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.
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.
> “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.
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.
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.
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.
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.
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.
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.
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.
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?
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.
> 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.
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.
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.
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.
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.
"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.
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?
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.
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.
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.
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.
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.
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.
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.
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?
> 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.
>> 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.
Scientist treated her own cancer with viruses she grew in the lab
(nature.com)683 points by dataminer 9 November 2024 | 247 comments
Comments
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.
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?
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.
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.
>> 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.
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-ric...
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.
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?
God I hate these dark patterns - I would refuse to implement it. Just don't show the freaking X!
https://pmc.ncbi.nlm.nih.gov/articles/PMC1888599/
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.
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 [2] https://en.wikipedia.org/wiki/Cromoglicic_acid
"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.
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.
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.
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.
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.
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.
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?
The real issue is the colleague helping, who is essentially acting as an unlicensed medical professional.
Sad state of science that real results cannot be published because it goes against the current dogma.