[HN Gopher] Scientist treated her own cancer with viruses she gr...
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Scientist treated her own cancer with viruses she grew in the lab
Author : dataminer
Score : 345 points
Date : 2024-11-09 14:23 UTC (8 hours ago)
(HTM) web link (www.nature.com)
(TXT) w3m dump (www.nature.com)
| evanjrowley wrote:
| My biology teacher knew a guy who did this to cure his wife's
| cancer, and that was back in 2008. How bizarre that this hasn't
| become a standard treatment after all this time.
| goda90 wrote:
| It's likely that sometimes it goes poorly in bigger sample
| sizes. Maybe the viruses have a chance of causing a cytokine
| storm which can kill the patient.
| gpm wrote:
| 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.
| sidewndr46 wrote:
| wouldn't that almost certainly be a crime if in the US?
| vikramkr wrote:
| In the US? No you can do pretty much whatever you want here.
| sidewndr46 wrote:
| 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
| hello_computer wrote:
| It's even older than that. Much older. Wikipedia "Coley's
| Toxins".
| vikramkr wrote:
| 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
| ethbr1 wrote:
| > _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.
| vikramkr wrote:
| 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
| snowwrestler wrote:
| 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).
| irrational wrote:
| I'm sure this has been written on extensively, but I'm not aware
| of the conclusions. Is it considered unethical to do medical
| experiments on yourself without any oversight like you would find
| in a typical human subject trial?
| odyssey7 wrote:
| It is considered not definitive, given the sample size of 1,
| confirmation bias, amped-up placebo effect, lack of oversight,
| conflict of interest when the patient is the investigator...
| but you're usually allowed to do what you want with your own
| body.
| card_zero wrote:
| 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...
| odyssey7 wrote:
| Not definitive [?] useless
| zbyforgotp wrote:
| From the article:
|
| ,,The problem is not that Halassy used self-experimentation as
| such, but that publishing her results could encourage others to
| reject conventional treatment and try something similar, says
| Sherkow."
| ta988 wrote:
| 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.
| shkkmo wrote:
| > 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.
| alexey-salmin wrote:
| 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.
| vikramkr wrote:
| 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
| OJFord wrote:
| 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.
| recursive wrote:
| What could possibly be the purpose of such a law?
| gpm wrote:
| 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.
| tredre3 wrote:
| > 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.
| maronato wrote:
| Dead people don't pay taxes
|
| /s
| vikramkr wrote:
| 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.
| cogman10 wrote:
| 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.
| sonotathrowaway wrote:
| You're confusing legality with ethics, which are not the
| same thing.
| OJFord wrote:
| 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
| alexey-salmin wrote:
| In which jurisdictions the suicide itself (not assistance
| or encouraging) is illegal? I can only think of some deeply
| religious societies.
| unmole wrote:
| It was illegal in India till 2017.
| TheSkyHasEyes wrote:
| > 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.
| alexey-salmin wrote:
| Where do you live?
| hoorible wrote:
| > you can do whatever you want to yourself.
|
| Uh, women would like a word.
| fwip wrote:
| The argument against abortion is that the fetus is a
| separate person, and thus is not something you do "to
| yourself."
| hoorible wrote:
| 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.
| ISL wrote:
| 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.
| hshshshshsh wrote:
| Why do you care what you categorize this incident?
|
| How will it calling ethical or unethical makes any difference
| to you biologically?
| jpeloquin wrote:
| > 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.
| NotGMan wrote:
| >> In choosing to self-experiment, Halassy joins a long line of
| scientists who have participated in this under-the-radar,
| stigmatized and ethically fraught practice. "It took a brave
| editor to publish the report," says Halassy.
|
| Sad state of science that real results cannot be published
| because it goes against the current dogma.
| zacharycohn wrote:
| Rather than turn this into some weird culture war thing, I
| suggest you finish reading the article.
|
| That is, in no way, why it had difficulty being published.
| eyphka wrote:
| I would encourage reading about Jim Allison (the nobel prize
| winner in medicine for immunotherapy) and his difficulty
| having his research acknowledged / getting funding as an
| immunologist working in cancer research.
|
| Wired magazine did a piece on him detailing how funding for
| this type of research was largely stonewalled because it
| ignored status quo ideas on cancer treatment.
|
| My understanding is that traditionally ovt research was
| nearly impossible to get funding for but has begun to become
| easier as the status quo research and researchers from the
| 2000s have been replaced.
|
| "A new scientific truth does not triumph by convincing its
| opponents and making them see the light, but rather because
| its opponents die, and a new generation grows up that is
| familiar with it."
| puskavi wrote:
| Yeah, imagine all those million dollar cancer drugs that
| dont really work, when you could just inject traditional
| vaccines to tumor
| ethbr1 wrote:
| > _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.
| JackFr wrote:
| 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.
| OutOfHere wrote:
| Why is this not accelerated for every single cancer patient with
| a tumor?
| permanent wrote:
| in short, money and ethics
| vikramkr wrote:
| 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
| vikramkr wrote:
| 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
| jeroenhd wrote:
| Scientists are working on it. They're not done turning this
| approach into a generic, off the shelf treatment, though. As
| the article states, this isn't necessarily new technology.
|
| Having access to a lab and being an expert in the subset of
| virilogy used as part of the treatment definitely made it
| easier for this specific scientist to get her hands on this
| treatment. For someone else to get the same, they'd need to
| hire scientists dedicated to curing them, and that just doesn't
| scale to the amount of cancer patients in any normal hospital.
| Even then it didn't entirely cure her; the tumors were reduced
| in size but normal cancer treatment took care of the rest.
|
| Give it a few years, maybe decades. A lot of research is being
| done in this area of medicine and I can't imagine such
| biotechnology not becoming more widespread in the future.
| ziofill wrote:
| This is the epitome of self-reliance and kickassery. Respect.
| TZubiri wrote:
| Getting year 1 or 2 of medicine in, in addition to providing
| good general knowledge, would be a good insurance bet, if you
| ever, or a loved one has an uncurable disease, you can spend
| your life trying to cure it, and you have 1 or 2 years of
| advantage.
|
| Pretty sure that studying a career with such a specific
| objective in mind will have a much more useful effect in
| hyperspecialized branches (so not Primary Care) than studying
| generally out of school and only picking your branch a couple
| of months before it is required. You absorb the general
| knowledge with in the context of your specialization.
| GuB-42 wrote:
| Isn't year 1 or 2 of medicine just about knowing general
| facts about the body? Like the names of muscle and bones.
| Actually treating diseases coming much later, and practical
| knowledge is mostly learned as an intern.
|
| All that to say that doing 1 year of med-school may not be
| that useful unless you intend to do 10 more and become an
| actual doctor. Maybe nursing would be a better bet: shorter
| studies, and more practical.
| TZubiri wrote:
| "Like the names of muscle and bones"
|
| Yeah, and veins and bodies, a lot of them.
|
| But that's just 1 subject, anatomy. Pretty sure there's
| other useful subjects. And there's also the benefits not
| from the actual knowledge gained, but by the ability to
| learn higher order subjects, since they may have
| dependencies, you can probably orient learning towards the
| parts of the body affected.
|
| The nurse idea is pretty good. Same with imaging
| technician. I'd venture a guess that there's a lot of year
| 1 and year 2 subjects that would be equivalent.
| siliconc0w wrote:
| The one silver lining of having such a terrible diagnosis should
| be that you are immediately unbound from normal FDA requirements
| and are able and try anything in the pipeline that might work.
| rfrey wrote:
| With the caveat that they can only be charged a nominal fee,
| say the actual production cost of the drug. It would be good to
| avoid fraudsters stripping desperate people if all their assets
| danielmarkbruce wrote:
| This is an hilariously straightforward and brilliant idea.
| It's no holds barred, but the goal has got to be a real,
| approved drug in the future. Not profits right now.
| cogman10 wrote:
| I'd probably go further and say it must be free of charge.
|
| The problem with a nominal fee is fraudsters can be really
| clever at finding ways to bump up production costs.
|
| You might give the company doing the research relaxed
| liability, but even then you'd want to be careful. After all,
| you wouldn't want a coal mining operation conducting
| "research on lung cancer treatment" by sending in miners
| without PPE.
|
| If this is a legitimate research into curing cancer then
| eating the cost to treat test subjects is the least a company
| could do. The results are what's can be worth a lot of money.
| cogman10 wrote:
| 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.
| ToValueFunfetti wrote:
| Would it be illegal today to give people sugar pills sell
| them energy healing?
| cogman10 wrote:
| 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".
| IX-103 wrote:
| 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.
| TZubiri wrote:
| 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.
| fwip wrote:
| 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.
| JumpCrisscross wrote:
| 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.
| TZubiri wrote:
| 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.
| cogman10 wrote:
| 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
| TZubiri wrote:
| "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.
| cogman10 wrote:
| > 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.
| ChadNauseam wrote:
| 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
| cogman10 wrote:
| 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.)
| n4r9 wrote:
| 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.
| TZubiri wrote:
| 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.
| y-c-o-m-b wrote:
| 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...
| directevolve wrote:
| https://en.wikipedia.org/wiki/Right_to_repair
| pfisherman wrote:
| 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?
| anamexis wrote:
| Why not leave that question to the person getting treated?
| lucianbr wrote:
| 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.
| anamexis wrote:
| Those all sound like legislative issues that could be
| fixed by the legislature enabling these kinds of
| experimental treatments in the first place.
| chocolateteeth wrote:
| Why not ask the scientist treating themself?
| syndicatedjelly wrote:
| Are companies similarly unbound from advertising anything they
| want to vulnerable populations? What do those rules look like?
| redleader55 wrote:
| 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.
| AtlasBarfed wrote:
| It's my opinion that this shouldn't be a gee whiz story.
|
| We've had technology/ science for this for a while, but the
| medical capitalism establishment doesn't want it. Of course
| because it values labor too much.
|
| They want drugs. Drugs are a monopoly, drugs are MASSIVE profit
| margins, drugs are simple. And drugs are the means that the FDA
| knows how to approve treatments.
|
| This? It would take armies of skilled labor techs. It would also
| probably have to be offshore to avoid the US legal system.
|
| But in my opinion this is the path to "the cure" for cancer.
| hello_computer wrote:
| 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.
| rollulus wrote:
| I believe this is the HN discussion of their publication:
| https://news.ycombinator.com/item?id=41467503
| wslh wrote:
| The main point of the Nature article is, frankly, stupid. Imagine
| if a close friend or family member (brother/sister, child,
| mother, dather, etc) passed away when a cure was within reach,
| and your oncologist either lacked the insight or the ethical
| commitment to tell you.
|
| In a conversation like this, I'd want to tag people who've lost
| loved ones to highlight the importance of 'skin in the game.'
| This issue isn't abstract for those who've experienced loss
| firsthand.
| sonotathrowaway wrote:
| It was very odd reading an article where people were debating
| the ethics of a woman saving her own life, as if it was
| potentially a shameful act.
| inglor_cz wrote:
| 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...
| TZubiri wrote:
| Absolutely metal and the person I would aspire to be.
|
| I can't imagine a higher motivation to study and find a cure than
| to save yourself, with the possible exception of saving a loved
| one.
|
| As other have mentioned, finding a cure for a specific case is
| easier and has less regulations than finding a general cure.
| stouset wrote:
| A "general cure" for cancer is a pretty tall order. Cancer
| isn't one disease, it's a catch-all term for a bunch of vaguely
| related ones.
|
| Maybe this is a bit of a stretch but it's a bit like trying to
| find a way to end deaths from "accidents". Drowning, falling
| off a ladder, and a car crash are all a type of accident but
| it's really hard to find a thread tying them all together to
| deal with it generally.
| swayvil wrote:
| If you could increase the general health of the person. Like,
| a lot. That might work as a general cure.
| eptcyka wrote:
| Preventative measures are not cures. You can't eat your
| veggies out of stage 2 cancer.
| zkelvin wrote:
| Every day, something like 100 cells in your body become
| cancerous, but your immune system shoots them down before
| they can cause any harm. This is effectively a general
| prophylactic for cancer, so it's not unreasonable to think
| that we could discover a general cure for cancer (and that
| something immunotherapy is a promising candidate).
| Amarok wrote:
| 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.
| TZubiri wrote:
| 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.
| Narhem wrote:
| The cure for cancer is really simple.
|
| Even easier to make it preventable like diabetes but main
| stream doctor have to go through regulatory bodies.
|
| Funny reminds me working at large companies who explicitly
| don't hire doctors anymore because of the associated
| regulations that come with them.
| abeppu wrote:
| So, if the ethical problem is not attempting self-treatment, but
| that publishing about self-treatment will lead others to make
| potentially dangerous choices ... then isn't the publishing
| process, and its selection bias for positive results really the
| problematic part? If we never hear about people who attempt self-
| treatment which then _doesn 't_ work, and we occasionally hear
| about people who were successful, and there's no larger
| systematic study, then people will get an unrealistic view of the
| chances of success.
| tonetegeatinst wrote:
| I mean this would also imply that researchers have an incentive
| to publish. The incentive to publish and see results that are
| "good" and "potential treatments" for a disease mean any
| funding or research grant is seeing a financial motivation to
| conduct research, and because good outcomes are seen favorably
| by investors that creates bias and conflict.
| theptip wrote:
| > "I think it ultimately does fall within the line of being
| ethical, but it isn't a slam-dunk case"
|
| I concede that I haven't thought as deeply about this as
| ethicists, but I strongly suspect that the cost/benefit
| calculation here is way over-cautious if you think the
| theoretical induced harm is remotely close to the benefits of
| publishing.
|
| The history of science is already full of self-experimenters, so
| at the margin publishing is unlikely to move the needle.
|
| Furthermore, patients with cancer diagnoses are already extremely
| motivated to try whatever experimental treatments the FDA will
| permit; self-experimentation is already supply-constrained (of
| experiment opportunities) and there is excess demand. Again fuzzy
| concerns about population-level harms overrule individuals'
| rights to seek treatments for their fatal diagnoses.
| MostlyStable wrote:
| 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...
| wizzwizz4 wrote:
| 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!
| edm0nd wrote:
| 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.
| johnchristopher wrote:
| And Didier Raoulot https://www.lepoint.fr/sante/didier-
| raoult-30-years-of-unreg...
| kingkawn wrote:
| 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.
| lucianbr wrote:
| 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.
| sitkack wrote:
| They should see the Dialysis King!
|
| https://www.youtube.com/watch?v=Ep-f7uBd8Gc
| lazyasciiart wrote:
| 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.
| MostlyStable wrote:
| 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.
| lucianbr wrote:
| 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.
| influx wrote:
| Do compassionate people really need a study to know those
| things are abhorrent?
| rgrieselhuber wrote:
| If it's not in a peer-reviewed study, how do you know
| it's true?
|
| /s
| xelamonster wrote:
| I think I agree with you in this case, but I'm not so sure
| about a lot of the examples given in that linked article.
|
| BHH Labs: pretty obvious to me it's ethically wrong to find
| the most desperate people around and pay them less than
| minimum wage to staff your event...
|
| Uber: yes there was a need here, yes the experience offered
| by traditional taxis is awful and their service is strictly
| better where available, that really is not related to the
| ethical concerns I have with them. They're cheaper because
| they underpay drivers, and quite often they'll come into an
| area and drive out all the taxis then all but disappear
| themselves, leaving the town with zero practical transport
| options.
| some_random wrote:
| I actually agree with you on BHH Labs but for a completely
| different reason. We have minimum wage laws for a reason,
| and by working for less than that they were undercutting
| other people's labor. Without that externality I don't
| really see an issue with it.
|
| Underpaying drivers is not part of the Uber discussion here
| whatsoever, they're specifically talking about raising
| prices for inclement weather to incentivize more drivers to
| accommodate more passengers. If they're paid $10 vs $11 an
| hour or $100 vs $110 an hour is irrelevant for discussing
| the ethics in this case.
| xelamonster wrote:
| I'm a bit unclear what you're trying to say re BHH or if
| that actually is a different reason. Totally fair point
| on Uber though, I didn't read that one closely enough,
| but I'll still argue that's unethical for a more relevant
| reason: surge pricing reinforces inequality by blocking
| less wealthy people from access to services while those
| who can afford it are unaffected. The distribution of who
| is able to use the service under heavy demand is
| massively skewed towards the class of people that most
| likely would be just fine without it while the ones most
| heavily impacted by a missed appointment or being late to
| work or whatever are the ones left out to dry.
| AnthonyMouse wrote:
| > 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.
| freeone3000 wrote:
| 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.
| blincoln wrote:
| > 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.
| troupe wrote:
| > 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?
| lazyasciiart wrote:
| Yes, just like 6yo chimney sweeps were and children in
| sweatshops today are.
| idiotsecant wrote:
| 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.
| kortilla wrote:
| 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.
| xelamonster wrote:
| 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
| throw738484 wrote:
| > 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!!!
| SV_BubbleTime wrote:
| > 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.
| xyst wrote:
| > but that publishing her results could encourage others to
| reject conventional treatment and try something similar, says
| Sherkow.
|
| I don't see the ethical dilemma proposed here. If patient or
| doctor exhausts through traditional medicine, and have the
| financial means and expertise to do "self experimentation". There
| is nothing wrong with this. As long as the self experimentation
| is limited to the patient themselves (1), then there's no ethical
| issue.
|
| edit; although with recent change in political atmosphere in USA,
| there's probably some group out there that thinks this is
| "playing god" or some bs.
| devjab wrote:
| 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.
| lollobomb wrote:
| It is so sad that there are so many vultures eager to make a
| profit out of desperate people with terrible diseases. This is
| why ethical guidelines and FDA regulations are for, after all. Of
| course it would be great to judge case-by-case (the scientist in
| the article is a real hero!). I would like to see a detailed
| cost-to-benefit study on the topic of allowing unapproved
| treatments for terminally ill patients.
| chriskanan wrote:
| On the flip side, potentially very good treatments that can't
| be patented or won't yield a good profit margin are not
| explored because it is very expensive and time consuming to get
| approval for a drug or treatment.
| hinkley wrote:
| Have we ever tried _only_ injecting adjuvants used in vaccines
| into tumors?
| philjohn wrote:
| 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
| benreesman wrote:
| 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?
| philipwhiuk wrote:
| > Over a two-month period, a colleague administered a regime of
| treatments with research-grade material freshly prepared by
| Halassy, injected directly into her tumour.
|
| The real issue is the colleague helping, who is essentially
| acting as an unlicensed medical professional.
| tonetegeatinst wrote:
| Counter argument: when my friend is sick and I reccomend to
| them a natural remedy....but not some prescription
| medication.....am I practicing unlicensed medicine? What about
| performing CPR?
| fallingknife wrote:
| Any crime that ends in "without a license" is a crime I care
| very little about.
| dpig_ wrote:
| How about _" flying a commercial airliner without a license"_
| ?
| fallingknife wrote:
| 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."
| Narhem wrote:
| 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?
| teyc wrote:
| 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.
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