A researcher in virology and immunotherapy got bad news: Her cancer was back with a vengeance; the treatments weren’t working. She decided to treat it herself.
Very interesting case. I've got a friend who was saved by an experimental trial of immunotherapy a few years back, so I was aware we could weaponize the immune system against cancer, but I didn't know we could straight up use live viruses !
A remark on this point :
"Allow consent forms to skip trivial issues no one cares about (“aspirin might taste bad”) and optimize them for patient understanding instead of liability avoidance."
I think it's like that because it kinda makes sense in the US. Microwaves manuals have warnings about not putting your cat in the microwave, which is not the case in Europe, because a judge would always consider that a customer should not be a complete moron.
I think this would be possible if people couldn't sue companies for completely wild reasons.
Last thing : I have the feeling new forms of treatment are generally considered a last resort after all traditional options fail. It makes sense in the beginning of course, but I feel like when we have enough data to back it up, we fail to change the standard of treatment quickly enough.
For example, considering the body of research on the effects of psilocybin on depression (more efficient and less side effects compared to SSRIs), we should have already started research on psilocybin as a first intention treatment, and not only for SSRIs-resistant forms of depression. It doesn't make any sense.
Challenging question. There is a long history of self-experimentation and one has to admire the courage it takes for an innovative investigator to take the plunge. I am truly glad that Dr. Beatta was successful in treating her recurring tumor. But as a research biologist who has reviewed many research protocols, papers, and grant proposals, I understand the reservations of the journals to publish the paper she and her team submitted. IRBs were instituted to consider the ethics of proposed research, as well as the experimental design. The history of medicine is full of unethical experimentation on subjects without their informed consent - think of Helen Lane and the Tuskegee airmen. So don't discount the value of IRBs entirely. Since Dr. Beatta experimented on herself, there isn't a question of informed consent. But non-virologist patients pressuring their oncologists to inject their tumors with live viruses after reading about her experience wouldn't be doing so out of informed consent, but desperation. Another important consideration is that to truly advance the field of cancer treatment, more than a seemingly arbitrary choice of viruses, doses, injection protocol, and treatment timeline is necessary. From Dr. Beatta's anecdotal study we don't know whether there is anything special about the virus types used, how often and what titer is injected, how long to continue the injections, etc. Every tumor and patient has a unique genetic profile and there is no way to know from this study of one whether similar treatment would be effective or harmful. It's frustrating that careful research requires adequate sample sizes and can't be rushed, particularly for critically ill patients, but in the long run many more lives are likely to be saved from such research than from self-experimentation on a single subject. Yet another concern with this study is that inflammation is an unpredictable process that can be difficult to regulate. You've likely heard of cytokine storms in which a patient's immune system reacts to infection with an uncontrolled and excessive release of immune molecules that can be fatal. Dr. Beatta experienced fever for several days, a sign of inflammation. Fortunately her body tolerated it and recovered, but it could have gone the other way. Please understand that I am not discounting her skill and courage in conducting this experiment on herself, and it is an extremely interesting pathway for future treatment. Having lost several family members to cancer, I wish I could have convinced their doctors to take such a dramatic step to try to save them after standard treatments failed. But the biologist in me understands that research must proceed in a deliberate and ethical manner to have the greatest benefit.
I don't think it will be very easy for people to find anyone capable of injecting them with viruses. To me the greater concern is something more like with what we saw built around controversial therapies for Covid. It is not hard for me to imagine cancer patients seeking exposure to people who are ill in the hopes of getting viruses. Probably not a good idea, certainly not a controlled environment, and an even worse idea if the patient is severely immunocompromised due to chemotherapies.
Good point! This would be a very bad idea. Cancer patients typically are immuno-compromised from the disease and treatment, and deliberately trying to be infected in this way could have disastrous consequences. Oncologists usually urge their patients to mask and avoid exposure to viruses, sound advice.
What a great article! Thank you! If you study the history of science, you know that scientific experimentation on yourself was Whole part of the advancement… Somehow the regulations have taken over innovation…
Very informative and thought provoking article, but what is the freedom that cars brought over bicycles? (speed?, longer mobility reach within short time? Moving in an enclosed box, disconnected from outdoor life? Contributing to climate change?)
I used to have a car. I have car owners all around me. I rent a car few times per year. The preference (or is it convenience, the option by default) is there, but more often than not it is not a choice anymore, the whole society and cities/towns have been built around cars and roads...
Every time somebody uses a car instead of a bicycle, that decision is heavily influenced by the car-centric infrastructure development of the latter half of the 20th century, which in turn is heavily influenced by the car manufacturers’ lobby. Motonormativity is not The Way Forward, rather a cul-de-sac
The title here might be a bit misleading. The question is not "should you be able to experiment on yourself" but rather "should journals publish one-off results from brilliant individuals?" The only ethical question is for the editor, not Dr. Beaty. To a journal editor this has the status of an interesting anecdote.
The OED defines "experiment" as "a scientific procedure undertaken to make a discovery, test a hypothesis, or demonstrate a known fact". This uncontrolled n-of-one report is really interesting, but the fact that it was done by a scientist who kept really good notes does not make it "scientific" or an "experiment". It does not "test a hypothesis", because it is statistically meaningless. Does it "make a discovery"? Far too early to tell, but if "the plural of anecdote is not data" then surely the singular of anecdote isn't either. Discovery and hypothesis testing await the accumulation of enough anecdotes to get someone to fund the collection of data.
The ethical question about what she's done strikes me as irrelevant. Is it (un)ethical for her to stick needles full of virus into her tumor? Sounds dangerous, might be stupid (or brilliant), but the ethical question is for the editors, not the professor.
It's hard to imagine a reasonable IRB complaint about her (1) doing something to herself and (2) telling everyone about it. The fact that IRBs make some bad decisions is irrefutable, but they are at worst a necessary evil - and at best protect countless people from really dumb stuff done under the banner of "science" and send scientists back to the drawing board to do better research.
So the question then is, what to do with the results of this escapade? If nothing else it should be published as a case report, perhaps adding to others, and thus stimulating "research". I wish her - and the rest of us - the best of luck.
In tech, we differentiate between generative research and evaluative research. Generative helps you create hypotheses, while evaluative helps you determine which ones are true.
This is not an RCT, so it’s clearly not evaluative research. But it’s definitely generative research.
As a world-class expert, Beata had a valid hypothesis, but with a reasonably low prior that it would work. With this, her prior is strengthened enough to suggest moving to the evaluative stage and do an RCT.
I agree with the existence of IRBs. I’m just saying their scope and power is too big.
Bring up the web page in a browser for the story, the tutorial, the bibliography (either URLs or downloadable PDFs). Human mothers' milk contains immune enhancing constituents, and my wife's idea was to enhance my immune system to fight my small amount of non-aggressive cancer. But around the time of my diagnosis we found research from Lund University in Sweden that showed mother's milk itself killed cancer cells in vitro but left normal cells unaffected. Through other coincidences, we connected with the wife of a former colleague, a cancer survivor who was nursing a 6 month old, who agreed to pump milk for me. Within a month, my PSA (imperfect blood marker of prostate cancer) fell into the middle of the normal range. And has pretty much stayed there since (there are some nuances with BPH and a growing gland as I age, as well as some spikes when I had bacterial prostatitis).
I have been drinking mother's milk since September 1999, from occasional donors and purchased from a milk bank, tracking with PSA blood work as well as MRIs with spectroscopy at UCSF since then. And my cancer has been undetectable for many years. I would be happy to communicate via email or phone. See my web paper for contact info.
And Tomas, thanks so much for your scholarship, your graphics, and your fascinating & eclectic topics.
Not my area of expertise, but a close friend of mine, Andrew Hessel, has been exploring synthetic biology for this exact use case. Instead of guessing how a virus and a cancer cell may interact, the idea is manufacturing personalized and targeted synthetic viruses that hunt and neutralize the cancer cells in your body. It could be an interesting followup article for you, and happy to connect you with Andrew. Here's a team he co-founded: https://www.humanegenomics.com/. Here's a video of him sharing related insights: https://www.youtube.com/watch?v=GQrOTg0OGVo
I did something similar 25 years ago with my prostate cancer, using human mothers' milk, and have been cancer free since. See https://www.cohensw.com/mvpcsg_nov99_text.html for my story and peer reviewed scientific references.
Tomas, there's an almost overwhelming number of errors of thinking in this article that make it difficult to assess the value of your arguments. I'll mention a few.
1. At the grand level, an important part of research is how to combat researcher bias. In most cases, the tool for achieving this is the double blind study. The term "double blind" refers to the fact that, ideally, neither the study administrators nor the study participant knows whether they have received the studied intervention. This is not always possible, sometimes because a study participant has a strong reaction to the unknown substance they've received, or in other cases because it's impossible to construct a study that way (imagine a new hip replacement material: you can't exactly perform surgeries on people and just pretend to replace their hips. Or it might be difficult or impossible to prevent the surgeons from simply observing the material of the hip replacement). In this case, however, everyone knew what was being injected: the recipient and those giving her the treatments. Effectively, this wasn't really research, it was at best an interesting observation.
2. You told us at the beginning of Beata's story that she had triple neg cancer, and that the cancer kept recurring, on average every 2 years, because no substance was available to treat it due to the lack of hormone receptors. Then you emphasize how amazing it is that she has not had a recurrence in 4 years but nearly bury the fact that actually, she did not have triple neg cancer and that she started taking a medicine that was targeted to her cancer (which she had not taken for her two prior tumors). This is HUGE! We are being asked to believe that the viruses she took played a role in her lack of recurrence when it seems extremely likely that the other new medicine was the key component.
3. The car accident analogy is atrocious. Car companies would examine accidents and learn how to make cars safer? Come on, this is laughable. The reason accidents are studied and cars have become so much safer is exactly the same government regulation you are attacking in this article. I know that you repeatedly state here that you believe government regulation has a role to play and you just want it to be more intelligently applied, but its hard to fully believe that when you make this type of argument.
4. Your example of the hygiene study where you claim a several months delay "probably killed thousands of people who would have been saved" is utterly absurd with a number that, frankly, you've completely pulled out of your... place that numbers should not be pulled out of.
5. I am far from an expert on this but I don't think it is the "job" of peer reviewers to be able to know if data is being fudged. I highly doubt they have the resources to do that. It's an enormous problem, and one I suspect that can only be solved by funding (and publishing) far more replication studies.
6. Your list of Nobel prizes in which the researcher experimented on themselves is interesting, but of the 6 cases you cite, how many involved risk to said researcher? 4 obviously not. The vaccine study could certainly have involved risk; I'd have to know more about the state of the art in vaccinations at the time, and whether the vaccine had gone through previous trials to test safety before the researcher injected themself. The cauterization study certainly sounds like it was risky, but again I'd have to know more to be certain.
This IS an interesting story. There are a LOT of things wrong with the scientific journal publishing industry. There are LOTS of things wrong with IRBs and our ability to try innovative things. But it feels like you've largely built a straw-man argument here. When you use poor arguments it detracts from your overall point.
1. I understand the point of RCTs. I have personally carried out hundreds of them in tech (where we call them AB-tests) and understand their value vs other approaches.
RCTs are part of evaluative research: When you have a very strong hypothesis that you want to validate.
What Beata did is not that. It's generative research: When you are creating hypothesis. It comes before RCTs.
This article is not saying oncolytic virology works, but rather that it might work better than we thought. This should now lead to evaluative research.
2. Fair point, I should have highlighted that more clearly. Thanks! It does go to the previous point though: I'm not saying this definitely works, but rather that it can work
3. You criticize this point but I have a hard time following your logic. What exactly is the problem with the car? No, it's not only regulation that pushed car companies to increase safety. Remember how much car companies used to advertise things like seat belts and anti-drift technologies? Safety is among the top concerns for car buyers, and companies have been working on it for ages without being compelled to do so in every instance.
4. The link to the article going into the details is there. It's from Scott Alexander, and I think it's really good. Go read it if you disagree and care!
This interestingly touches on, what I think, is a flaw in journals; publishing a paper is not (should not be) an endorsement. Its merely a place for good research to viewed. Really interesting and amazing results!
While I approve of addictive drugs being illegal to possess- any legal substance a doctor or scientist (or any other adult, for that matter) chooses to experiment with on their own body is none of anyone’s business.
Publishing the results of their experiments should be protected by freedom of speech laws; but of course does not prevent lawsuits for harm caused by bad advice. Government should only be involved when they seek to involve others; or to profit from their experiments.
You've provided a refreshing angle on n=1 medical research. I'm sure there are many cases - that of Prof Richard Scolyer has some similarities. He's an expert in melanoma immunotherapy who is applying his (& his team's) expertise in melanoma, to treat his own inoperable glioblastoma. https://www.google.com/amp/s/amp.abc.net.au/article/104252882
I’ve heard of some of the targeted cancer treatments that are coming on board. Very interesting.
But not the virus aspect of stimulating the immune system. Glad there were documented studies prior to Covid since everything related to Covid still seems to have the “not true” label attached - regardless of which side people to seem to sit. Frustrating.
But very interesting case studies being reported in the article. Thanks for providing the links, Tomas.
You forgot 2005 Nobel Prize winner Barry Marshall who proved Helicobacter pylori was the major cause of ulcers by drinking a flask of the culture.
Thanks for sharing! Yes indeed
Amazing article Tomas. The detail you put into ALL your pieces is tremendously educational.
Many thanks.
Thanks Alan! I put 2 babies out a week :)
Very interesting case. I've got a friend who was saved by an experimental trial of immunotherapy a few years back, so I was aware we could weaponize the immune system against cancer, but I didn't know we could straight up use live viruses !
A remark on this point :
"Allow consent forms to skip trivial issues no one cares about (“aspirin might taste bad”) and optimize them for patient understanding instead of liability avoidance."
I think it's like that because it kinda makes sense in the US. Microwaves manuals have warnings about not putting your cat in the microwave, which is not the case in Europe, because a judge would always consider that a customer should not be a complete moron.
I think this would be possible if people couldn't sue companies for completely wild reasons.
Last thing : I have the feeling new forms of treatment are generally considered a last resort after all traditional options fail. It makes sense in the beginning of course, but I feel like when we have enough data to back it up, we fail to change the standard of treatment quickly enough.
For example, considering the body of research on the effects of psilocybin on depression (more efficient and less side effects compared to SSRIs), we should have already started research on psilocybin as a first intention treatment, and not only for SSRIs-resistant forms of depression. It doesn't make any sense.
Hi Laurent, both of the things you say make sense, although I don't know enough about IRBs and their equivalent in Europe
I didn't know but psilocybin! Another reason to try it
Challenging question. There is a long history of self-experimentation and one has to admire the courage it takes for an innovative investigator to take the plunge. I am truly glad that Dr. Beatta was successful in treating her recurring tumor. But as a research biologist who has reviewed many research protocols, papers, and grant proposals, I understand the reservations of the journals to publish the paper she and her team submitted. IRBs were instituted to consider the ethics of proposed research, as well as the experimental design. The history of medicine is full of unethical experimentation on subjects without their informed consent - think of Helen Lane and the Tuskegee airmen. So don't discount the value of IRBs entirely. Since Dr. Beatta experimented on herself, there isn't a question of informed consent. But non-virologist patients pressuring their oncologists to inject their tumors with live viruses after reading about her experience wouldn't be doing so out of informed consent, but desperation. Another important consideration is that to truly advance the field of cancer treatment, more than a seemingly arbitrary choice of viruses, doses, injection protocol, and treatment timeline is necessary. From Dr. Beatta's anecdotal study we don't know whether there is anything special about the virus types used, how often and what titer is injected, how long to continue the injections, etc. Every tumor and patient has a unique genetic profile and there is no way to know from this study of one whether similar treatment would be effective or harmful. It's frustrating that careful research requires adequate sample sizes and can't be rushed, particularly for critically ill patients, but in the long run many more lives are likely to be saved from such research than from self-experimentation on a single subject. Yet another concern with this study is that inflammation is an unpredictable process that can be difficult to regulate. You've likely heard of cytokine storms in which a patient's immune system reacts to infection with an uncontrolled and excessive release of immune molecules that can be fatal. Dr. Beatta experienced fever for several days, a sign of inflammation. Fortunately her body tolerated it and recovered, but it could have gone the other way. Please understand that I am not discounting her skill and courage in conducting this experiment on herself, and it is an extremely interesting pathway for future treatment. Having lost several family members to cancer, I wish I could have convinced their doctors to take such a dramatic step to try to save them after standard treatments failed. But the biologist in me understands that research must proceed in a deliberate and ethical manner to have the greatest benefit.
Hi, thanks!
I don't think we disagree in anything from what you say!
And some of your questions are answered in next week's article. Looking forward to your thoughts then!
I look forward to reading it.
I don't think it will be very easy for people to find anyone capable of injecting them with viruses. To me the greater concern is something more like with what we saw built around controversial therapies for Covid. It is not hard for me to imagine cancer patients seeking exposure to people who are ill in the hopes of getting viruses. Probably not a good idea, certainly not a controlled environment, and an even worse idea if the patient is severely immunocompromised due to chemotherapies.
I very highly doubt many people will do that!
And these people would do other dumb stuff too
I wouldn't slow down progress just to account for them!
Good point! This would be a very bad idea. Cancer patients typically are immuno-compromised from the disease and treatment, and deliberately trying to be infected in this way could have disastrous consequences. Oncologists usually urge their patients to mask and avoid exposure to viruses, sound advice.
What a great article! Thank you! If you study the history of science, you know that scientific experimentation on yourself was Whole part of the advancement… Somehow the regulations have taken over innovation…
I’m a breast cancer survivor. There is so much research right now it’s impossible to keep up, but this is very exciting!!
One of the bright sides of humanity!
Very informative and thought provoking article, but what is the freedom that cars brought over bicycles? (speed?, longer mobility reach within short time? Moving in an enclosed box, disconnected from outdoor life? Contributing to climate change?)
Do you own a car? Do you know car owners? Do you use cars? Every time somebody uses a car instead of a bicycle, they are manifesting a preference.
I used to have a car. I have car owners all around me. I rent a car few times per year. The preference (or is it convenience, the option by default) is there, but more often than not it is not a choice anymore, the whole society and cities/towns have been built around cars and roads...
Every time somebody uses a car instead of a bicycle, that decision is heavily influenced by the car-centric infrastructure development of the latter half of the 20th century, which in turn is heavily influenced by the car manufacturers’ lobby. Motonormativity is not The Way Forward, rather a cul-de-sac
The title here might be a bit misleading. The question is not "should you be able to experiment on yourself" but rather "should journals publish one-off results from brilliant individuals?" The only ethical question is for the editor, not Dr. Beaty. To a journal editor this has the status of an interesting anecdote.
The OED defines "experiment" as "a scientific procedure undertaken to make a discovery, test a hypothesis, or demonstrate a known fact". This uncontrolled n-of-one report is really interesting, but the fact that it was done by a scientist who kept really good notes does not make it "scientific" or an "experiment". It does not "test a hypothesis", because it is statistically meaningless. Does it "make a discovery"? Far too early to tell, but if "the plural of anecdote is not data" then surely the singular of anecdote isn't either. Discovery and hypothesis testing await the accumulation of enough anecdotes to get someone to fund the collection of data.
The ethical question about what she's done strikes me as irrelevant. Is it (un)ethical for her to stick needles full of virus into her tumor? Sounds dangerous, might be stupid (or brilliant), but the ethical question is for the editors, not the professor.
It's hard to imagine a reasonable IRB complaint about her (1) doing something to herself and (2) telling everyone about it. The fact that IRBs make some bad decisions is irrefutable, but they are at worst a necessary evil - and at best protect countless people from really dumb stuff done under the banner of "science" and send scientists back to the drawing board to do better research.
So the question then is, what to do with the results of this escapade? If nothing else it should be published as a case report, perhaps adding to others, and thus stimulating "research". I wish her - and the rest of us - the best of luck.
I think this is too binary.
In tech, we differentiate between generative research and evaluative research. Generative helps you create hypotheses, while evaluative helps you determine which ones are true.
This is not an RCT, so it’s clearly not evaluative research. But it’s definitely generative research.
As a world-class expert, Beata had a valid hypothesis, but with a reasonably low prior that it would work. With this, her prior is strengthened enough to suggest moving to the evaluative stage and do an RCT.
I agree with the existence of IRBs. I’m just saying their scope and power is too big.
Bring up the web page in a browser for the story, the tutorial, the bibliography (either URLs or downloadable PDFs). Human mothers' milk contains immune enhancing constituents, and my wife's idea was to enhance my immune system to fight my small amount of non-aggressive cancer. But around the time of my diagnosis we found research from Lund University in Sweden that showed mother's milk itself killed cancer cells in vitro but left normal cells unaffected. Through other coincidences, we connected with the wife of a former colleague, a cancer survivor who was nursing a 6 month old, who agreed to pump milk for me. Within a month, my PSA (imperfect blood marker of prostate cancer) fell into the middle of the normal range. And has pretty much stayed there since (there are some nuances with BPH and a growing gland as I age, as well as some spikes when I had bacterial prostatitis).
I have been drinking mother's milk since September 1999, from occasional donors and purchased from a milk bank, tracking with PSA blood work as well as MRIs with spectroscopy at UCSF since then. And my cancer has been undetectable for many years. I would be happy to communicate via email or phone. See my web paper for contact info.
And Tomas, thanks so much for your scholarship, your graphics, and your fascinating & eclectic topics.
Interesting!
Not my area of expertise, but a close friend of mine, Andrew Hessel, has been exploring synthetic biology for this exact use case. Instead of guessing how a virus and a cancer cell may interact, the idea is manufacturing personalized and targeted synthetic viruses that hunt and neutralize the cancer cells in your body. It could be an interesting followup article for you, and happy to connect you with Andrew. Here's a team he co-founded: https://www.humanegenomics.com/. Here's a video of him sharing related insights: https://www.youtube.com/watch?v=GQrOTg0OGVo
Very cool! Thanks for bringing to my attention!
I did something similar 25 years ago with my prostate cancer, using human mothers' milk, and have been cancer free since. See https://www.cohensw.com/mvpcsg_nov99_text.html for my story and peer reviewed scientific references.
Hi Howard! It's a bit too long (it goes beyond the token window from Claude!) Can you summarize?
Tomas, there's an almost overwhelming number of errors of thinking in this article that make it difficult to assess the value of your arguments. I'll mention a few.
1. At the grand level, an important part of research is how to combat researcher bias. In most cases, the tool for achieving this is the double blind study. The term "double blind" refers to the fact that, ideally, neither the study administrators nor the study participant knows whether they have received the studied intervention. This is not always possible, sometimes because a study participant has a strong reaction to the unknown substance they've received, or in other cases because it's impossible to construct a study that way (imagine a new hip replacement material: you can't exactly perform surgeries on people and just pretend to replace their hips. Or it might be difficult or impossible to prevent the surgeons from simply observing the material of the hip replacement). In this case, however, everyone knew what was being injected: the recipient and those giving her the treatments. Effectively, this wasn't really research, it was at best an interesting observation.
2. You told us at the beginning of Beata's story that she had triple neg cancer, and that the cancer kept recurring, on average every 2 years, because no substance was available to treat it due to the lack of hormone receptors. Then you emphasize how amazing it is that she has not had a recurrence in 4 years but nearly bury the fact that actually, she did not have triple neg cancer and that she started taking a medicine that was targeted to her cancer (which she had not taken for her two prior tumors). This is HUGE! We are being asked to believe that the viruses she took played a role in her lack of recurrence when it seems extremely likely that the other new medicine was the key component.
3. The car accident analogy is atrocious. Car companies would examine accidents and learn how to make cars safer? Come on, this is laughable. The reason accidents are studied and cars have become so much safer is exactly the same government regulation you are attacking in this article. I know that you repeatedly state here that you believe government regulation has a role to play and you just want it to be more intelligently applied, but its hard to fully believe that when you make this type of argument.
4. Your example of the hygiene study where you claim a several months delay "probably killed thousands of people who would have been saved" is utterly absurd with a number that, frankly, you've completely pulled out of your... place that numbers should not be pulled out of.
5. I am far from an expert on this but I don't think it is the "job" of peer reviewers to be able to know if data is being fudged. I highly doubt they have the resources to do that. It's an enormous problem, and one I suspect that can only be solved by funding (and publishing) far more replication studies.
6. Your list of Nobel prizes in which the researcher experimented on themselves is interesting, but of the 6 cases you cite, how many involved risk to said researcher? 4 obviously not. The vaccine study could certainly have involved risk; I'd have to know more about the state of the art in vaccinations at the time, and whether the vaccine had gone through previous trials to test safety before the researcher injected themself. The cauterization study certainly sounds like it was risky, but again I'd have to know more to be certain.
This IS an interesting story. There are a LOT of things wrong with the scientific journal publishing industry. There are LOTS of things wrong with IRBs and our ability to try innovative things. But it feels like you've largely built a straw-man argument here. When you use poor arguments it detracts from your overall point.
Thank you for your thoughtful reply! Reactions:
1. I understand the point of RCTs. I have personally carried out hundreds of them in tech (where we call them AB-tests) and understand their value vs other approaches.
RCTs are part of evaluative research: When you have a very strong hypothesis that you want to validate.
What Beata did is not that. It's generative research: When you are creating hypothesis. It comes before RCTs.
This article is not saying oncolytic virology works, but rather that it might work better than we thought. This should now lead to evaluative research.
2. Fair point, I should have highlighted that more clearly. Thanks! It does go to the previous point though: I'm not saying this definitely works, but rather that it can work
3. You criticize this point but I have a hard time following your logic. What exactly is the problem with the car? No, it's not only regulation that pushed car companies to increase safety. Remember how much car companies used to advertise things like seat belts and anti-drift technologies? Safety is among the top concerns for car buyers, and companies have been working on it for ages without being compelled to do so in every instance.
4. The link to the article going into the details is there. It's from Scott Alexander, and I think it's really good. Go read it if you disagree and care!
This interestingly touches on, what I think, is a flaw in journals; publishing a paper is not (should not be) an endorsement. Its merely a place for good research to viewed. Really interesting and amazing results!
While I approve of addictive drugs being illegal to possess- any legal substance a doctor or scientist (or any other adult, for that matter) chooses to experiment with on their own body is none of anyone’s business.
Publishing the results of their experiments should be protected by freedom of speech laws; but of course does not prevent lawsuits for harm caused by bad advice. Government should only be involved when they seek to involve others; or to profit from their experiments.
I agree, except for the freedom of speech. That’s freedom against government intervention. Journals should be free to publish what they want.
You've provided a refreshing angle on n=1 medical research. I'm sure there are many cases - that of Prof Richard Scolyer has some similarities. He's an expert in melanoma immunotherapy who is applying his (& his team's) expertise in melanoma, to treat his own inoperable glioblastoma. https://www.google.com/amp/s/amp.abc.net.au/article/104252882
Super interesting. Thanks for sharing!
Great article. Look forward to part 2!
I’ve heard of some of the targeted cancer treatments that are coming on board. Very interesting.
But not the virus aspect of stimulating the immune system. Glad there were documented studies prior to Covid since everything related to Covid still seems to have the “not true” label attached - regardless of which side people to seem to sit. Frustrating.
But very interesting case studies being reported in the article. Thanks for providing the links, Tomas.