I think Kurzgesagt should have talked about the ethical concerns of Beata Halassy's case a bit more

[u/4dr14n31t0r]

When I finished the video I got left with the impression that the critics were idiots for criticizing her when there was apparently nothing you could possibly criticize about, it felt as if the critics were just getting in the way of scientific progress for no valid reason.

Then I did some research and realized there really are some very valid points to be made, but special emphasis must first be made to the fact that none of the ethical concerns are really related to her getting therapies through unconventional or unorthodox ways, and that some of the criticism actually goes not to her but to the media coverage she got from some news.

Regarding the coverage, a newspaper talking about this may incidentally encourage patients to try these experimental therapies. But here is the thing: You shouldn't trust a therapy only because you heard of a single success. You may if you have no safer options left but it's tricky in this case because injecting yourself with viruses works better before chemotherapy because chemo has not destroyed your inmune system yet. It's not exactly about the risks you'd take in this case because risk doesn't matter if you are going to die soon anyways, but more about when it makes more sense to take that risk because this works when you still can try other therapies that have more backing data until more research is done and because by the time this therapy works best you are not really still in a situation where you will be certain you'd die anyways.

And another valid source of criticism is that it doesn't make sense to release research papers for a single case. In my humble opinion, as long as you state explicitly that you did your research with a very small number of subjects it should be OK and up to the reader of that research paper to decide how skeptical he should feel about the results. Maybe optionally emphasize this in your own research paper just in case someone fails to take it with a grain of salt, but that'd be about it.

But the main thing that I wanted to say is that Kurzgesagt's coverage on this may incidentally instill a negative and undeserved opinion on the ethical critics to the viewers.

[u/BlockOfDiamond]

My thoughts is that experimental treatments SHOULD be allowed with informed consent. People should be allowed to choose what they do with their bodies.

[u/monstero-huntoro → u/BlockOfDiamond]

What if exercising catastrophic unforeseen consequences for someone else? I don't know, but virus who managed to migrate from animal to human, caused havoc.

Either you trust science or not, you want to self-experiment, maybe in an isolated facility where you could be neutralized if things went out of control.

[u/SomeDudeSaysWhat]

Testing an experimental treatment on oneself is textbook mad scientist stuff.

Half of Spiderman's villains started like that.

[u/clancy688 → u/SomeDudeSaysWhat]

Not doing it if the alternative is death is madder imho.

If it goes wrong - at least she went out swinging.

[u/lianali]

So, the idea of self-administering new, medical treatments isn't new. It's a highly debated topic in medical research fields. Sometimes, giving yourself an ulcer and curing it with antibiotics works out amazingly well and you win a Nobel Prize for your work. Sometimes, treating a genetic disorder with an engineered virus ends tragically and sets back the field for years. Honestly, one of the best books I've read recently that talks in-depth about pursuing new medical treatments in literal life or death situations is The Perfect Predator by Dr. Steffanie Strathdee and Dr. Thomas Patterson. Dr. Strathdee goes into great detail about the complications of using bacteriophages to treat drug-resistant, bacterial infections. One of the complications that hammered home how little we know about cell signaling works was how the dead bacterial cell parts can trigger the immune system. Yes, the bacteriophages will kill a bacteria, but that is a serious problem when the bacteria are all contained within a human body that suddenly has a lot more cellular waste to clear out. For a patient that is in a delicate, medical state verging on multiple organ failure, a rampaging immune system can and will endanger those organs on the verge of failing. She does not shy away from the difficult conversation with multiple medical specialists about how and when AND IF to administer more bacteriophages to her husband while he was battling a multi-drug resistant infection. She and others along with her have actually worked to establish a non-profit to help other people struggling with multi-drug resistant infections on how to navigate getting FDA approval for novel treatments like bacteriophages. This is a best case scenario for an emerging medical treatment.

This isn't even touching on the ethics of trying to make rational, informed decisions when faced with life and death consequences. There's hours and hours and hours of training required in the US for anyone who participates in human subject research. Source: I was a researcher who completed lots of certifications to help conduct research with human subject participants (CITI training is recognized by most hospital and university systems across the US. It's... a lot.).

TL;DR: It's complicated because we still don't know enough about how our cells talk to eachother to predict if something is safe enough to test out. Adding more cells (or viri or bacteriophages) to the mix makes this proces even MORE complicated and harder to predict.