All because you’re a nurse who thinks she has Nobel-prize knowledge, enough so to imply all doctors who disagree with you to be quacks. You’re evil, ignorant, and narcissistic. At what hospital do you work? I want to make sure I and none of my relatives EVER go there, with “angels of mercy” like yourself working there.
You are making a huge assumption there. If you would actually have read anything I wrote critically, instead of running it through a confirmation bias filter in which you interpret everything I say as "proof" that I am some kind of pro-death fanatic, you might have been able to figure out that I am a medical researcher and that considerations of research ethics and morality are *central* to my work.
As I said, I have studied the ethics of research throughout my career. As a PhD level biochemist, I am completely qualified to look at the "treatment" being proposed and to determine that it is unlikely to improve little Charlie's condition, because 1) it is being developed for a *different* mitochondrial disease, which has a different biomolecular basis, 2) even if it were developed for Charlie's specific disease, it cannot repair the brain damage, but only slow its progression (and the brain damage is severe at this time), and 3) this "treatment" has barely even begun the earliest stage of animal testing and thus is *years* away from being ready for the most basic stage of human testing, which is the safety stage.
So, since the treatment is as likely to work as I am likely to win the Olympics swimming competition (hey, I don't drown in water), I have to look at the question of whether it is ethical to use little Charlie as a guinea pig. The chance of causing him distress (scientific euphemism for pain) is considerable. Being a child, the ethics of conducting tests on Charlie are especially delicate. An adult can stop participating in research at any time for any reason. But little Charlie does not have that option. He cannot communicate. He cannot say, "This is painful. I've suffered enough." Since he does not have autonomy, those who have the power to make decisions for him must be extremely mindful of the consequences of those decisions.
I'm also looking at a history of medical experimentation that has taken place just because there *might* be some knowledge gained--the Nazis and Japanese in WWII, the practice of experimenting on institutionalized mentally retarded children which continued into the 1960s, etc. And I don't see any benefit to adding little Charlie to the long list of victims of medical "experimentation" which has taken place without ethical oversight.
Nobody cares, bedpan-changing baby-killer.