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.
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).
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.
According to Thomas Seyfried, cancer is indeed one disease, fundamentally a metabolic disease [0]. Seyfried's theory suggests that cancer stems from mitochondrial dysfunction, which disrupts cellular metabolism and leads to abnormal cell growth. He argues that the root cause of cancer is not genetic mutations, as commonly believed, but rather metabolic disturbances that alter how cells process energy. Basically returning the damaged cells to "old pathways" of energy generation, without oxygen: fermentation.
This process, known as the Warburg Effect (named after Otto Warburg who first described it in the 1920s), shows that cancer cells primarily rely on fermentation for energy production even in the presence of oxygen - a phenomenon called "aerobic glycolysis." However, glucose fermentation is only part of the story. Cancer cells also heavily depend on glutamine, an amino acid that serves as another crucial fuel source. Through a process called glutaminolysis, cancer cells convert glutamine into both energy and building blocks for rapid cell division. This dual dependency on glucose and glutamine makes cancer cells metabolically distinct from normal cells.
This metabolic theory challenges the traditional somatic mutation theory, which views cancer as a result of DNA mutations accumulating in cells. Seyfried proposes that targeting the metabolism of cancer cells—primarily through dietary interventions like ketogenic diets or therapies that restrict glucose—could effectively "starve" cancer cells while leaving healthy cells less affected. His approach implies that a general strategy for treating cancer could involve targeting this metabolic vulnerability shared across many cancer types.
Furthermore, this theory suggests that combination approaches targeting both glucose and glutamine metabolism might be particularly effective, as they would address both major fuel sources that cancer cells rely on. This could include strategies such as ketogenic diets (to restrict glucose), glutamine inhibitors, and other metabolic therapies that work together to compromise cancer cell energy production while preserving normal cell function.
One heuristic I like is a kind of reverse Occam's Razor: When no clear solution doesn't emerge even after a huge amount of searching, it's probably because the problem actually is complex, not because it's simple.
For example, maybe cancer does have a single unifying cause that can be fixed very easily. But the millions of hours put into studying it suggests otherwise.
This seems to be generally true about most things. Only very rarely do we get something super simple like goiter being caused by the lack of iodine, or stomach ulcers being caused by H. pylori.
Interesting point, though I think we should also consider that our ability to understand diseases like cancer has historically been limited by the observational and analytical technology available. For example, it was recently suggested that Alzheimer’s might be linked to Candida albicans, a fungus that naturally inhabits our bodies but could play a role in the disease. Just as it took time to discover that iodine deficiency causes goiter or that H. pylori produces ulcers, the complexity of cancer might partly stem from the fact that we don’t yet have the necessary technology to closely observe the cells and underlying mechanisms. It’s not necessarily the inherent complexity of the problem but our technological limitations that delay understanding—and possibly a cure.
The Candida link is interesting but not proven — so in that sense it's equivalent to your cancer guy.
The other discoveries predate a lot of advanced medical technology, though. They were the low-hanging fruit in that sense. The only semi-recent discovery I can think of is that the Epstein-Barr virus causes cancer, though that does not necessarily qualify as "simple". EBV is also implicated in MS. EBV could ultimately be one of those "unifiers" that could explain multiple diseases.
> Seyfried, in my readings, appears all too often to speak of “cancer” as if it were a monolithic single disease. As I’ve pointed out many times before, it’s not. Indeed, only approximately 60-90% of cancers demonstrate the Warburg effect.
> Dr. Seyfried presents mouse studies that are interesting and suggestive that there might be something to this whole ketogenic diet thing, at least in brain tumors, such as this one. However, this is what we in the oncology biz would call pretty preliminary data, worthy of further investigation but not supporting the grandiose claims that Dr. Seyfried makes.
> Irritatingly, during the same talk, Dr. Seyfried refers to having done a “biopsy” on the GBM when the case report clearly says that the patient underwent a partial excision of the temporal pole with incomplete debulking of the tumor, which is a different thing.
> ...
> He also heaps scorn on the hospital for insisting that the patient undergo standard of care therapy, clearly demonstrating that he has no understanding of clinical trial ethics.
> This brings me back to the question of whether cancer is a metabolic disease or a genetic disease, the answer to which I promised early on. The likely answer? It’s both! Indeed, a “chicken or the egg” argument continues about whether it is the metabolic abnormalities that cause the mutations observed in cancer cells or whether it is the mutations that produce the metabolic abnormalities. Most likely, it’s a little of both, the exact proportion of which depending upon the tumor cell, that combine in an unholy synergistic circle to drive cancer cells to be more and more abnormal and aggressive. Moreover, cancer is about far more than just the genomics or the metabolism of cancer cells. It’s also the immune system and the tumor microenvironment (the cells and connective tissue in which tumors arise and grow). As I’ve said time and time and time again, cancer is complicated, real complicated. The relative contributions of genetic mutations, metabolic derangements, immune cell dysfunction, and influences of the microenvironment are likely to vary depending upon the type of tumor and, as a consequence, require different treatments. In the end, as with many hyped cancer cures, the ketogenic diet might be helpful for some tumors and almost certainly won’t be helpful for others. Dr. Seyfried might be on to something, but he’s gone a bit off the deep end in apparently thinking that he’s found out something about cancer that no one else takes seriously—or has even thought of before.
BTW, saying that someone "is a bit of a quack" is an ad hominem fallacy. The article linked talks about the "keto" part of the protocol, it does not discuss the glutamine portion of the treatment. I'm not sure who is right, but I would love to see, someone debunking it with data.
Protocol: https://www.nature.com/articles/s42003-019-0455-x
No it is not. If you want to consider informal logical fallacies, it is closest to "poisoning the well", as I am tarnishing his name in an effort to make you not believe is claims. I am not saying he is wrong because he is a quack, I am saying he is a quack, and here is an article going into why he is wrong.
> but I would love to see, someone debunking it with data
The problem is Seyfried doesn't have data. His science is bad and extrapolating from marginal results. Some parts of these ideas might pan out, but all I've seen indicates he's made this his hobby horse is riding it.
Speaking of fallacies, dismissing an argument because you found a single fallacy within it without addressing the main substance of the argument is known as the fallacy fallacy.
There is a lot chew on in that comment and that article beyond "a bit of a quack"
The fallacy fallacy is when you dismiss a conclusion based on a faulty argument. Him not addressing the argument isn't that. Him dismissing the conclusion of the argument is that.
Speaking of the fallacy fallacy, calling out someone for calling out someone for a fallacy using the fallacy fallacy is the fallacy fallacy fallacy — as an initial fallacious fumble may indeed foretell further fallacious findings in a given figure.
Oh nice to learn that. I knew a less formal version in my country which we call "the fat virgin fallacy" which is when you denounce a fallacy in a somewhat informal less strict conversation. Made popular because libertarian argie president liked to tweet and denounce fallacies like so.
Innovation comes in two flavors: incremental, which is what you'll mostly get from your establishment, and paradigm shifts, which you're more likely to get from your cranks.
That's not to say all (or even many) cranks are secretly geniuses. But they're able to explore parts of the search space that the establishment can't for all sorts of reasons.
In other words, your establishment has all the resources and can incrementally make its way to local maxima better than any crank could. But any members that start making bold claims that might threaten that establishment will be punished, out of a simple survival instinct.
Here are five of the best historical examples of individuals who were considered cranks or fringe by their peers but ultimately brought about a paradigm shift in their respective fields. Each faced intense skepticism and mockery, yet their ideas transformed our understanding of the world:
### 1. *Ignaz Semmelweis (Medicine)*
- *Contribution*: In the 1840s, Semmelweis discovered that hand-washing drastically reduced maternal deaths in maternity wards.
- *Why He Was Considered a Crank*: His idea that "invisible particles" (what we now know as germs) could cause infection was ridiculed. At the time, the concept of doctors themselves transmitting disease was unthinkable, and many in the medical community were deeply offended.
- *Impact*: Although he was dismissed and ultimately died in an asylum, his insights laid the groundwork for antiseptic practices. Today, Semmelweis is honored as a pioneer of infection control, and hand-washing is a cornerstone of medical hygiene.
### 2. *Alfred Wegener (Geology)*
- *Contribution*: In 1912, Wegener proposed the theory of continental drift, suggesting that continents moved across the Earth’s surface.
- *Why He Was Considered a Crank*: Geologists at the time thought his theory was absurd because Wegener couldn't explain how continents could move. He faced widespread ridicule, with critics dismissing his ideas as pseudoscientific.
- *Impact*: Decades later, with the discovery of plate tectonics, his theory became foundational to modern geology. Wegener is now recognized as a visionary, and his ideas radically changed our understanding of Earth's structure and history.
### 3. *Louis Pasteur (Microbiology)*
- *Contribution*: Pasteur’s germ theory of disease in the 1860s revolutionized medicine, suggesting that microorganisms were responsible for causing many diseases.
- *Why He Was Considered a Crank*: The prevailing "miasma" theory held that diseases were caused by "bad air," not germs. Many in the scientific and medical communities mocked Pasteur’s ideas, calling them "preposterous" and even "dangerous."
- *Impact*: Pasteur’s work ultimately led to sterilization techniques, vaccines, and pasteurization, transforming medicine and public health. Germ theory is now a foundational concept in microbiology, and Pasteur is one of the most celebrated figures in medical history.
### 4. *Nikola Tesla (Electrical Engineering and Physics)*
- *Contribution*: Tesla developed and promoted the use of alternating current (AC) electricity, which ultimately became the standard for power transmission worldwide.
- *Why He Was Considered a Crank*: Tesla’s ideas about AC were met with hostility from proponents of direct current (DC), most notably Thomas Edison. Tesla’s later ideas, including wireless energy transmission, were seen as wildly impractical and even "insane" by many of his contemporaries.
- *Impact*: Despite the ridicule, Tesla’s AC power systems are now the global standard, and his ideas on wireless communication foreshadowed modern radio and telecommunications. Today, he’s recognized as a visionary inventor who changed the course of technology.
### 5. *Barbara McClintock (Genetics)*
- *Contribution*: In the 1940s, McClintock discovered "jumping genes" (transposons), showing that genes could move within and between chromosomes.
- *Why She Was Considered a Crank*: Her findings were so radical that her peers couldn’t accept them, with many scientists dismissing her ideas as highly unlikely or even bizarre.
- *Impact*: Her work was eventually recognized as groundbreaking, earning her a Nobel Prize in 1983. McClintock’s discovery of transposable elements opened new avenues in genetics, shaping our understanding of genetic variation and evolution.
---
These five individuals were openly mocked, ignored, or dismissed by the scientific communities of their time. However, they each persevered and eventually brought about paradigm shifts that redefined their fields. Their stories highlight the importance of challenging conventional wisdom and illustrate how transformative ideas often come from those who are willing to go against the mainstream.
I think what your initial comment was missing is it implied just being a quack was somehow a path to new ideas.
What his is missing, in the context of Seyfreid, is that what Seyfreid is promoting:
1. Has been studied quite extensively.
2. The results of said studies do not match his claims.
3. He can't even get the details right on the data he's trying to present.
The examples you gave are different in that while the action was not understood, they explained existing data.
In particular, I think the challenge with your initial comment is that spouting bullshit is an entirely free enterprise. Testing bullshit is an expensive enterprise. So your system provides no meaningful actionable way to get to a new, coherent, understanding of the world.
And, let's be honest, Tesla is a mixed bag. He was a total crank in a lot of ways. But also a genius in other ways. Linus Pauling is similar. Complete crank around vitamin C.
A less quackish way to say the same thing is that a scientific paradigm tells people along which lines to look for answers. Looking at areas the paradigm doesn't recommend are generally not worthwhile, but occasionally you get something important, which doesn't fit in the current paradigm but will eventually help form the new paradigm.
A good heuristic could be "seems like a solid scientist in general, but this niche where he was a top level researcher led him to a split with the main stream" vs "consistently takes anti-mainstream views and has no contributions within the paradigm "
You could skip to a better heuristic: they (provably) did a thing that the mainstream people said was impossible. That other stuff is part of the blind spot.
> 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.
Indeed, but humanity has managed to reduce "accidental deaths" as a whole by honing in on individual accident categories before - say, alcohol influence, combating that one by a multitude of means reduced car crashes, workplace injuries and domestic accidents.
Something similar might be possible for cancer as well. I think the solution already exists in nature, hidden within large animals, we "only" need to find out how precisely a 200 metric ton whale or a 10 ton elephant manages to beat statistic odds.
(Additionally, ever since COVID shone a spotlight on it, there is more and more evidence that lots of cancers are caused by viruses, most prominently herpes / genital cancer)
No one talked about a general cure for cancer here. What I meant is a general cure for the specific disease. Specifically, it's easier to cure a patient with Biliary Duct Cancer than to find a cure for Biliary Duct Cancer.
"Cancer isn’t one disease, it’s a catch-all term for a bunch of vaguely related ones"
Also that's a pretty common misconception, cancer is pretty well defined, abnormal cell growth. I agree that there will be no single cure, but it's like a viral infection, or a system intrusion. There may be many causes and cures will be different, but there's no disagreement over what is an isn't a cancer or a viral infection.
> Also that's a pretty common misconception, cancer is pretty well defined, abnormal cell growth
I don't think cancer biologists would subscribe to this simple definition (and it's not hard to find cases of 'abnormal cell growth' that do not ultimately constitute cancer). There have been, and continue to be, publications that pose the question of what it means for a patient to have cancer (cf https://www.cell.com/fulltext/S0092-8674(11)00127-9 )
Cancers quite clearly cause different diseases - it's even the case that cancerous cells can yield distinct clinical presentations simply based on whether they are primarily found in the blood or in solid organs.
I don't think anyone would disagree that 'viral infection' is also an unhelpful description. Viruses may transiently infect host cells and die out (the common cold, for example) or permanently become part of the host genome (consider the various herpesviridae).
The term "vaguely-related" is perhaps wrong, but the "it's not one disease" is clearly correct. Just like "viral infection" is not a single disease, going by your own example, but a series of completely different diseases that have one particular mechanism in common.
People are attracted to "I climbed a ladder, and it was safe" stories, which are usually presented without the context on the societal harms of ladder use in aggregate.
Man ain't nothing one disease. Look at COVID. Why did the vaccine fail. Not one disease. Population variation of the virus. blah blah. Renal failure - shades of grey, shades of causes. Heart failure - shades of grey, shades of failure. High blood pressure - how high? Why? Who says it's high?
You see? Your point is unremarkable in the face of all diseases.
The handwavey reddit tier explanation you're shooting for is that cancer is genetically unique in each person. Which really is a gross oversimplification, there are non-unique genetic components of that are common themes across many cancers- TP53, PIK3CA, BRCA, KRAS, MSH, etc etc.
So such an explanation is lame because if there's all these common genes than it seems curable - which it would be if that were the long and short of it. Reason it's hard to cure is half those genes I name jack up replication machinery so it makes errors all the time. So now our cancer is not a genetically unique cancer, it's billions of genetically unique cells in one body, always mutating. Now it's not drug developer versus cancer, it's drug developer vs Charles Darwin, evolution. And of course there is a solution for that. Immunotherapy, or as the link shows, immunostimulation. Because the immune system also uses evolution / artificial selection!
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.
The first problem was finding the damn trial in the first place since nobody wants to share information as it might tell their competitors something.
And then he had to pass the prerequisites for the trial. The problem there was navigating the US health system that moves like a glacier and either couldn't get a test run fast enough or wouldn't take a test from somewhere else.
Finally, after all that, then you reached the "Right-to-try" level where there were different questions of whether to subject him to the treatment based upon whether the doctor thought it might or might not be effective.
And through it all, he and his wife understood that the odds were very, very bad.
To me, the counterargument to "Right-to-try" are the Alzheimer's drugs. The underlying Amyloid hypothesis appears to be broken and fraudulent and all the drugs based on it have failed miserably. And, yet, one got through FDA approval because the consumer push is so huge and everybody wants something--even if it doesn't work.
There is big money behind pushing the boundaries--be very careful about eroding them.
To me, the Alzheimer’s drug story is an argument for right to try laws.
If the drug is available to the desperate, then the push by the public to shortcut the process goes away and the process can be done correctly. Those who are desperate can try, with the understanding that it might not work. The process can continue unmodified because there isn’t a pressure to get the drug out to the public because it is available.
Except that the drug has negative side effects and does not work-not even with the most optimistic interpretations.
If you allow that, you're back to HCQ for Covid territory. Or all the autism "treatments".
The problem is that most people think of medical outcomes as having 2 results when there are 4.
The 2 everybody thinks about are "drug given->patient gets better" and "drug not given->patient gets worse". But there are two more cases.
"drug not given->patient gets better" is wonderful in the super-rare cases when it happens and is totally unproblematic.
The problem is that the case "drug given->patient gets worse" is common--doubly so for experimental treatments--exponentially so for experimental cancer treatments. And the problem is that it can be due to either the disease or the drug or both. This case is the one that you can't explain in a soundbite. And it's one of the big hurdles in drug discovery.
The vast majority of people simply will never get this. We know this. We watched it play out in real time--multiple times.
Sure, if you made everybody pass a Bayesian statistics exam before they could get their treatment, that would work. But then you'd be "gatekeeping a cure".
Stupidity is the norm, not the exception, and greedy, evil bastards are not unrare. Your rules have to, sadly, take that into account.
> "drug not given->patient gets better" is wonderful in the super-rare cases when it happens and is totally unproblematic.
It is not actually super rare. One might even say this is the most common case. I guess what you can say is that spontaneous remission is super rare to happen for “serious” diseases. But that is circular reasoning because we kinda define serious diseases by the fact that it is rare to just get better without treatment from them.
Why is this important? Because this is one of the main wrinkles with drug testing. If some people just get better on their own then you have to be very carefull with statistics and double blind protocols. Because if not you might confirm your belief in an innefective, or maybe even harmful treatment by random happenstance. Therefore i would say this case is also one of the big hurdles in drug discovery.
Otherwise i agree with the general gist of your comment.
I think this belief is how you end up with people who think you need some cocktail of OTC drugs every time you get a cold.
A child gets a run of the mill cold, parents give them all the OTC things, kid gets better and assumes it must have been because of the drugs. In reality, they didn't need any of it.
That doesn't sound like an argument against the right to try, that sounds like an argument for requiring specific, intentionally frightening language around informed consent. The thing is, probability is a bitch, and emotionally filtered probability is the devil. An experimental treatment for a terminal illness can be 99% likely to result in a quicker or more painful death, but is it really right to deny the 1% chance to someone who understands the statistical choice in front of them?
Another facet of this is: should insurance pay for it? Or should the patient bear the financial burden when they want to try a shake-oil cure? Especially in this case when the drug is now FDA approved?
> Except that the drug has negative side effects and does not work-not even with the most optimistic interpretations.
One of the difficult things about ethics (including medical ethics) is that everyone has slightly different opinions.
But in MY opinion, if someone's medical situation has an extremely high likelihood of extremely poor outcomes (terminal cancer and severe Alzheimer's both qualify), then I think it is perfectly acceptable to allow them to use a treatment which is well understood to have no useful effect and many harmful side effects.
I have an ethical problem with encouraging them to do this; I have an ethical problem with profiting from them doing this; but I think that prohibiting them from doing it (as we do today, mostly) is also wrong. EVEN IF the patient is "too stupid to understand it correctly".
> I think that prohibiting them from doing it (as we do today, mostly) is also wrong. EVEN IF the patient is "too stupid to understand it correctly".
There's a lot that can be said on this, but it's harder to defend that position if the decision has an effect on others. The obvious situation that arose during the pandemic is someone experimenting and then creating more work for an already overwhelmed hospital system. Then you have to ask about paying to clean up the mess - should it be health insurance, that is paid by everyone else? If you die, what are the effects on your family? How do you draw the line where "well they don't have much time left anyway" vs "they killed themselves experimenting with flu treatment"?
> Clinical use of this treatment was driven by women with breast cancer and advocacy groups, such as ACT UP; they believed that the FDA treatment approval process was too slow.
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
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.
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.
Depends on how it's marketed. As long as they avoid making specific health claims (say "boost immune function" instead of "cures disease X") they can get away with it. If it's "homeopathic" they can even be sold on the same shelves as actual medicine, with similar looking labels.
Ish. You can't say that a pill or treatment cures cancer if there's no evidence to back that up. Of course in private I'm sure that's said all the time.
My concern with lowering the bar for advertising such services is it makes it easier for someone to jump in with "Our clinic is actively researching cancer treatments and offers free experimental drugs".
I could be wrong, but my understanding is that "free of charge" is already legal, and the FDA only regulates drugs that are sold and not ones that are given freely
I know that a drug company can't skirt regulations around clinical trials simply by making participation free (in fact, clinical trials usually pay the subjects.)
I don't see the issue or point of limiting profitabilit, what am I missing?
Here's the scenario I have in mind.
John has an uncommon cancer X with no cure.
John contacts Cancer R&D Corp.
John pays 80% of his life savings to R&D corp for research into his specific cancer X and provides himself as a test subject in the meantime.
R&D corp attempts to find a cure for the disease, if the mission fails and John dies, in the future if other patients with cancer X appear, they can take over from where they left.
Payment can be split into an upfront half for research and bonus paid upon a successful cure (or year of quality life milestones) to give incentives for actual success. So as to avoid companies from benefitting from never finding a cure.
The issue is that fraudsters would like nothing more than to call themselves R&D and to sell BS to desperate people looking for a cure.
That already happens very frequently. For example, bleach enemas to cure autism [1]. Colloidal metals to cure cancer [2]. And a whole host of other cure-alls.
Now imagine you have a mechanism where they can claim to be legitimate research AND there is an incentive to bilk people out of 80% of their life savings.
Heck, even imagine what happens if legitimate for profit companies can use this route for revenue generation. If they have a route to sell drugs which has less regulation and liability, why would they ever release a drug through the full FDA process? And why, you might ask, is regulation needed for this sort of stuff? Well, think Vioxx.[3] Sure, maybe this cancer drug works but it also might give you a heart attack. Without getting it fully approved or researched drug manufacturers have no reason to actually look into downstream effects. They have every incentive to just keep it on the market (like they did with Vioxx) and ignore evidence of adverse results.
Taking profit out of the equation makes it so that the research isn't and can't be endless. It makes sure there isn't a perverse incentive to make lethal drugs that work good enough for some diseases. I'd love it if we could have a win win, but the free market loves to reward bad actors.
"The issue is that fraudsters would like nothing more than to call themselves R&D and to sell BS to desperate people looking for a cure."
So?
Because there's ilegitimate companies you should outlaw legitimate companies?
Should we ban banks and stock brokers because ponzi schemes exist? What makes you think there would be less ilegitimate companies, it's possible even that there would be more ilegitimate companies.
"Heck, even imagine what happens if legitimate for profit companies can use this route for revenue generation. If they have a route to sell drugs which has less regulation and liability, why would they ever release a drug through the full FDA process? And why, you might ask, is regulation needed for this sort of stuff?Without getting it fully approved or researched drug manufacturers have no reason to actually look into downstream effects. They have every incentive to just keep it on the market (like they did with Vioxx) and ignore evidence of adverse results."
I'm not an expert on the subject, but I do know that the subject of the article and what you are talking about are 2 distinct domains. One thing is developing a drug or treatment for a common disease. And another is treating a specific patient. Right? Two very distinct services/products with very different regulations. I do know at least from the import regulations my country has laxer requirements for infrequent diseases. Of course a treatment for diabetes can support stricter regulations than for Cancer of the Biliary Duct.
Additionally what I suggested wasn't even treatment, I proposed just Research & Development, this is already possible through donations.
> Because there's ilegitimate companies you should outlaw legitimate companies?
No, you should have regulations and enforcement to ensure that stop illegitimate businesses from operating. Those regulations might make it harder for legitimate businesses to operate but that's to ensure public health isn't sabotaged by bad actors.
> Should we ban banks and stock brokers because ponzi schemes exist?
No, we banned ponzi schemes through regulations. That's what I'm proposing.
> What makes you think there would be less ilegitimate companies, it's possible even that there would be more ilegitimate companies.
There's always going to be people looking for loopholes in the law to make a buck. That's why the law needs to be constantly updated and these loopholes closed. You'll never 100% close everything, but that doesn't mean you shouldn't be constantly looking for improvements.
> I'm not an expert on the subject
You should read into it. The fact is that, particularly with medicine, we have to be careful about the leeway we give to companies. You simply have to assume that anyone selling something is amoral. Without regulation, companies can and do run the calculus of "How much will these deaths cost us vs the money gained from selling the product".
Vioxx isn't an isolated example either. Look up "Dalkon Shield", a product that had about a 1% chance of causing sepsis which killed and crippled literally hunderds of thousands of women. A product that, after this was found out, after the lawsuits flew and it was removed from the market, was shipped to and sold in Africa for several years.
My point is, that whenever anyone starts talking about relaxing regulations and making it easier for a drug company to profit, we should be thinking about the above abuses. Because companies can and will abuse the system.
You may still say "so what" but you should be thinking about "So what if the treatment cures cancer, if it causes a stroke, heart attack, or premature death when other maybe less effective treatments may have extended life". Cancer isn't the only thing that kills people and there are fates worse than death that drugs can cause.
> Two very distinct services/products with very different regulations.
The discussion here is how do we make individual treatments like the one in the article more available. The points I'm raising is that any increase in availability needs regulations to ensure it's not abused. I've given specific examples where regulation/enforcement has been lax which has allowed grifters and drug companies to directly and knowingly harm the public.
"regulations might make it harder for legitimate businesses to operate"
We just have a very different view. I think regulations HELP businesses.
For example, a well meaning company wants to make a cure for AIDS, a good regulation would require a study of length and size proportional to the volume and lethality of the disease. If the study is small, the regulation may allow small trials, and its first batch of patients be itself a trial for bigger batches.
If there were no such regulations, the well-meaning company may have had a lot of success, but maybe they would have gone to market too fast and detected a side effect in a big trial instead of a small trial.
Conversely, a terrible company might either choose to comply with the trials, and genuinely pivot to legitimately seeking a cure. Or avoid regulation altogether.
Good regulation is not an equal cost imposed to both parties, and never the cost is higher to the good parties. Regulation is an incentive that when followed leads inevitably to the results desired.
"That's why the law needs to be constantly updated and these loopholes closed. You'll never 100% close everything, but that doesn't mean you shouldn't be constantly looking for improvements."
Also not at all how I view the law. The law is written once, what is updated is the case law, the court rulings. Only when there is a change in technology other foundational changes, or very biig learning cycles (50 years), do we make another attempt at the same problem. You don't update a law every 3 years patching for loopholes playing a game of catch me if you can.
I responded to this in other posts, but this would be throwing the baby with the bath water. And it's especially bad as the good suffers more. Legitimate companies will follow the law, but the ilegitimate actors will just sell mystical crystal anyways.
Conversely, if you ban actually charging for last-attempt experimental research services, then those desperate people will only be left to seek:
1- Honest researchers who can't charge too much.
2- Unscrupulous quacks who will take all your money regardless of law.
With the second option being much more common due to incentives. If however you allow research facilities to take donations/payments to fund research related to a specific disease, then you will increase the incentive for legitimate companies, even if the odds are still low or close to 0.
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.
I think you also need a caveat that failures must be recorded, and a specific treatment can only be used so many times without success. That will avoid providrrs who are self-deluded about the efficacy of their favourite drug/therapy.
Patients with incurable or hard to cure diseases are susceptibile to be exploited by companies or doctors that want to try unproven treatments on them. On the other hand, telling someone they are not allowed to do everything they can to save themselves is equally bad.
Centres of disease control (in the US and elsewhere) track morbidity and mortality on a wide range of conditions, which is one standardised answer to your question. There are also (a small number of) independent or unorthodox researchers who pursue specific avenues. You'll of course find the frauds amongst these (e.g., Andrew Wakefield, who promulgated anti-vax theories and falsified research toward same), but there are also notable medical advances which have emerged in such contexts, such as J. Robin Warren and Barry Marshall's identification of Helicobacter pylori as the principle cause of stomach ulcers, rather than stress:
Jessica Tanenbaum, "Delayed Gratification: Why it Took Everybody So Long to Acknowledge that Bacteria Cause Ulcers" (2005)
The “might work” is doing a lot of heavy lifting in this sentence. How strong must the evidence be for the hypothesis of efficacy to be considered reasonable?
The person being treated, or their family, might change their mind after the treatment fails, and cry bloody murder. And get sympathy. So the only defense is to deny treatment. In hindsight, with the bad consequences fixed, they will claim they should have been prevented from getting the treatment and whoever did not prevent them is at fault.
Do you doubt there are people who refuse to accept the consequences of their own actions and seek to place blame anywhere else they can?
Or indeed some third party might do the claim with hindsight. Prosecutors or whatever. People can be irrational, in general.
The legislative institutions are not isolated from the people. The opposite in fact, in democracy they must respond to the will of the people. So if enough people are irrational and wish to assign blame somewhere else after they assumed a certain risk (and/or enough people support this even when not involved), there can be no legislative solution.
It would require legislative bodies to pass laws against the wishes of the people. Maybe in China :)
I find this comment somewhat disingenuous. People have been arguing about allowing more experimental end of life treatments for at least 40 years of my life. I grew up during the AIDS crisis and there were all kinds of quacks selling this or that to take easy money from desperate people. If what you say is true, then why hasn't it already happened? After all, isn't 40+ years long enough to argue about it?
Because decades of arguing in no way implies that "the truth" or correct policy will fall out of politics. Abortion and marijuana legalization are two contemporary (and much more prominent) examples.
It sounds like this might be a bit like off-label medicine though. It would need to start with a doctor. Maybe any plan needs an independent sign off from another doctor who is qualified enough.
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.
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.
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!
The US government granted many of the "scientists" immunity in exchange for giving over all the data they had learned and helped even cover it up lol
The Japanese did some real fucked up shit in these experiments like chopping off limbs and reattaching them to the opposite side and slicing open pregnant women.
They also flew low flying planes over Chinese cities and dropped Plague-infected fleas which killed tens of thousands of people.
In total, they killed hundreds of thousands of people.
TIL the USA not only let the people they captured go free in exchange for the information they had on Unit 731, they continued experiments until 1956, well after the war, though this time with Japanese victims.
I'm not confused about why the field exists. And I agree that something needed to be done to prevent repeats of those horrors. But the current state of the field is (in my opinion) unacceptable.
When something bad happens, the person it happened to or their family will often be (understandably) irrational, and make the maximum amount of fuss and ask for the maximum damages and penalties. Even if the risk was reasonable and ethical. So naturally researchers, medics, take extra precautions. Being reasonably ethical might not be enough protection.
One thing that might be done (in my clueless opinion) is accept that sometimes shit happens and preventing the victim from getting exaggerated revenge or damages or whatever.
I'm sure at least once it happened that people who actively requested experimental treatments turned around and sued or called for prosecution after their experimental treatment took a bad turn. Of course researchers will be reluctant to provide experimental treatments.
A hospital I worked at would only provide dialysis to immigrants if they were in florid kidney failure. So they’d come to the ER dying, get dialysis once, then get released with no follow-up. They’d have to wait til they were back in kidney failure to come back, no preventative care was funded by the fed so they just stuck to that. There is no ethics in the American medical system. Anything claiming to represent it is a scam.
It's the law that US hospitals have to provide care regardless of ability to pay in an emergency but not preventative care. Medicaid, which would cover dialysis for most poor people doesn't cover unauthorized immigrants. Your hospital is functioning as the law directs it to. I was going to put "as the law intends" but our system is very much a Frankenstein quilt with many effects that nobody really intends. But politicians know that people would be angry if they heard an immigrant was left outside a hospital to die of kidney failure and they know people would be angry about providing non-emergency medicine for free and they know that not many people will notice we collectively spend more money this way and most of the people who do notice won't see how it makes everybody's medical care more expensive rather than just hurting hopsitcal owners and unauthorized immigrants.
Well, given recent events... maybe some people vote for "no free lunch out of my tax money", even though they themselves may end up needing the "free lunch" (the federal funded dialisys). Are you sure it's not ethical to deny it to them in this situation?
On a large enough scale, we decide the rules that apply amongst us. How could it be unethical? Who's being unfair to us, martians? God?
We're being unfair to each other... seems fair that we get unfair treatment.
That is the standard for American emergency departments, and they do that because EMTALA requires them to treat anyone enough to keep them from dying, if possible - but that's all.
> cost/benefit calculation here is way over-cautious ... theoretically induced harm... fuzzy concerns about population-level harms
It would be nice to at least have proper investigation of last alleged lab leak. When you talk about "fuzzy concerns" in light of last 4 years, I think you can not be serious.
There are cases where ultra high security virus lab sold disposed corpses on food market!!!
The only people who could do that investigation would be China, and they seem disinclined. Or possibly they already have done the investigation and aren't telling the rest of the world their results.
Medical ethics is a bit tricky. It's like the trolley problem on steroids.
I mean pulling the lever so only 1 person has to die instead of 5 seems simple until suddenly you're harvesting a healthy person's organs to save 5 others.
Heck we've seen it in action in covid-19 research. How much more useful data could we have had if we infected people deliberately? (or at least didn't just wait for them to get infected by chance) Sure some tens of people, maybe hundreds could have died as a result, but what is hundreds for a disease that kills millions? Besides, getting infected isn't even a death sentence, we've sent plenty of soldiers towards way worse odds.
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.
There are a couple OVTs that are approved by the FDA and it's a rather active area of research. One of many in the recent explosion of biological cancer treatments (immunitherapies/cell therapies, etc etc). With any cancer treatment the exact same procedure will struggle to generalize well across cancer types and you have to regulate for safety and efficacy rather strongly. Especially when the treatment is lab grown measles or herpes virus strains that are genetically engineered.
> With any cancer treatment the exact same procedure will struggle to generalize well across cancer types
As someone with family members living with cancer, modern genetic sequencing has been the biggest surprise.
Not that we could sequence tumors, but that we could do so at scale and classify therapies by effectiveness against specific mutations (in general, even ignoring targeted therapies).
Widespread cancer sequencing seems like the missing link to promote better outcomes, particularly in metastatic cases.
It's already an importany part of diagnostics and treatment! A lot of therapies are approved not just for specific cancers but for specific cancers with specific mutations. As with everything cancer it turned out to be more complicated than expected (not surprising given that it's essentially an outcome from chaotic uncontrolled genetic mutation and evolution) but sequencing progressing at like an order of magnitude faster than Moore's law and better understanding of all the -omics is making a dent
Yes, when a family member was fighting metastatic pancreatic cancer, their doctor had a tumor biopsied and sequenced to see if they could try one of the new immunotherapies. Sadly no, and I learned that only a small percentage of hard cancers are yet treatable that way (which still helps a significant total number of people though).
Well, there are two broadly different ways in which sequencing can help.
1. "Targeted therapies" that directly target unique surface features that specific mutations create. E.g. BRAF
2. Sorting most effective treatment by cancer type, where cancers driven by different mutations in different types of cells respond to specific treatments better or worse. Especially important for metastatic where you may have a pancreatic cancer mutation tumor in your lungs, etc.
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.
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
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.
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.
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.
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.
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.
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.
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.
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.
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?
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.
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.
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.
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?
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.
> Is it considered unethical to do medical experiments on yourself without any oversight like you would find in a typical human subject trial?
Note there are different contexts at play here. When someone says "ethics" in a scientific context, it may encompass scientific integrity, avoidance of questionable research practices, reproducibility, etc., as well as medical and moral ethics. The speaker may not even be fully aware of these distinctions, since the subject is often taught with a rule-based perspective.
Experimentation on oneself is often _scientifically_ unethical (i.e., when done with the intent to make a scientific discovery) because:
1. The result is often too contaminated by experimental integrity issues to have scientific value. As another comment in this thread notes: "sample size of 1, confirmation bias, amped-up placebo effect, lack of oversight, conflict of interest when the patient is the investigator". Lack of oversight means no one is checking the validity of your work, it's not a permission thing. Every issue that is blamed for the so-called reproducibility crisis is worse.
2. Due to publication pressure, abandoning the cultural prohibition against self-experimentation amounts to pressuring everyone to self-experiment to grow their CV by a few quick N = 1 studies, or do something risky when their career flags. Obviously, oversight to ensure that self-experimentation proceeds only in cases of terminal disease mitigates this concern.
In practice, journal editors currently provide oversight addressing point #2, which is why work like what we're discussing here still gets published. See also Karen Wetterhahn's valuable documentation of her (accidental) dimethylmercury poisoning (https://en.wikipedia.org/wiki/Karen_Wetterhahn).
Experimentation on oneself in an attempt to cure your own illness by any means at your disposal, provided you do not harm others, is not _morally_ unethical IMO. It just rarely has a scientific role.
You can do whatever you want to yourself. You can't hurt/encourage others, and the data may be no good, but certainly you have informed consent if you're the only subject
That's not actually true though is it, suicide is illegal in many jurisdictions. Not just self- euthanisation towards the end of life anyway (which is more controversial/media-discussed) but any form.
The context of that comment is a parent comment asking about medical self experimentation. You're also not allowed to administer scheduled substances to yourself in many jurisdictions and plenty of other things like that but that's not what I was replying to.
To give the authorities a reason to intervene. Which in turn is justified by most people who fail to commit suicide being happy, in retrospect, that they failed.
There's probably also a crowd who want it to be illegal because they view suicide as a sin, though personally I think that justification for a law seems like a violation of religious freedoms.
> Which in turn is justified by most people who fail to commit suicide being happy, in retrospect, that they failed.
If true, that sounds like survivorship bias (literally). Those who aren't happy about the failure will just try again and won't be counted in the statistics.
I'm pro-choice, but I think that it's not an unreasonable stance if you believe that the fetus is an alive human being with intrinsic worth, or a soul. (Souls aren't real, but
>75% of Americans believe in them.)
None of that is a refutation of what I said though, since I reject the notion that belief in the existence of the soul can be used as justification for stripping a person of their bodily autonomy.
If we found out cancer cells had souls tomorrow, exactly no one would be screaming “but their souls!” at folks walking into a cancer clinic.
„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.”
I don't think it's a good ground to rejected observational data. If you want the published data to be less biased you should introduce as little arbitrary (not connected to the quality of data itself) barriers as possible.
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.
> This is just a statement by someone that is desperately looking for a negative point
No it isn't.
This is an expert explaining why journals have ethical concerns publishing the paper and why those concerns matter.
>> “I think it ultimately does fall within the line of being ethical, but it isn’t a slam-dunk case,” says Sherkow, adding that he would have liked to see a commentary fleshing out the ethics perspective, published alongside the case report.
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.
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.
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
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.
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.
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.
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.
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 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.
Uber offers higher rates when moving into an area, sometimes the point of making a loss per ride. Once an area is established, they cut rates to drivers. Obviously, the drivers make the rational decision you’ve outlined above; but the taxi companies don’t come back.
Not only that, how would the proposed alternative make any sense for Uber? They spend a lot of money to undercut the taxi companies, only to abandon the market as soon as they have no competition?
The predatory practice would be to raise prices at that point, not to abandon the market, but they can't even do that very much because then they'd be undercut by Lyft or the taxi companies actually would come back.
Uber burned investor money in major markets for years operating at a loss to drive smaller operations out of business, only to become at least as expensive as their former competitors but as the only game in town.
> how can they be underpaying people (i.e. paying them less than competing employers) and yet people still choose to do it?
"paying them less than competing employers" being synonymous with "underpaying" is probably not a great assumption, although I'm sure it's the definition an MBA would use.
Most regular people are choosing the least-worst option in terms of employer. That doesn't mean that the least worst option is necessarily good, or paying fairly on an absolute scale. It could just be the job that means workers can handle one unexpected large bill before going bankrupt instead of not being able to handle any at all working for the next-worst option.
In other words, there's an imbalance of power between employers and the "regular person" workforce. The workers technically have a choice of where to work, but in many cases, none of the choices are good.
Right, but the employer they choose is presumably the one offering the best deal in the world from their point of view. Wouldn't it make more sense to be mad at every other employer for not proposing better pay, than the one that's offering the best pay for that worker?
One is to ban it. This has some obvious drawbacks in weak economies, e.g. if the kid's choices are to work or to starve and then you ban them from working, they starve. It also interferes with kids being entrepreneurial. What's wrong with a kid mowing some lawns after school for spending money?
The other option is to create an economy strong enough that parents have no need to put their children to work instead of sending them to school, and then they don't.
What developed countries often do is to do the second one, then the first one, because that has some evolutionary fitness in politics. The more severe drawback of the first method is mitigated when the second one is in place, because then you're banning something people mostly wouldn't be doing anyway. Meanwhile politicians then get to claim credit for "solving the problem" by passing the ban, after it was already solved by something else.
These alternatives generalize to most types of labor restrictions (e.g. minimum wage). The reason only ~1% of people make minimum wage is that minimum wage is dumb so the rate is set low enough to minimize the damage done by the law, while still giving politicians something to claim credit for passing. What you actually want to do is the following: Use transfer payments (e.g. EITC/UBI) to help people making low wages, foster a stronger economy where people get paid more (e.g. make it easier to start a business), and lower the cost of living by preventing market consolidation and regulatory capture (e.g. enforce antitrust and don't allow restrictive zoning to constrain the housing supply).
Then you don't have to ban people from accepting less than a given amount of money because they would be under no pressure to do that to begin with.
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.
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.
Don’t distract this thread with a shit tier “Uber sux” analysis.
Cabs were completely unusable in most cities before Uber unless you were staying at a hotel where they hung out. They also paid their drivers as poorly as Uber does and the benefit just went to the owner instead of Uber. It’s not like cabbies were specially trained.
Taxis were more expensive because they were so fucking shitty that the 5 fares a day a car would get had to cover the expenses.
>leaving the town with zero practical transport options.
Again, taxis were not practical before. It was more reliable to beg strangers at a bar for a ride home than to get a cab to show up in the 90s.
I'm not sure where you got the idea my post was claiming taxis were superior in any way, I explicitly said Uber was better. Taxis weren't practical but they at least they existed. I have lived in cities that used to have taxis which were annoying and unreliable, but after Uber came and left there was literally no way at all to get from point A to point B without getting a ride from a friend.
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.
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?
>> 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.
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.”
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.
I mean it’s kind of the opposite of a randomized double blind study, so from a public health stand point it’s an anecdote, a single datapoint with any negative results presumably unreported.
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.
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.
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).
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.
For the most part it is devolutionary warfare for the cancer.
There is no such process.
You should read up. This is basically cancer 101.
According to Thomas Seyfried, cancer is indeed one disease, fundamentally a metabolic disease [0]. Seyfried's theory suggests that cancer stems from mitochondrial dysfunction, which disrupts cellular metabolism and leads to abnormal cell growth. He argues that the root cause of cancer is not genetic mutations, as commonly believed, but rather metabolic disturbances that alter how cells process energy. Basically returning the damaged cells to "old pathways" of energy generation, without oxygen: fermentation. This process, known as the Warburg Effect (named after Otto Warburg who first described it in the 1920s), shows that cancer cells primarily rely on fermentation for energy production even in the presence of oxygen - a phenomenon called "aerobic glycolysis." However, glucose fermentation is only part of the story. Cancer cells also heavily depend on glutamine, an amino acid that serves as another crucial fuel source. Through a process called glutaminolysis, cancer cells convert glutamine into both energy and building blocks for rapid cell division. This dual dependency on glucose and glutamine makes cancer cells metabolically distinct from normal cells.
This metabolic theory challenges the traditional somatic mutation theory, which views cancer as a result of DNA mutations accumulating in cells. Seyfried proposes that targeting the metabolism of cancer cells—primarily through dietary interventions like ketogenic diets or therapies that restrict glucose—could effectively "starve" cancer cells while leaving healthy cells less affected. His approach implies that a general strategy for treating cancer could involve targeting this metabolic vulnerability shared across many cancer types. Furthermore, this theory suggests that combination approaches targeting both glucose and glutamine metabolism might be particularly effective, as they would address both major fuel sources that cancer cells rely on. This could include strategies such as ketogenic diets (to restrict glucose), glutamine inhibitors, and other metabolic therapies that work together to compromise cancer cell energy production while preserving normal cell function.
0: https://nutritionandmetabolism.biomedcentral.com/articles/10...
One heuristic I like is a kind of reverse Occam's Razor: When no clear solution doesn't emerge even after a huge amount of searching, it's probably because the problem actually is complex, not because it's simple.
For example, maybe cancer does have a single unifying cause that can be fixed very easily. But the millions of hours put into studying it suggests otherwise.
This seems to be generally true about most things. Only very rarely do we get something super simple like goiter being caused by the lack of iodine, or stomach ulcers being caused by H. pylori.
Interesting point, though I think we should also consider that our ability to understand diseases like cancer has historically been limited by the observational and analytical technology available. For example, it was recently suggested that Alzheimer’s might be linked to Candida albicans, a fungus that naturally inhabits our bodies but could play a role in the disease. Just as it took time to discover that iodine deficiency causes goiter or that H. pylori produces ulcers, the complexity of cancer might partly stem from the fact that we don’t yet have the necessary technology to closely observe the cells and underlying mechanisms. It’s not necessarily the inherent complexity of the problem but our technological limitations that delay understanding—and possibly a cure.
The Candida link is interesting but not proven — so in that sense it's equivalent to your cancer guy.
The other discoveries predate a lot of advanced medical technology, though. They were the low-hanging fruit in that sense. The only semi-recent discovery I can think of is that the Epstein-Barr virus causes cancer, though that does not necessarily qualify as "simple". EBV is also implicated in MS. EBV could ultimately be one of those "unifiers" that could explain multiple diseases.
Thomas Seyfried is a bit of a quack. He believes a keto diet beats chemo for almost all cancers.
https://sciencebasedmedicine.org/ketogenic-diets-for-cancer-...
> Seyfried, in my readings, appears all too often to speak of “cancer” as if it were a monolithic single disease. As I’ve pointed out many times before, it’s not. Indeed, only approximately 60-90% of cancers demonstrate the Warburg effect.
> Dr. Seyfried presents mouse studies that are interesting and suggestive that there might be something to this whole ketogenic diet thing, at least in brain tumors, such as this one. However, this is what we in the oncology biz would call pretty preliminary data, worthy of further investigation but not supporting the grandiose claims that Dr. Seyfried makes.
> Irritatingly, during the same talk, Dr. Seyfried refers to having done a “biopsy” on the GBM when the case report clearly says that the patient underwent a partial excision of the temporal pole with incomplete debulking of the tumor, which is a different thing. > ... > He also heaps scorn on the hospital for insisting that the patient undergo standard of care therapy, clearly demonstrating that he has no understanding of clinical trial ethics.
> This brings me back to the question of whether cancer is a metabolic disease or a genetic disease, the answer to which I promised early on. The likely answer? It’s both! Indeed, a “chicken or the egg” argument continues about whether it is the metabolic abnormalities that cause the mutations observed in cancer cells or whether it is the mutations that produce the metabolic abnormalities. Most likely, it’s a little of both, the exact proportion of which depending upon the tumor cell, that combine in an unholy synergistic circle to drive cancer cells to be more and more abnormal and aggressive. Moreover, cancer is about far more than just the genomics or the metabolism of cancer cells. It’s also the immune system and the tumor microenvironment (the cells and connective tissue in which tumors arise and grow). As I’ve said time and time and time again, cancer is complicated, real complicated. The relative contributions of genetic mutations, metabolic derangements, immune cell dysfunction, and influences of the microenvironment are likely to vary depending upon the type of tumor and, as a consequence, require different treatments. In the end, as with many hyped cancer cures, the ketogenic diet might be helpful for some tumors and almost certainly won’t be helpful for others. Dr. Seyfried might be on to something, but he’s gone a bit off the deep end in apparently thinking that he’s found out something about cancer that no one else takes seriously—or has even thought of before.
BTW, saying that someone "is a bit of a quack" is an ad hominem fallacy. The article linked talks about the "keto" part of the protocol, it does not discuss the glutamine portion of the treatment. I'm not sure who is right, but I would love to see, someone debunking it with data. Protocol: https://www.nature.com/articles/s42003-019-0455-x
No it is not. If you want to consider informal logical fallacies, it is closest to "poisoning the well", as I am tarnishing his name in an effort to make you not believe is claims. I am not saying he is wrong because he is a quack, I am saying he is a quack, and here is an article going into why he is wrong.
> but I would love to see, someone debunking it with data
The problem is Seyfried doesn't have data. His science is bad and extrapolating from marginal results. Some parts of these ideas might pan out, but all I've seen indicates he's made this his hobby horse is riding it.
Speaking of fallacies, dismissing an argument because you found a single fallacy within it without addressing the main substance of the argument is known as the fallacy fallacy.
There is a lot chew on in that comment and that article beyond "a bit of a quack"
The fallacy fallacy is when you dismiss a conclusion based on a faulty argument. Him not addressing the argument isn't that. Him dismissing the conclusion of the argument is that.
Speaking of the fallacy fallacy, calling out someone for calling out someone for a fallacy using the fallacy fallacy is the fallacy fallacy fallacy — as an initial fallacious fumble may indeed foretell further fallacious findings in a given figure.
I know it's a joke. But he just named the phenomenon, not discredited the whole argument.
Edit: so you commited a faux meta fallacy
Oh nice to learn that. I knew a less formal version in my country which we call "the fat virgin fallacy" which is when you denounce a fallacy in a somewhat informal less strict conversation. Made popular because libertarian argie president liked to tweet and denounce fallacies like so.
If it quacks like a quack it’s fine to call it one.
Where else are the major discoveries going to come from when we've hit local maxima?
What is your complete, coherent, argument here?
Innovation comes in two flavors: incremental, which is what you'll mostly get from your establishment, and paradigm shifts, which you're more likely to get from your cranks.
That's not to say all (or even many) cranks are secretly geniuses. But they're able to explore parts of the search space that the establishment can't for all sorts of reasons.
In other words, your establishment has all the resources and can incrementally make its way to local maxima better than any crank could. But any members that start making bold claims that might threaten that establishment will be punished, out of a simple survival instinct.
Do you have any evidence to support this claim?
How's this? (Gpt answer)
Here are five of the best historical examples of individuals who were considered cranks or fringe by their peers but ultimately brought about a paradigm shift in their respective fields. Each faced intense skepticism and mockery, yet their ideas transformed our understanding of the world:
### 1. *Ignaz Semmelweis (Medicine)* - *Contribution*: In the 1840s, Semmelweis discovered that hand-washing drastically reduced maternal deaths in maternity wards. - *Why He Was Considered a Crank*: His idea that "invisible particles" (what we now know as germs) could cause infection was ridiculed. At the time, the concept of doctors themselves transmitting disease was unthinkable, and many in the medical community were deeply offended. - *Impact*: Although he was dismissed and ultimately died in an asylum, his insights laid the groundwork for antiseptic practices. Today, Semmelweis is honored as a pioneer of infection control, and hand-washing is a cornerstone of medical hygiene.
### 2. *Alfred Wegener (Geology)* - *Contribution*: In 1912, Wegener proposed the theory of continental drift, suggesting that continents moved across the Earth’s surface. - *Why He Was Considered a Crank*: Geologists at the time thought his theory was absurd because Wegener couldn't explain how continents could move. He faced widespread ridicule, with critics dismissing his ideas as pseudoscientific. - *Impact*: Decades later, with the discovery of plate tectonics, his theory became foundational to modern geology. Wegener is now recognized as a visionary, and his ideas radically changed our understanding of Earth's structure and history.
### 3. *Louis Pasteur (Microbiology)* - *Contribution*: Pasteur’s germ theory of disease in the 1860s revolutionized medicine, suggesting that microorganisms were responsible for causing many diseases. - *Why He Was Considered a Crank*: The prevailing "miasma" theory held that diseases were caused by "bad air," not germs. Many in the scientific and medical communities mocked Pasteur’s ideas, calling them "preposterous" and even "dangerous." - *Impact*: Pasteur’s work ultimately led to sterilization techniques, vaccines, and pasteurization, transforming medicine and public health. Germ theory is now a foundational concept in microbiology, and Pasteur is one of the most celebrated figures in medical history.
### 4. *Nikola Tesla (Electrical Engineering and Physics)* - *Contribution*: Tesla developed and promoted the use of alternating current (AC) electricity, which ultimately became the standard for power transmission worldwide. - *Why He Was Considered a Crank*: Tesla’s ideas about AC were met with hostility from proponents of direct current (DC), most notably Thomas Edison. Tesla’s later ideas, including wireless energy transmission, were seen as wildly impractical and even "insane" by many of his contemporaries. - *Impact*: Despite the ridicule, Tesla’s AC power systems are now the global standard, and his ideas on wireless communication foreshadowed modern radio and telecommunications. Today, he’s recognized as a visionary inventor who changed the course of technology.
### 5. *Barbara McClintock (Genetics)* - *Contribution*: In the 1940s, McClintock discovered "jumping genes" (transposons), showing that genes could move within and between chromosomes. - *Why She Was Considered a Crank*: Her findings were so radical that her peers couldn’t accept them, with many scientists dismissing her ideas as highly unlikely or even bizarre. - *Impact*: Her work was eventually recognized as groundbreaking, earning her a Nobel Prize in 1983. McClintock’s discovery of transposable elements opened new avenues in genetics, shaping our understanding of genetic variation and evolution.
---
These five individuals were openly mocked, ignored, or dismissed by the scientific communities of their time. However, they each persevered and eventually brought about paradigm shifts that redefined their fields. Their stories highlight the importance of challenging conventional wisdom and illustrate how transformative ideas often come from those who are willing to go against the mainstream.
Great, thank you.
I think what your initial comment was missing is it implied just being a quack was somehow a path to new ideas.
What his is missing, in the context of Seyfreid, is that what Seyfreid is promoting:
1. Has been studied quite extensively. 2. The results of said studies do not match his claims. 3. He can't even get the details right on the data he's trying to present.
The examples you gave are different in that while the action was not understood, they explained existing data.
In particular, I think the challenge with your initial comment is that spouting bullshit is an entirely free enterprise. Testing bullshit is an expensive enterprise. So your system provides no meaningful actionable way to get to a new, coherent, understanding of the world.
And, let's be honest, Tesla is a mixed bag. He was a total crank in a lot of ways. But also a genius in other ways. Linus Pauling is similar. Complete crank around vitamin C.
Establishment? Bro, you should listen to yourself...
A less quackish way to say the same thing is that a scientific paradigm tells people along which lines to look for answers. Looking at areas the paradigm doesn't recommend are generally not worthwhile, but occasionally you get something important, which doesn't fit in the current paradigm but will eventually help form the new paradigm.
A good heuristic could be "seems like a solid scientist in general, but this niche where he was a top level researcher led him to a split with the main stream" vs "consistently takes anti-mainstream views and has no contributions within the paradigm "
You could skip to a better heuristic: they (provably) did a thing that the mainstream people said was impossible. That other stuff is part of the blind spot.
Do you have some issue with the word?
We are getting super close to a legitimate usage of the word antidisestablishmentarianism
It's true that that theory would combine things, but it's just a theory, and I don't know how evidence based it is.
> 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.
Indeed, but humanity has managed to reduce "accidental deaths" as a whole by honing in on individual accident categories before - say, alcohol influence, combating that one by a multitude of means reduced car crashes, workplace injuries and domestic accidents.
Something similar might be possible for cancer as well. I think the solution already exists in nature, hidden within large animals, we "only" need to find out how precisely a 200 metric ton whale or a 10 ton elephant manages to beat statistic odds.
(Additionally, ever since COVID shone a spotlight on it, there is more and more evidence that lots of cancers are caused by viruses, most prominently herpes / genital cancer)
No one talked about a general cure for cancer here. What I meant is a general cure for the specific disease. Specifically, it's easier to cure a patient with Biliary Duct Cancer than to find a cure for Biliary Duct Cancer.
"Cancer isn’t one disease, it’s a catch-all term for a bunch of vaguely related ones"
Also that's a pretty common misconception, cancer is pretty well defined, abnormal cell growth. I agree that there will be no single cure, but it's like a viral infection, or a system intrusion. There may be many causes and cures will be different, but there's no disagreement over what is an isn't a cancer or a viral infection.
> Also that's a pretty common misconception, cancer is pretty well defined, abnormal cell growth
I don't think cancer biologists would subscribe to this simple definition (and it's not hard to find cases of 'abnormal cell growth' that do not ultimately constitute cancer). There have been, and continue to be, publications that pose the question of what it means for a patient to have cancer (cf https://www.cell.com/fulltext/S0092-8674(11)00127-9 )
Cancers quite clearly cause different diseases - it's even the case that cancerous cells can yield distinct clinical presentations simply based on whether they are primarily found in the blood or in solid organs.
I don't think anyone would disagree that 'viral infection' is also an unhelpful description. Viruses may transiently infect host cells and die out (the common cold, for example) or permanently become part of the host genome (consider the various herpesviridae).
The term "vaguely-related" is perhaps wrong, but the "it's not one disease" is clearly correct. Just like "viral infection" is not a single disease, going by your own example, but a series of completely different diseases that have one particular mechanism in common.
People are attracted to "I climbed a ladder, and it was safe" stories, which are usually presented without the context on the societal harms of ladder use in aggregate.
Man ain't nothing one disease. Look at COVID. Why did the vaccine fail. Not one disease. Population variation of the virus. blah blah. Renal failure - shades of grey, shades of causes. Heart failure - shades of grey, shades of failure. High blood pressure - how high? Why? Who says it's high?
You see? Your point is unremarkable in the face of all diseases.
The handwavey reddit tier explanation you're shooting for is that cancer is genetically unique in each person. Which really is a gross oversimplification, there are non-unique genetic components of that are common themes across many cancers- TP53, PIK3CA, BRCA, KRAS, MSH, etc etc.
So such an explanation is lame because if there's all these common genes than it seems curable - which it would be if that were the long and short of it. Reason it's hard to cure is half those genes I name jack up replication machinery so it makes errors all the time. So now our cancer is not a genetically unique cancer, it's billions of genetically unique cells in one body, always mutating. Now it's not drug developer versus cancer, it's drug developer vs Charles Darwin, evolution. And of course there is a solution for that. Immunotherapy, or as the link shows, immunostimulation. Because the immune system also uses evolution / artificial selection!
If you could increase the general health of the person. Like, a lot. That might work as a general cure.
Preventative measures are not cures. You can’t eat your veggies out of stage 2 cancer.
It's called Cancer, not X, Y and Z.
It's one disease -- just a very complex one.
https://en.wikipedia.org/wiki/List_of_cancer_types
It's actually not,
here are the names of cancers that start with P
Paraganglioma Pineal astrocytoma Pineocytoma Pineoblastoma Pituitary adenoma Pilocytic astrocytoma Primary central nervous system lymphoma Primitive neuroectodermal tumor
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.
We are getting somewhat closer with "Right-to-try" laws: https://en.wikipedia.org/wiki/Right-to-try_law
Jake Seliger (RIP) wrote about his frustrations with it also:
https://jakeseliger.com/2023/07/22/i-am-dying-of-squamous-ce...
https://jakeseliger.com/2023/08/02/if-youre-involved-in-drug...
Jake Seliger's problems weren't really "Right-to-try".
The first problem was finding the damn trial in the first place since nobody wants to share information as it might tell their competitors something.
And then he had to pass the prerequisites for the trial. The problem there was navigating the US health system that moves like a glacier and either couldn't get a test run fast enough or wouldn't take a test from somewhere else.
Finally, after all that, then you reached the "Right-to-try" level where there were different questions of whether to subject him to the treatment based upon whether the doctor thought it might or might not be effective.
And through it all, he and his wife understood that the odds were very, very bad.
To me, the counterargument to "Right-to-try" are the Alzheimer's drugs. The underlying Amyloid hypothesis appears to be broken and fraudulent and all the drugs based on it have failed miserably. And, yet, one got through FDA approval because the consumer push is so huge and everybody wants something--even if it doesn't work.
There is big money behind pushing the boundaries--be very careful about eroding them.
To me, the Alzheimer’s drug story is an argument for right to try laws.
If the drug is available to the desperate, then the push by the public to shortcut the process goes away and the process can be done correctly. Those who are desperate can try, with the understanding that it might not work. The process can continue unmodified because there isn’t a pressure to get the drug out to the public because it is available.
Except that the drug has negative side effects and does not work-not even with the most optimistic interpretations.
If you allow that, you're back to HCQ for Covid territory. Or all the autism "treatments".
The problem is that most people think of medical outcomes as having 2 results when there are 4.
The 2 everybody thinks about are "drug given->patient gets better" and "drug not given->patient gets worse". But there are two more cases.
"drug not given->patient gets better" is wonderful in the super-rare cases when it happens and is totally unproblematic.
The problem is that the case "drug given->patient gets worse" is common--doubly so for experimental treatments--exponentially so for experimental cancer treatments. And the problem is that it can be due to either the disease or the drug or both. This case is the one that you can't explain in a soundbite. And it's one of the big hurdles in drug discovery.
The vast majority of people simply will never get this. We know this. We watched it play out in real time--multiple times.
Sure, if you made everybody pass a Bayesian statistics exam before they could get their treatment, that would work. But then you'd be "gatekeeping a cure".
Stupidity is the norm, not the exception, and greedy, evil bastards are not unrare. Your rules have to, sadly, take that into account.
> "drug not given->patient gets better" is wonderful in the super-rare cases when it happens and is totally unproblematic.
It is not actually super rare. One might even say this is the most common case. I guess what you can say is that spontaneous remission is super rare to happen for “serious” diseases. But that is circular reasoning because we kinda define serious diseases by the fact that it is rare to just get better without treatment from them.
Why is this important? Because this is one of the main wrinkles with drug testing. If some people just get better on their own then you have to be very carefull with statistics and double blind protocols. Because if not you might confirm your belief in an innefective, or maybe even harmful treatment by random happenstance. Therefore i would say this case is also one of the big hurdles in drug discovery.
Otherwise i agree with the general gist of your comment.
I think this belief is how you end up with people who think you need some cocktail of OTC drugs every time you get a cold.
A child gets a run of the mill cold, parents give them all the OTC things, kid gets better and assumes it must have been because of the drugs. In reality, they didn't need any of it.
That doesn't sound like an argument against the right to try, that sounds like an argument for requiring specific, intentionally frightening language around informed consent. The thing is, probability is a bitch, and emotionally filtered probability is the devil. An experimental treatment for a terminal illness can be 99% likely to result in a quicker or more painful death, but is it really right to deny the 1% chance to someone who understands the statistical choice in front of them?
Another facet of this is: should insurance pay for it? Or should the patient bear the financial burden when they want to try a shake-oil cure? Especially in this case when the drug is now FDA approved?
> Except that the drug has negative side effects and does not work-not even with the most optimistic interpretations.
One of the difficult things about ethics (including medical ethics) is that everyone has slightly different opinions.
But in MY opinion, if someone's medical situation has an extremely high likelihood of extremely poor outcomes (terminal cancer and severe Alzheimer's both qualify), then I think it is perfectly acceptable to allow them to use a treatment which is well understood to have no useful effect and many harmful side effects.
I have an ethical problem with encouraging them to do this; I have an ethical problem with profiting from them doing this; but I think that prohibiting them from doing it (as we do today, mostly) is also wrong. EVEN IF the patient is "too stupid to understand it correctly".
> I think that prohibiting them from doing it (as we do today, mostly) is also wrong. EVEN IF the patient is "too stupid to understand it correctly".
There's a lot that can be said on this, but it's harder to defend that position if the decision has an effect on others. The obvious situation that arose during the pandemic is someone experimenting and then creating more work for an already overwhelmed hospital system. Then you have to ask about paying to clean up the mess - should it be health insurance, that is paid by everyone else? If you die, what are the effects on your family? How do you draw the line where "well they don't have much time left anyway" vs "they killed themselves experimenting with flu treatment"?
For a real case of a somewhat popular and harmful treatment https://en.wikipedia.org/wiki/High-dose_chemotherapy_and_bon...
> Clinical use of this treatment was driven by women with breast cancer and advocacy groups, such as ACT UP; they believed that the FDA treatment approval process was too slow.
https://en.wikipedia.org/wiki/Right_to_repair
I remember this being posted. It's a bit surreal to read now.
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
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.
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.
Would it be illegal today to give people sugar pills sell them energy healing?
Depends on how it's marketed. As long as they avoid making specific health claims (say "boost immune function" instead of "cures disease X") they can get away with it. If it's "homeopathic" they can even be sold on the same shelves as actual medicine, with similar looking labels.
Ish. You can't say that a pill or treatment cures cancer if there's no evidence to back that up. Of course in private I'm sure that's said all the time.
My concern with lowering the bar for advertising such services is it makes it easier for someone to jump in with "Our clinic is actively researching cancer treatments and offers free experimental drugs".
I could be wrong, but my understanding is that "free of charge" is already legal, and the FDA only regulates drugs that are sold and not ones that are given freely
I'm not sure how the law pays with free goods.
I know that a drug company can't skirt regulations around clinical trials simply by making participation free (in fact, clinical trials usually pay the subjects.)
I don't see the issue or point of limiting profitabilit, what am I missing?
Here's the scenario I have in mind.
John has an uncommon cancer X with no cure. John contacts Cancer R&D Corp. John pays 80% of his life savings to R&D corp for research into his specific cancer X and provides himself as a test subject in the meantime. R&D corp attempts to find a cure for the disease, if the mission fails and John dies, in the future if other patients with cancer X appear, they can take over from where they left. Payment can be split into an upfront half for research and bonus paid upon a successful cure (or year of quality life milestones) to give incentives for actual success. So as to avoid companies from benefitting from never finding a cure.
The issue is that fraudsters would like nothing more than to call themselves R&D and to sell BS to desperate people looking for a cure.
That already happens very frequently. For example, bleach enemas to cure autism [1]. Colloidal metals to cure cancer [2]. And a whole host of other cure-alls.
Now imagine you have a mechanism where they can claim to be legitimate research AND there is an incentive to bilk people out of 80% of their life savings.
Heck, even imagine what happens if legitimate for profit companies can use this route for revenue generation. If they have a route to sell drugs which has less regulation and liability, why would they ever release a drug through the full FDA process? And why, you might ask, is regulation needed for this sort of stuff? Well, think Vioxx.[3] Sure, maybe this cancer drug works but it also might give you a heart attack. Without getting it fully approved or researched drug manufacturers have no reason to actually look into downstream effects. They have every incentive to just keep it on the market (like they did with Vioxx) and ignore evidence of adverse results.
Taking profit out of the equation makes it so that the research isn't and can't be endless. It makes sure there isn't a perverse incentive to make lethal drugs that work good enough for some diseases. I'd love it if we could have a win win, but the free market loves to reward bad actors.
[1] https://www.nbcnews.com/tech/internet/moms-go-undercover-fig...
[2] https://www.healthline.com/health/colloidal-silver-cancer
[3] https://en.wikipedia.org/wiki/Rofecoxib
"The issue is that fraudsters would like nothing more than to call themselves R&D and to sell BS to desperate people looking for a cure."
So?
Because there's ilegitimate companies you should outlaw legitimate companies?
Should we ban banks and stock brokers because ponzi schemes exist? What makes you think there would be less ilegitimate companies, it's possible even that there would be more ilegitimate companies.
"Heck, even imagine what happens if legitimate for profit companies can use this route for revenue generation. If they have a route to sell drugs which has less regulation and liability, why would they ever release a drug through the full FDA process? And why, you might ask, is regulation needed for this sort of stuff?Without getting it fully approved or researched drug manufacturers have no reason to actually look into downstream effects. They have every incentive to just keep it on the market (like they did with Vioxx) and ignore evidence of adverse results."
I'm not an expert on the subject, but I do know that the subject of the article and what you are talking about are 2 distinct domains. One thing is developing a drug or treatment for a common disease. And another is treating a specific patient. Right? Two very distinct services/products with very different regulations. I do know at least from the import regulations my country has laxer requirements for infrequent diseases. Of course a treatment for diabetes can support stricter regulations than for Cancer of the Biliary Duct.
Additionally what I suggested wasn't even treatment, I proposed just Research & Development, this is already possible through donations.
> Because there's ilegitimate companies you should outlaw legitimate companies?
No, you should have regulations and enforcement to ensure that stop illegitimate businesses from operating. Those regulations might make it harder for legitimate businesses to operate but that's to ensure public health isn't sabotaged by bad actors.
> Should we ban banks and stock brokers because ponzi schemes exist?
No, we banned ponzi schemes through regulations. That's what I'm proposing.
> What makes you think there would be less ilegitimate companies, it's possible even that there would be more ilegitimate companies.
There's always going to be people looking for loopholes in the law to make a buck. That's why the law needs to be constantly updated and these loopholes closed. You'll never 100% close everything, but that doesn't mean you shouldn't be constantly looking for improvements.
> I'm not an expert on the subject
You should read into it. The fact is that, particularly with medicine, we have to be careful about the leeway we give to companies. You simply have to assume that anyone selling something is amoral. Without regulation, companies can and do run the calculus of "How much will these deaths cost us vs the money gained from selling the product".
Vioxx isn't an isolated example either. Look up "Dalkon Shield", a product that had about a 1% chance of causing sepsis which killed and crippled literally hunderds of thousands of women. A product that, after this was found out, after the lawsuits flew and it was removed from the market, was shipped to and sold in Africa for several years.
My point is, that whenever anyone starts talking about relaxing regulations and making it easier for a drug company to profit, we should be thinking about the above abuses. Because companies can and will abuse the system.
You may still say "so what" but you should be thinking about "So what if the treatment cures cancer, if it causes a stroke, heart attack, or premature death when other maybe less effective treatments may have extended life". Cancer isn't the only thing that kills people and there are fates worse than death that drugs can cause.
> Two very distinct services/products with very different regulations.
The discussion here is how do we make individual treatments like the one in the article more available. The points I'm raising is that any increase in availability needs regulations to ensure it's not abused. I've given specific examples where regulation/enforcement has been lax which has allowed grifters and drug companies to directly and knowingly harm the public.
"regulations might make it harder for legitimate businesses to operate"
We just have a very different view. I think regulations HELP businesses.
For example, a well meaning company wants to make a cure for AIDS, a good regulation would require a study of length and size proportional to the volume and lethality of the disease. If the study is small, the regulation may allow small trials, and its first batch of patients be itself a trial for bigger batches.
If there were no such regulations, the well-meaning company may have had a lot of success, but maybe they would have gone to market too fast and detected a side effect in a big trial instead of a small trial.
Conversely, a terrible company might either choose to comply with the trials, and genuinely pivot to legitimately seeking a cure. Or avoid regulation altogether.
Good regulation is not an equal cost imposed to both parties, and never the cost is higher to the good parties. Regulation is an incentive that when followed leads inevitably to the results desired.
"That's why the law needs to be constantly updated and these loopholes closed. You'll never 100% close everything, but that doesn't mean you shouldn't be constantly looking for improvements."
Also not at all how I view the law. The law is written once, what is updated is the case law, the court rulings. Only when there is a change in technology other foundational changes, or very biig learning cycles (50 years), do we make another attempt at the same problem. You don't update a law every 3 years patching for loopholes playing a game of catch me if you can.
To see the issue, replace "R&D Corp" with "Mystical Crystal LLC" or "Mr. Henry's Miraculous Snake Oil Elixir Ltd."
Fraudsters and scam artists are happy to rip off people trying to avoid death.
Or Steve Jobs. The problem isn't so much that the treatments don't work. It's that they're pursued exclusive of ones that do.
I responded to this in other posts, but this would be throwing the baby with the bath water. And it's especially bad as the good suffers more. Legitimate companies will follow the law, but the ilegitimate actors will just sell mystical crystal anyways.
I've never really understand this whole "laws are useless because criminals will break them" thing.
Conversely, if you ban actually charging for last-attempt experimental research services, then those desperate people will only be left to seek:
1- Honest researchers who can't charge too much. 2- Unscrupulous quacks who will take all your money regardless of law.
With the second option being much more common due to incentives. If however you allow research facilities to take donations/payments to fund research related to a specific disease, then you will increase the incentive for legitimate companies, even if the odds are still low or close to 0.
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.
I think you also need a caveat that failures must be recorded, and a specific treatment can only be used so many times without success. That will avoid providrrs who are self-deluded about the efficacy of their favourite drug/therapy.
Patients with incurable or hard to cure diseases are susceptibile to be exploited by companies or doctors that want to try unproven treatments on them. On the other hand, telling someone they are not allowed to do everything they can to save themselves is equally bad.
How can we collect useful data on experimental medicine outside of a controlled study?
Centres of disease control (in the US and elsewhere) track morbidity and mortality on a wide range of conditions, which is one standardised answer to your question. There are also (a small number of) independent or unorthodox researchers who pursue specific avenues. You'll of course find the frauds amongst these (e.g., Andrew Wakefield, who promulgated anti-vax theories and falsified research toward same), but there are also notable medical advances which have emerged in such contexts, such as J. Robin Warren and Barry Marshall's identification of Helicobacter pylori as the principle cause of stomach ulcers, rather than stress:
Jessica Tanenbaum, "Delayed Gratification: Why it Took Everybody So Long to Acknowledge that Bacteria Cause Ulcers" (2005)
<https://www.jyi.org/2005-february/2005/2/9/delayed-gratifica...>
The “might work” is doing a lot of heavy lifting in this sentence. How strong must the evidence be for the hypothesis of efficacy to be considered reasonable?
Why not leave that question to the person getting treated?
The person being treated, or their family, might change their mind after the treatment fails, and cry bloody murder. And get sympathy. So the only defense is to deny treatment. In hindsight, with the bad consequences fixed, they will claim they should have been prevented from getting the treatment and whoever did not prevent them is at fault.
Do you doubt there are people who refuse to accept the consequences of their own actions and seek to place blame anywhere else they can?
Or indeed some third party might do the claim with hindsight. Prosecutors or whatever. People can be irrational, in general.
Those all sound like legislative issues that could be fixed by the legislature enabling these kinds of experimental treatments in the first place.
The legislative institutions are not isolated from the people. The opposite in fact, in democracy they must respond to the will of the people. So if enough people are irrational and wish to assign blame somewhere else after they assumed a certain risk (and/or enough people support this even when not involved), there can be no legislative solution.
It would require legislative bodies to pass laws against the wishes of the people. Maybe in China :)
I find this comment somewhat disingenuous. People have been arguing about allowing more experimental end of life treatments for at least 40 years of my life. I grew up during the AIDS crisis and there were all kinds of quacks selling this or that to take easy money from desperate people. If what you say is true, then why hasn't it already happened? After all, isn't 40+ years long enough to argue about it?
Because decades of arguing in no way implies that "the truth" or correct policy will fall out of politics. Abortion and marijuana legalization are two contemporary (and much more prominent) examples.
Why not ask the scientist treating themself?
Are companies similarly unbound from advertising anything they want to vulnerable populations? What do those rules look like?
"Bleach cures Covid".
Now what? The irrational FAR outnumber the irrational.
It sounds like this might be a bit like off-label medicine though. It would need to start with a doctor. Maybe any plan needs an independent sign off from another doctor who is qualified enough.
How about if the government doesn't tell us what to do with our bodies to start with?
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?
Plus the worst case seems to have been a minor fever.
> “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.
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.jaib...
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!
Also the Japanese Unit 731
https://en.wikipedia.org/wiki/Unit_731
The US government granted many of the "scientists" immunity in exchange for giving over all the data they had learned and helped even cover it up lol
The Japanese did some real fucked up shit in these experiments like chopping off limbs and reattaching them to the opposite side and slicing open pregnant women.
They also flew low flying planes over Chinese cities and dropped Plague-infected fleas which killed tens of thousands of people.
In total, they killed hundreds of thousands of people.
TIL the USA not only let the people they captured go free in exchange for the information they had on Unit 731, they continued experiments until 1956, well after the war, though this time with Japanese victims.
IIRC even Germany thought unit 731 was bonkers
better to let them die in vain and lose irreplicable, un-re-execable data?
I'm not confused about why the field exists. And I agree that something needed to be done to prevent repeats of those horrors. But the current state of the field is (in my opinion) unacceptable.
When something bad happens, the person it happened to or their family will often be (understandably) irrational, and make the maximum amount of fuss and ask for the maximum damages and penalties. Even if the risk was reasonable and ethical. So naturally researchers, medics, take extra precautions. Being reasonably ethical might not be enough protection.
One thing that might be done (in my clueless opinion) is accept that sometimes shit happens and preventing the victim from getting exaggerated revenge or damages or whatever.
I'm sure at least once it happened that people who actively requested experimental treatments turned around and sued or called for prosecution after their experimental treatment took a bad turn. Of course researchers will be reluctant to provide experimental treatments.
And Didier Raoulot https://www.lepoint.fr/sante/didier-raoult-30-years-of-unreg...
Do compassionate people really need a study to know those things are abhorrent?
If it’s not in a peer-reviewed study, how do you know it’s true?
/s
A hospital I worked at would only provide dialysis to immigrants if they were in florid kidney failure. So they’d come to the ER dying, get dialysis once, then get released with no follow-up. They’d have to wait til they were back in kidney failure to come back, no preventative care was funded by the fed so they just stuck to that. There is no ethics in the American medical system. Anything claiming to represent it is a scam.
It's the law that US hospitals have to provide care regardless of ability to pay in an emergency but not preventative care. Medicaid, which would cover dialysis for most poor people doesn't cover unauthorized immigrants. Your hospital is functioning as the law directs it to. I was going to put "as the law intends" but our system is very much a Frankenstein quilt with many effects that nobody really intends. But politicians know that people would be angry if they heard an immigrant was left outside a hospital to die of kidney failure and they know people would be angry about providing non-emergency medicine for free and they know that not many people will notice we collectively spend more money this way and most of the people who do notice won't see how it makes everybody's medical care more expensive rather than just hurting hopsitcal owners and unauthorized immigrants.
None of it is ethical, law or not.
Plus it is massively more expensive to let people continuously loop back into kidney failure.
More expensive and unethical.
Well, given recent events... maybe some people vote for "no free lunch out of my tax money", even though they themselves may end up needing the "free lunch" (the federal funded dialisys). Are you sure it's not ethical to deny it to them in this situation?
On a large enough scale, we decide the rules that apply amongst us. How could it be unethical? Who's being unfair to us, martians? God?
We're being unfair to each other... seems fair that we get unfair treatment.
Emergent care instead of regular dialysis is vastly more expensive. All of this outrage over no free lunch is more expensive. Idiots.
They should see the Dialysis King!
https://www.youtube.com/watch?v=Ep-f7uBd8Gc
That is the standard for American emergency departments, and they do that because EMTALA requires them to treat anyone enough to keep them from dying, if possible - but that's all.
I know, but it is not at all ethical, practical, prudent, or fiscally responsible.
> cost/benefit calculation here is way over-cautious ... theoretically induced harm... fuzzy concerns about population-level harms
It would be nice to at least have proper investigation of last alleged lab leak. When you talk about "fuzzy concerns" in light of last 4 years, I think you can not be serious.
There are cases where ultra high security virus lab sold disposed corpses on food market!!!
The only people who could do that investigation would be China, and they seem disinclined. Or possibly they already have done the investigation and aren't telling the rest of the world their results.
> overrule individuals’ rights to seek treatments for their fatal diagnoses.
That was an objectively good things about Trump’s first term, pushing for and signing Right To Try.
Medical ethics is a bit tricky. It's like the trolley problem on steroids.
I mean pulling the lever so only 1 person has to die instead of 5 seems simple until suddenly you're harvesting a healthy person's organs to save 5 others.
Heck we've seen it in action in covid-19 research. How much more useful data could we have had if we infected people deliberately? (or at least didn't just wait for them to get infected by chance) Sure some tens of people, maybe hundreds could have died as a result, but what is hundreds for a disease that kills millions? Besides, getting infected isn't even a death sentence, we've sent plenty of soldiers towards way worse odds.
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.
There are a couple OVTs that are approved by the FDA and it's a rather active area of research. One of many in the recent explosion of biological cancer treatments (immunitherapies/cell therapies, etc etc). With any cancer treatment the exact same procedure will struggle to generalize well across cancer types and you have to regulate for safety and efficacy rather strongly. Especially when the treatment is lab grown measles or herpes virus strains that are genetically engineered.
wikipedia.org/wiki/Oncolytic_virus
> With any cancer treatment the exact same procedure will struggle to generalize well across cancer types
As someone with family members living with cancer, modern genetic sequencing has been the biggest surprise.
Not that we could sequence tumors, but that we could do so at scale and classify therapies by effectiveness against specific mutations (in general, even ignoring targeted therapies).
Widespread cancer sequencing seems like the missing link to promote better outcomes, particularly in metastatic cases.
It's already an importany part of diagnostics and treatment! A lot of therapies are approved not just for specific cancers but for specific cancers with specific mutations. As with everything cancer it turned out to be more complicated than expected (not surprising given that it's essentially an outcome from chaotic uncontrolled genetic mutation and evolution) but sequencing progressing at like an order of magnitude faster than Moore's law and better understanding of all the -omics is making a dent
Yes, when a family member was fighting metastatic pancreatic cancer, their doctor had a tumor biopsied and sequenced to see if they could try one of the new immunotherapies. Sadly no, and I learned that only a small percentage of hard cancers are yet treatable that way (which still helps a significant total number of people though).
Well, there are two broadly different ways in which sequencing can help.
1. "Targeted therapies" that directly target unique surface features that specific mutations create. E.g. BRAF
2. Sorting most effective treatment by cancer type, where cancers driven by different mutations in different types of cells respond to specific treatments better or worse. Especially important for metastatic where you may have a pancreatic cancer mutation tumor in your lungs, etc.
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.
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/
* As the article points out, there is one approved OVT therapy.
It’s even older than that. Much older. Wikipedia “Coley’s Toxins”.
wouldn't that almost certainly be a crime if in the US?
In the US? No you can do pretty much whatever you want here.
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
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.
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.
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.
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"?
Can you tell us what the 'cures' were, to warn others?
This is the epitome of self-reliance and kickassery. Respect.
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.
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.
"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.
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.
https://www.theguardian.com/books/2024/nov/03/brainstorm-ric...
I believe this is the HN discussion of their publication: https://news.ycombinator.com/item?id=41467503
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.
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.
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?
Let her do what she wants to herself. So many words spent waffling on something so simple
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.
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!
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/
> 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.
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.
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.
[1] https://en.wikipedia.org/wiki/Roger_Altounyan [2] https://en.wikipedia.org/wiki/Cromoglicic_acid
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.
Self experimentation is not ethically fraught. Informed consent is possibly only achieved in this instance.
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.
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.
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.
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?
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.
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_medici...
Not definitive ≠ useless
> Is it considered unethical to do medical experiments on yourself without any oversight like you would find in a typical human subject trial?
Note there are different contexts at play here. When someone says "ethics" in a scientific context, it may encompass scientific integrity, avoidance of questionable research practices, reproducibility, etc., as well as medical and moral ethics. The speaker may not even be fully aware of these distinctions, since the subject is often taught with a rule-based perspective.
Experimentation on oneself is often _scientifically_ unethical (i.e., when done with the intent to make a scientific discovery) because:
1. The result is often too contaminated by experimental integrity issues to have scientific value. As another comment in this thread notes: "sample size of 1, confirmation bias, amped-up placebo effect, lack of oversight, conflict of interest when the patient is the investigator". Lack of oversight means no one is checking the validity of your work, it's not a permission thing. Every issue that is blamed for the so-called reproducibility crisis is worse.
2. Due to publication pressure, abandoning the cultural prohibition against self-experimentation amounts to pressuring everyone to self-experiment to grow their CV by a few quick N = 1 studies, or do something risky when their career flags. Obviously, oversight to ensure that self-experimentation proceeds only in cases of terminal disease mitigates this concern.
In practice, journal editors currently provide oversight addressing point #2, which is why work like what we're discussing here still gets published. See also Karen Wetterhahn's valuable documentation of her (accidental) dimethylmercury poisoning (https://en.wikipedia.org/wiki/Karen_Wetterhahn).
Experimentation on oneself in an attempt to cure your own illness by any means at your disposal, provided you do not harm others, is not _morally_ unethical IMO. It just rarely has a scientific role.
You can do whatever you want to yourself. You can't hurt/encourage others, and the data may be no good, but certainly you have informed consent if you're the only subject
That's not actually true though is it, suicide is illegal in many jurisdictions. Not just self- euthanisation towards the end of life anyway (which is more controversial/media-discussed) but any form.
The context of that comment is a parent comment asking about medical self experimentation. You're also not allowed to administer scheduled substances to yourself in many jurisdictions and plenty of other things like that but that's not what I was replying to.
You actually are allow to administer all sorts of scheduled substances to yourself. You aren't allowed to posses those substances.
The laws that do target someone for being in an altered mental state are mostly about being that way in public.
You’re confusing legality with ethics, which are not the same thing.
I most certainly am not, but I wasn't aware that it was repealed in the UK (the legal system I'm most familiar with): https://en.m.wikipedia.org/wiki/Suicide_Act_1961
What could possibly be the purpose of such a law?
To give the authorities a reason to intervene. Which in turn is justified by most people who fail to commit suicide being happy, in retrospect, that they failed.
There's probably also a crowd who want it to be illegal because they view suicide as a sin, though personally I think that justification for a law seems like a violation of religious freedoms.
Can "the authorities" intervene prior to a crime they believe is going to be committed? The supreme court has roundly rejected prior restraint. [1]
[1]: https://youtu.be/pn-kxUEySy0?t=54
> Which in turn is justified by most people who fail to commit suicide being happy, in retrospect, that they failed.
If true, that sounds like survivorship bias (literally). Those who aren't happy about the failure will just try again and won't be counted in the statistics.
Dead people don’t pay taxes
/s
In which jurisdictions the suicide itself (not assistance or encouraging) is illegal? I can only think of some deeply religious societies.
It was illegal in India till 2017.
> You can do whatever you want to yourself.
No you can't. Maybe in your country.
For ex, it's suicide is illegal where I live. Yeah.
Where do you live?
> you can do whatever you want to yourself.
Uh, women would like a word.
The argument against abortion is that the fetus is a separate person, and thus is not something you do "to yourself."
Uh yeah I don’t think anyone needs to have “the argument” explained. I have yet to see an explanation for why it deserves any merit though.
I'm pro-choice, but I think that it's not an unreasonable stance if you believe that the fetus is an alive human being with intrinsic worth, or a soul. (Souls aren't real, but >75% of Americans believe in them.)
None of that is a refutation of what I said though, since I reject the notion that belief in the existence of the soul can be used as justification for stripping a person of their bodily autonomy.
If we found out cancer cells had souls tomorrow, exactly no one would be screaming “but their souls!” at folks walking into a cancer clinic.
"since I reject the notion ..."
Well, that's a you problem. The rest of us make decisions based on what we believe, not on what you believe.
you put an adults bodily autonomy over a innocent babies life.
I would hope most people have enough self awareness to not compare a foreign hostile disease that does nothing but kill its host to a human life.
It is highly discouraged for good reason. Experimental treatment is generally dangerous and humans are often overconfident.
That said, there are stories like Helicobacter pylori that have moved humanity forward.
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.”
I don't think it's a good ground to rejected observational data. If you want the published data to be less biased you should introduce as little arbitrary (not connected to the quality of data itself) barriers as possible.
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.
> This is just a statement by someone that is desperately looking for a negative point
No it isn't.
This is an expert explaining why journals have ethical concerns publishing the paper and why those concerns matter.
>> “I think it ultimately does fall within the line of being ethical, but it isn’t a slam-dunk case,” says Sherkow, adding that he would have liked to see a commentary fleshing out the ethics perspective, published alongside the case report.
Why do you care what you categorize this incident?
How will it calling ethical or unethical makes any difference to you biologically?
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.
Why is this not accelerated for every single cancer patient with a tumor?
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.
Decades? In your comment and in your thinking lies everything that is wrong with this world.
It does scale because it eliminates dozens of redundant oncologist visits.
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
in short, money and ethics
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
Real ethics isn't what you think it is. Real ethics is in getting the treatment asap to everyone that it can save.
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.
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.
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.
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.
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.
Have we ever tried only injecting adjuvants used in vaccines into tumors?
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.
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.
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.
(We detached this subthread from https://news.ycombinator.com/item?id=42096116. Not that what you posted was bad, it just led to an offtopic tangent.)
> 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.
Uber offers higher rates when moving into an area, sometimes the point of making a loss per ride. Once an area is established, they cut rates to drivers. Obviously, the drivers make the rational decision you’ve outlined above; but the taxi companies don’t come back.
Again that's not how it works. It's a two-sided marketplace.
> the drivers make the rational decision you’ve outlined above
Okay... then the rates for drivers will automatically go up again since there's there'll be a mismatch between drivers & riders.
Not only that, how would the proposed alternative make any sense for Uber? They spend a lot of money to undercut the taxi companies, only to abandon the market as soon as they have no competition?
The predatory practice would be to raise prices at that point, not to abandon the market, but they can't even do that very much because then they'd be undercut by Lyft or the taxi companies actually would come back.
Uber burned investor money in major markets for years operating at a loss to drive smaller operations out of business, only to become at least as expensive as their former competitors but as the only game in town.
> how can they be underpaying people (i.e. paying them less than competing employers) and yet people still choose to do it?
"paying them less than competing employers" being synonymous with "underpaying" is probably not a great assumption, although I'm sure it's the definition an MBA would use.
Most regular people are choosing the least-worst option in terms of employer. That doesn't mean that the least worst option is necessarily good, or paying fairly on an absolute scale. It could just be the job that means workers can handle one unexpected large bill before going bankrupt instead of not being able to handle any at all working for the next-worst option.
In other words, there's an imbalance of power between employers and the "regular person" workforce. The workers technically have a choice of where to work, but in many cases, none of the choices are good.
Right, but the employer they choose is presumably the one offering the best deal in the world from their point of view. Wouldn't it make more sense to be mad at every other employer for not proposing better pay, than the one that's offering the best pay for that worker?
> people are choosing the least-worst option in terms of employer
Doesn't that mean people are choosing the best employer that wants their skill set?
Yes, just like 6yo chimney sweeps were and children in sweatshops today are.
There are two ways to get rid of child labor.
One is to ban it. This has some obvious drawbacks in weak economies, e.g. if the kid's choices are to work or to starve and then you ban them from working, they starve. It also interferes with kids being entrepreneurial. What's wrong with a kid mowing some lawns after school for spending money?
The other option is to create an economy strong enough that parents have no need to put their children to work instead of sending them to school, and then they don't.
What developed countries often do is to do the second one, then the first one, because that has some evolutionary fitness in politics. The more severe drawback of the first method is mitigated when the second one is in place, because then you're banning something people mostly wouldn't be doing anyway. Meanwhile politicians then get to claim credit for "solving the problem" by passing the ban, after it was already solved by something else.
These alternatives generalize to most types of labor restrictions (e.g. minimum wage). The reason only ~1% of people make minimum wage is that minimum wage is dumb so the rate is set low enough to minimize the damage done by the law, while still giving politicians something to claim credit for passing. What you actually want to do is the following: Use transfer payments (e.g. EITC/UBI) to help people making low wages, foster a stronger economy where people get paid more (e.g. make it easier to start a business), and lower the cost of living by preventing market consolidation and regulatory capture (e.g. enforce antitrust and don't allow restrictive zoning to constrain the housing supply).
Then you don't have to ban people from accepting less than a given amount of money because they would be under no pressure to do that to begin with.
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.
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.
Don’t distract this thread with a shit tier “Uber sux” analysis.
Cabs were completely unusable in most cities before Uber unless you were staying at a hotel where they hung out. They also paid their drivers as poorly as Uber does and the benefit just went to the owner instead of Uber. It’s not like cabbies were specially trained.
Taxis were more expensive because they were so fucking shitty that the 5 fares a day a car would get had to cover the expenses.
>leaving the town with zero practical transport options.
Again, taxis were not practical before. It was more reliable to beg strangers at a bar for a ride home than to get a cab to show up in the 90s.
I'm not sure where you got the idea my post was claiming taxis were superior in any way, I explicitly said Uber was better. Taxis weren't practical but they at least they existed. I have lived in cities that used to have taxis which were annoying and unreliable, but after Uber came and left there was literally no way at all to get from point A to point B without getting a ride from a friend.
Regardless I will admit I misread the issue stated in the article a bit and addressed that more here: https://news.ycombinator.com/item?id=42097052
Did uber leave or did your city scare them off
In Texas most times I called a cab I expected them to never come. Only exception was scheduled airport rides a day or more in advance.
Yep, and that scheduled ride costs $100
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.
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?
Any crime that ends in "without a license" is a crime I care very little about.
How about "flying a commercial airliner without a license" ?
No one will allow you to fly a commercial airliner without a license (without the law needing to be involved).
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."
>> 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.
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.
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.”
Yeah, imagine all those million dollar cancer drugs that dont really work, when you could just inject traditional vaccines to tumor
> 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.
I mean it’s kind of the opposite of a randomized double blind study, so from a public health stand point it’s an anecdote, a single datapoint with any negative results presumably unreported.
With opinions like yours, the US would never have developed mRNA vaccines.