a license" ?
  - fallingknife 2y ago
    If you didn't actually know how to fly that plane, they would be able to charge you with a lot of crimes that don't end in "without a license."
  - OutOfHere 2y ago
    No one will allow you to fly a commercial airliner without a license (without the law needing to be involved).

Narhem 2y ago

I’ve seen way too many of “scientists” and “researchers” try their own cures to various problems. Always shocks me how relatively simple solutions can be with the proper background but none of those would reach mass market due regulatory issues. Wonder what the policy would be if someone forced experimental medicine on someone without permission. How much do you think the patient should be allowed to sue for?

BudWiser75 2y ago
[dead]

teyc 2y ago

The ethical issue is bunk. With the internet, using a journal as a gatekeeper no longer makes sense. We can, for example, require pre-registration of self trials so that null results can also be noted.

varelse 2y ago

[dead]

9cb14c1ec0 2y ago

Why are we having a discussion of ethical concerns around a scientist's successful experiments in treating cancer. I would note that she had multiple previous rounds of cancer, leading to a generally higher risk of chemo resistance. In choosing a different path, she made a valuable contribution to the health and wellness of all of us, which is unequivocally a good thing.

cwillu 2y ago

This sentence “Halassy joins a long line of scientists who have participated in this under-the-radar, stigmatized and ethically fraught practice.” is why I find it very hard to take the study of ethics seriously.

OutOfHere 2y ago
That's their brand of ethics; it's Ethics with a capital E, whereas real ethics lies in getting the treatment asap to as many people as possible who need it.

datahack 2y ago

Does possessing specialized knowledge or skills alter the ethical landscape of medical decisions? In other words, should someone with the capacity to administer an experimental treatment be held to a different standard than those without such expertise? Let’s say an individual opts for a less effective or accessible treatment due to personal limitations or lack of knowledge: does this alter the ethical weight of their decision? This question becomes more complex when treatments have varying degrees of risk and benefit. If a treatment is simply an off-label, it often goes totally unnoticed unless it carries an unacceptable risk. Under that condition, what happens when the treatment holds significant promise, potentially offering a curative outcome? But it doesn’t yet have medical trials? Does the prospect of a cure override the ethical concerns about its risks? Where is that line? When faced with a life-threatening disease like recurring cancer, what is the individual’s responsibility to society in considering the ethics of self-treatment? Should she have accepted less effective therapy that had already lead to a failure condition for the good of the rest of us even though we are barely effected? How do the potential benefits to the individual—such as survival—contrast with the potential societal harm, if any, in terms of bypassing established protocols or ignoring sanctioned research? At what point does the line blur between personal medical autonomy and the ethical implications of self-administered treatments? I really do wonder about these questions. I mean, the only difference between the ‘ivermectin cures cancer’ et al crowd and this lady is her degree of knowledge, so how do we deal with this ethically?

flappyeagle 2y ago
Let her do what she wants to herself. So many words spent waffling on something so simple
valval 2y ago
Am I tired or dumb? I know all the words but I have no idea what you’re saying. I can’t pick any two consecutive rows of text in your message that I understand.

hollerith 2y ago

Although I have no objection to a "right to try", it is probably not worth spending a lot of time discussing it because of how rare it is that there are no good safe responses to a desperate medical situation, but there is a dangerous one with a decent chance of success. The two chronically-ill friends I knew who put their chips on a drastic cure ended up dying pretty quickly from the cure. Neither even had a terminal illness, at least not one that would kill them any year soon: they just wanted to stop feeling miserable and to regain the ability to get stuff done.

viraptor 2y ago
Were they aware of the risk? As in, was it a conscious decision of "I'd rather take death over miserable rest of my life"?
0xDEAFBEAD 2y ago
Can you tell us what the 'cures' were, to warn others?

gregwebs 2y ago

Immunotherapy seems to be where the big advances in cancer treatment lie. Coleys toxins were bacteria injections given to cancer patients over a hundred years ago that cured some of them. https://pmc.ncbi.nlm.nih.gov/articles/PMC1888599/ https://pmc.ncbi.nlm.nih.gov/articles/PMC1888599/

ChrisMarshallNY 2y ago

Wasn’t that how the whole Jeckyll/Hyde thing happened? In all seriousness, I’m glad it worked out for her. I have had a number of friends deal with breast cancer (in fact, one just told me she has been diagnosed with it, a couple of days ago). It sucks, but, fortunately, is a lot less deadly than it used to be.

FerretFred 2y ago

What a great achievement ! "discussion about the ethics of self-experimentation" Is this another variation of the assisted dying argument ? I,e. "It's my body". Personally (and Iemohasise that word), I feel that if it's the best option, you should go for it.

the5avage 2y ago

I once had a professor who worked on magnetic fluids. They can (potentially) be used to transport the medication of chemo therapy directly to the tumor, without destroying the rest of the body. Problem is it is basically impossible for research (without the money of big pharma) to ever try this - even though he works at a very big and respected University. It is not even possible to try this with people who will literally die to cancer anyway and who would want to try the treatment.

Horffupolde 2y ago

Antibiotic sulfamides were also tested and first proven to work this way where the chemist Domagk tried it on his own daughter who would have otherwise died.

HeavyStorm 2y ago

Anyone else can't click the X for the subscription ad on mobile? God I hate these dark patterns - I would refuse to implement it. Just don't show the freaking X!

dsign 2y ago

This is all well and good. What I don't understand is why there isn't a semi-regular regulation-evading "course of action" for people that can afford it. Say, billionaires. They could build an island in the Pacific and get whatever personalized and experimental treatment will cure their specific disease, at the cost of their fortunes. The rest of us could cheer from afar, learn from the experiments, and have our tax money used for scaling out.

mathgradthrow 2y ago

Self experimentation is not ethically fraught. Informed consent is possibly only achieved in this instance.

JOANEDWIN 2y ago

[flagged]

adamredwoods 2y ago

So the article states that the virus was injected directly into the tumor for two-months. And then she was treated with surgery and a HER2 blocker. So this will not work for metastatic cancer at all. >> Analysis of the tumour after removal showed that it was thoroughly infiltrated with immune cells called lymphocytes, suggesting that the OVT had worked as expected and provoked Halassy’s immune system to attack both the viruses and the tumour cells. “An immune response was, for sure, elicited,” says Halassy. After the surgery, she received a year’s treatment with the anticancer drug trastuzumab.

djmips 2y ago

They mention that they wouldn't want people to try unproven treatments but with the success rate you see in cancer treatments, it's easy to get the idea that they are all unproven.