
A man who saved a generation of premature babies (2016) - EndXA
https://www.bbc.co.uk/news/magazine-36321692
======
mncharity
> Today it would be considered unethical to exhibit premature babies and
> charge fairgoers to see them [...] have to think back to that time [...]
> Nowadays when new technology comes out we do randomised controlled trials.
> [...] the shows were a way of demonstrating the benefit of using incubators

I'll leave aside ongoing issues of wealth affecting access to trials, of
pipeline latency, of high variance in quality of care, and of anticipated
financials determining which innovations are pursued or not so much.

The shows were also about paying for treatment. How many people in the US
today, would be eager for quality care from an "unethical" side-show clinic,
rather than delaying their own care, or being bankrupted by it? What elements
of your care would you opt-in to being livestreamed, if it meant you didn't
have to pay for them? Free quality dental care at the mall... shown live on
the big screen, with the dentist's running critique of your brushing.

There seems a recurring pattern of tuning regulatory and structural costs for
some market segment, tolerating a low-profile gray or black market to serve
those completely excluded, and not acknowledging the life impact on those
inbetween.

~~~
rbanffy
> How many people in the US today, would be eager for quality care from an
> "unethical" side-show clinic, rather than delaying their own care, or being
> bankrupted by it?

It's deeply revolting someone would need to face such a choice.

~~~
emiliobumachar
How revolting is the status quo, i.e. nobody has to face such a choice because
one of the options is illegal?

~~~
rbanffy
You know that in most developed countries (and most developing ones too) you
wouldn't have to face this choice because you wouldn't need to pay for medical
treatment, right?

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timvdalen
An episode from the always interesting 99% Invisible about this:
[https://99percentinvisible.org/episode/the-
infantorium/](https://99percentinvisible.org/episode/the-infantorium/)

------
meristem
Access to care continues to be an issue. When my kids were in NICU some
parents were driving 3 hours each way every day to see their child because
their newborn had to be in UCSF to survive.

~~~
ed25519FUUU
And the poor children need to be held, and feel the warm embrace of another
human being (hopefully their parents), but because of concerns around
machinery and sanitation it's still very difficult to make that happen.

