A man who saved a generation of premature babies (2016) | Hacker News Reader

A man who saved a generation of premature babies (2016)

bbc.co.uk

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> 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.

I was studied by med students (during a doctor visit) as a child, nobody even asked. What's so different?

The general public was allowed in as spectators at "The incubator doctor" with only their curiosity as a reason. The med students have a real need to observe patients and conditions as part of their training.

Yes, but from my perspective (back then as a child, but it didn't change much) it's absolutely the same, I am being studied and I don't like people studying me, especially without even asking. My perception does not care about professions of humans that look at my body.

They didn't ask your parents or legal guardian?

My experience in teaching hospitals is that the students back off if asked to do so but I think the request needs to come from the legally responsible person.

I was too and it made me quite uncomfortable. It's one of the few things I still remember from my hospital visit.

Zit-popping channels on YouTube are fairly common. I’m not familiar with the details but it seems people who can’t afford a dermatologist find care that way. Their full face is never filmed so I’m not sure there are blatant issues.

An interesting thing is: patients from areas with poor hygiene, etc. tend to have massive zits, which are clearly the most popular —— so there’s still a whiff of poverty as spectacle. But I don’t have a self-paying economic model for care in that case.

More to the point, I’m always curious about claims that newborns have image rights. I get the principle. Less sure about specific damages.

I’d be interested in the idea that showing the process helps medical education. Antivaxxers (and careless drivers) have benefited from rules about not showing gruesome medical images broadly, including recently with COVID.

> 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.

? improving information access to what type of care is happening has value.

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

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?

Note that in this case though, it wasn't just an issue of affordability. The treatment wasn't available via traditional US hospitals even if you had money.

Indeed, to the extent that I suspect the well-off would go to established hospitals with their premature babies, this is one case where being poor may have been an advantage.

>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?

This is actually possible today, in a way, with crowdfunding. I've seen several funds set up for someone facing expensive medical care.

An episode from the always interesting 99% Invisible about this: https://99percentinvisible.org/episode/the-infantorium/

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.

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.

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