
Bacteria on the Brain - pella
http://www.newyorker.com/magazine/2015/12/07/bacteria-on-the-brain
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ajmurmann
I honestly don't understand the reason why it's so hard to try to help
terminally ill patients with unproven methods as long as everyone agrees that
there is no other, better way to help and as long as the patient wants it.
Prohibiting this seems like a lose/lose decision to me.

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robotresearcher
It's a very long tradition, with well-trodden philosophical background:
"Primum non nicer" (first, do no harm).

[https://en.wikipedia.org/wiki/Primum_non_nocere](https://en.wikipedia.org/wiki/Primum_non_nocere)

Given the consequences of mistakes, a conservative approach has been
considered the best. "It was nature killed her, not me" being easier to
stomach than "oops".

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will_pseudonym
Except "do no harm" is woefully inadequate because it fails to take into
account opportunity cost. They are doing TONS of harm by failing to allow
willing people to try new medicine and advance science and the human race, all
because they have some warped sense of morality that's got horse blinders on.

~~~
robotresearcher
They are absolutely not ignoring opportunity cost. This issue has been
discussed very carefully by sophisticated people for thousands of years.

The current system does allow for experimentation, but provides a conservative
framework for it.

It's huge personal hubris to announce that you know better and they haven't
thought it through. Which is one of the things the approach is aimed to
protect us from.

~~~
Alex3917
> The current system does allow for experimentation, but provides a
> conservative framework for it.

Which most people seem to think is wrong. The vast majority of treatments that
get prescribed by doctors are unproven in terms of safety and efficacy. The
main differences between the status quo and a proper experiment is that we're
not recording any data or allowing for informed consent.

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andy_ppp
I think this article could have gotten to the point more quickly.

Was it that bacteria on the brain can cure cancer and also ruin you life? It
then went on to talk about a reverse engineered virus that was also tried in
some completely unrelated study.

The article seemed to have no structure and make no point. The doctor seems to
have done some very unethical things here but it is treated as if it was the
right thing to do? Maybe it's just the woolly language...

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porejide
In my reading there were three parts of the article:

Part I: Optimism. Is this a new curative treatment for a cancer with an
extremely poor prognosis? We get to see Muizelaar's perspective on why he
(presumably) thought he was doing the right thing.

Part II: The Fall. Deaths, lawsuits, the expose, resignations.

Part III: Resolution. Maybe there is some value in an alternative approach
that focuses on mechanism and iterates towards human trials via animal
studies. But also, maybe there is something to be said about Muizelaar's
approach that our current medicolegal system isn't equipped to handle.

To me, the structure of the article helped to underscore that Muizelaar might
have been right, which is key for using this article as a way to learn about
science and rationality as opposed to solely for its object-level information.
Just listing the facts almost certainly would not have been as useful for
getting that point across.

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jacobush
I liked it. Much better than the simple "LET ME TELL Y'ALL ABOUT AN UNETHICAL
DOCTOR" opening to an article.

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andy_ppp
I'm more frustrated that there wasn't a clear editorial take in the article.
I'd like to have seen some research done by the journalist into what the
correct ethics are in a situation like this. My feeling is that without the
option to have euthanasia (should things get worse) you are promising a tiny
tiny chance of a possible cure but a large chance of increased suffering too.

The tiny chance of 40 more years of life _might_ be worth it but its crazy to
try experimental treatments as a first roll of the dice!

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ScottBurson
> I'm more frustrated that there wasn't a clear editorial take in the article.

I'm glad there wasn't. I think the issues raised are difficult ones, with no
simple, obvious resolution. Sometimes we're better off living with complexity
and ambiguity.

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andy_ppp
It's not complex at all! The doctor did loads of immoral things and the
article sympathised with him.

He even says that he wouldn't attend training because he knows best. After his
treatment caused several patients to suffer more or die earlier.

Sometimes we are better off calling bad medical practice illegal and immoral
rather than trying to say "whaaaaa it's complicated".

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ScottBurson
I don't think it's nearly that black-and-white. The doctor performed a
procedure _he would have wanted performed on himself in the same_ (exceedingly
desperate) _circumstances_. He was careful to fully inform the patients of the
risks. Above all, he had his patients' welfare at heart; he wasn't doing it
for money or fame or even knowledge. What he did may have been illegal, but I
don't agree that it was clearly immoral.

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amedstudent
Well this was a good read. Pretty long and dense for the tech focused audience
here I would guess.

And to address the top comment, reason people don't like doing this is you get
sued when it goes wrong just like in this case. It's safer for yourself to
just stick to the protocol ...

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ajmurmann
I understand that that's a reason why it's not done. However, my question was
about why their legal system is like it is.

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niels_olson
There are some good training modules on citiprogram.org. Just plug in your
institution and select the Key Research Personnel module. You will be beaten
over the head with the numerous historical events that have driven us to this
point. Tuskegee is but one of the many, many examples.

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niels_olson
Thanks for this, I'm drafting an amendment to my IRB protocol right now. Made
me re-read the whole thing. Cricky...

