About treatment versus experimental treatment:

Treatment: from the perspective of the care provider the goal of treatment is to earn money by selling treatment in compliance with the relevant laws (just like anyone doing any job has the goal of earning money too)

Experimental treatment: the goal is to use the scientific principle to learn about and unbiasedly report the positive and negative potential effects of the experimental treament under study, in exchange for subsidies or research capital etc... where the subsidy is typically conditioned on actual research adherent to the scientific principles.

About consent for treatment: before selling a treatment informed consent must be acquired (depending on the laws, if not from the patient then from close relatives or assigned caretakers, ...)

About consent for experimental treatment: not only is informed consent necessary for the actual treatment, but also informed consent for reporting in an unbiased fashion on any potential effects and complications of the treatment. If such the relatives do not sign a contract consenting to publishing about any negative complications, then the patient under question does not qualify for experimental treatment! Go find another patient, whose relatives do sign in advance a contract illustrating informed consent to not just the treatment but also the publication of any complications!

So when you quote:

>> We respected the family decision to not communicate about the event

and then write:

>You should know there's no "winning" when it comes to media.

Then I don't see the relevance of "winning in the media" to scientific research. As a researcher you should merely simultaneously abide by the current laws on one hand, and abide by your own morals on the other, if any prevent you from performing an experiment you should simply refuse to participate.

> You'd have seen another article saying "Doctors don't obey family's wishes, broadcast death of patient".

That is impossible if the doctors had properly acquired in advance the informed consent for "experimental treatment" (including the consent for publishing complications). So someone somewhere did fuck up protocol to safeguard the scientific principles in this hypothetical case!

I don't know if they did or did not in advance acquire informed consent for publishing any potential complications but there are 3 options here:

1) They did acquired this consent, but actively suppressed the death from the report, and upon being called out they doctored a justification based on consent of the relatives.

2) They did not acquire this consent: they fucked up, and couldnn't publish as they claimed, but did not willingly suppress the information. After being called out on the suppressed death they claim their hands were tied (this is what is being circulated, the "gagged researcher" trope).

3) They did not acquire this consent AND they willingly suppressed the information. After being called on on the suppressed information, they correctly pointed out that they did not technically possess consent to publish about complications or death. This is like perpetrator justifying why he lied during interrogation, because he didn't have the deceased victim's consent to talk about the true circumstances of her death. This strategy is ultimately more and more incriminating, and harder and harder to climb out of the web of lies. You would expect most people to have learned this basic life lesson as a child at school...

>But I can understand why the doctors wouldn't want to share this with the world. The general audience is 99.9% made up of title readers and googlers. And since public opinion matters in such cases they were all but guaranteed to blow the research.

I call BS on this: you can find an endless amount of scientific articles in medicine openly describing death rates, the influence of doing or not doing something by randomly sorting people into control and hypothesis groups etc. Of these articles 99.9% do not generate controversy, even though anyone can read this article, decide to identify with a patient from group X and see that your outcome is inferior to those who were grouped in Y... Most people are too busy with cat memes to read the boring articles with greek or latinized terminology etc. The controversy was mostly by people who understand both the scientific principles, and the principles of informed consent and privacy...

>And speaking of googlers, a word of advice for anybody who's not a doctor: finding "links" using Google and a handful of vague details in an article is a useless endeavor. You'll only conclude what you'd want/like the cause to be and even if you somehow get it right it will still be for the wrong reasons.

Here I partially agree. It all depends on how acquainted the reader is with the scientific principles, with statistics, ... Doctors are valuable, their consideration time is valuable and scarce. In a libertarian economy the system is ideally geared for the best consideration per dollar (irrespective if the money comes from the patient or subsidized by government) by 1) optimizing the quality of consideration per unit of doctor time through education 2) optimizing doctor time per dollar by competition (supply and demand). So when you have a problem and visit a doctor that doctor does not have infinite time for you. Depending on your life and skills, you may be able to surpass the quality of hasty 20 minutes of consideration by investigating on your own. The bulk of the population is currently incapable of doing so, I certainly agree, and I think it would still apply to programmers, where statistics and the scientific principles aren't as emphasized as in the exact sciences. But people with a background in exact sciences are used to the scientific principle, and know how to search, find and navigate a new domain of knowledge. They know not to blindly assume they understand a new concept from context (as people do when learning a new language), but actually look up each new concept they encounter.

>P.S. > there is "no" risk

>I understood it as "there is no link between the study and the death". And one easy way to conclude this is to positively link the death to something else.

There is NO easy way to conclude !(A => C). You claim that finding any B => C implies !(A => C), but that does not follow, for example perhaps A => B => C, and A still causes C if indirectly so.

If a car driver hits a bicycle (A), and the driver of the bicycle falls (B) and breaks his neck (C), then identifying that falling from the bicycle (B) caused the breaking of the neck (C) does not mean the car driver hitting the bicycle did not cause the accident.

No matter which sample size you consider necessary for which level of suspected causation, this threshold should be independent of the positivity or negativity of the effect if you wish to be considered unbiased. If you consider sample size N=1 sufficient to consider the potential positive effect of kickstarting consciousness as causally resulting from the intervention, then sample size N=1 should be equally sufficient to consider the potential negative effects (such as death) as causally resulting from the intervention. If they didn't want "unfair bad publicity" due to stochastic nature of N=1, then they should have designed the experiment to have a higher N... otherwise it's just cherrypicking...