• iiGxC@slrpnk.net
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    7 months ago

    We should make it easier for cancer patients to opt-in to trials.

    I do consider that more ethical, however it’s still far from ideal. We can do our best to make medical trials safer too, not sure why it would be different

    • Turun@feddit.de
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      7 months ago

      If you’re a suitable candidate I’m pretty sure they already explicitly ask you if you’d like to participate.

      I’m curious what methods you suggest to make medical trials more safe. In e.g. construction we can regulate personal protection equipment and mandate machines to do the heavy lifting instead of the workers. We can mandate more time off and corporate fitness programs to keep the people healthy. But how would you make a safer clinical trial?

      • iiGxC@slrpnk.net
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        7 months ago

        Better non-animal pre trial tests (this is a broad category of things), full health care such that any side effects will be cared for and they’ll be compensated for accordingly, better information sharing so people can give fully informed consent.

        those are the main things that come to mind off the top of my head, I’m sure there are other things that could go into it too

        • Turun@feddit.de
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          7 months ago

          Oh, I had hoped for some proper thoughts on the matter. The first suggestion is too vague and the other two are already the status quo. In fact I have heard (anecdotally) someone got treated for something that, with 99.9% certainty, was unrelated to the clinical trial they, were participating in. But it occurred during the trial, so their health care costs were covered in full by the clinical trial. And if you ever witness that participants of a clinical trial were not fully informed you should report it. The ethics committee and lawmakers take that extremely seriously.

          Edit: to better explain my previous point about safety. When we talk about a usual job being dangerous what we mean is that you’re supposed to do A, but B might happen and hurt you (build the scaffolding for a house, but pinch your hand when connecting two pieces). Therefore we mandate PPE, maximum working hours, machine assurance, etc. This is possible because the actual job is tangential to the risk associated with it.

          A clinical trial is, going from beginning to end: we have simulated this drug in the computer and tested it on cells. Now we need to check for interactions with other parts of the body. For statistically significant results we need 50 animals, we put cancer in them, wait two weeks and then start treating them like we would treat a human who has this cancer. We vary dose and when to give it, maybe the mixture of compounds if the drug is not just a single active component. A lot of the animals will have to be put down when it becomes apparent that this configuration of the drug does not work. But we have a better understanding of the working of the drug in the body now. After that trials move on to human patients. First we start with people who are sick and for whom the current method of treatment did not work. They will die soon anyway, but there is a small chance that the new drug will work on them. Again we vary dose etc, but now we know much better what range of dose is useful. This results in much more difficult to handle data, because taking a few random people will introduce wild variations in confounding factors. But it’s a necessary step to show that the drug works in humans, because we can’t move on to testing the new drug on people for which the old method of treatment would have worked. After this trial is done it is finally time to try the new drug out on people who come to the hospital to seek treatment. The doctor may offer you the chance to participate in a trial for a new medicine if they think you’re a fitting candidate. This trial will test the medicine for the first time against a proper sample of the population. Only now can we say for certain how much better it is than the old drug (or maybe it’s worse) and tease out details from the data (e.g. It’s usually better, but it’s worse if the person has a cold and is overweight when starting treatment. Or it causes severe allergic reactions for people who have asthma that is triggered by grass pollen)

          It’s important to note that at every step of the process a drug can fail testing. Researchers want the drug to fail early, because every step costs money and time. When we get better simulations or artificial organs to test on they will be used, because it’s so much faster and cheaper than going to animal trials with a promising drug, only to find out after three months of hard work that it doesn’t work.

          Now, the safety concerns in clinical trials is that we have a current drug that works, and we have a new drug that may work. Is it ok to not treat someone with the known working one, just to see if the maybe working one helps? Most people say no. The danger is inherent in the thing, which is why we have such a lengthy process. There is no PPE you can wear to reduce the effects of cancer when the trial requires you to have cancer. We must get to the stage of “it’s most likely working better than the current treatment” before starting testing on otherwise healthy humans.

          • iiGxC@slrpnk.net
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            7 months ago

            Yeah, sorry for being vague. I’m not super knowledgeable about the field, just like if you asked me “how do we make deep sea welding safer?” I would maybe come up stuff like “put the welder in a shark cage” or “have them wear plated body armor so they don’t get sucked in” or “make sure to train the diver really well and only go if they’re feeling really well prepared/alert” but idk if those are actually the best way to make it safer, or whether they’re already done.

            Let me ask you this: are you opposed to professional fighting? Boxing, wrestling, wwe, etc? what about football or other sports where injury like concussion is common? That’s a huge risk to health being done for money, and lots of poor folks are able to use those sports to get out of poverty. I don’t think that’s good, there should be nobody in poverty and the people doing sports should be doing so entirely voluntarily. Likewise my proposed bandaid to ending animal testing now is not ideal, but imo it would be just as valid as doing dangerous sports for money

            And I do think a lot of people would be willing to try experimental medicine for their ailments voluntarily. It’s fulfilling to be able to help contribute to humanities knowledge and help ratchet us forward, and being well compensated sweetens the deal even more

            • Turun@feddit.de
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              7 months ago

              Fair enough. If you can recognize that you have a strong opinion based on ethics, and are willing to read up on how things are currently done and what the problems are (both with the current way and with the way that your ethics would like it to be) thats fine.

              Let me ask you this: are you opposed to professional fighting? Boxing, wrestling, wwe, etc?

              I’m not a sports guy (at least watching sports, I do exercise weekly) and would barely notice if those would no longer exist tomorrow. So I am certainly not one to defend their existence.
              And yes, I am super critical of professional sport and how much these people hurt themselves. In German we have a saying: “Sport ist Mord”, sports is murder. I think in the broad population it’s also used as an excuse if you’re lazy and don’t want to exercise, but for me it appropriately hits on the problem of professional sport. Some are better than others, for example I have not heard of many negative consequences from swimming on a professional level. But I think the problems that people get from playing rugby on a professional level are absurd. There are measurable levels of IQ drop after a few years of working as an athlete. I have absolutely no idea why anyone would willingly do that.

              One difference is that in order to get to such a level you need talent and need to be into it from a young age. Yes, some people can lift their family out of poverty with it. But not because they needed some quick money.
              A better comparison to paying big money for participants of clinical trials than sports is selling your kidney. You only need one, technically, so it’s safe on paper. But it’s a surgery that comes with some inherent risks to your life. And there is a reason we usually have two.

              And again, the injury is tangential to the performance. In clinical trials a sizable fraction of the “patients” die (cells, animals, humans. The earlier in the trial the bigger this fraction. Animal test are there to hopefully have the number be zero when we get to human trials), until we know what dose is effective and safe at the same time.

              • iiGxC@slrpnk.net
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                7 months ago

                Yep, I don’t think the benefit we get from animal testing justifies exploiting animals like we do. I’d rather die because we don’t know how to cure me than force any animals through what we do to them in testing, and I think it’s selfish to say they should suffer for our gain. And to be clear there are aspects of my life where I act hypocritically there (e.g. crop deaths) but I’m working towards getting to a spot where I don’t depend on that kind of thing, and if we as a species actually put our minds to it I think we could solve those problems so it didn’t take such a tremendous amount of personal effort to stop contributing to it. But we need enough people to even recognize it’s a problem worth solving first.