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Babies On Display: When a Hospital Couldn't Save Them, a Sideshow Did (2015) (npr.org)
139 points by raldi on June 12, 2017 | hide | past | web | favorite | 45 comments



That's the most heartwarming NY "hustle" story I've ever heard. Working long hours at a carnival, in the NY summer heat, pre-air conditioning (he started in 1896!) to save thousands of lives for no recognition. He did this for half a century, and for no profit either: he provided free medical care to the parents!

This man is a damned hero. Stories like these are why I could never sympathize with eugenicists, who prevented incubators from being introduced in hospitals until the 1940s.


Although no one uses eugenics to justify it anymore, there are still plenty of infants who are allowed to die because of severe birth defects that prevent mental development or give a high risk of early death. The moral situation arguably has greatly improved, but the difference between then and now is not nearly so clean cut.


That's a different situation, isn't it?

I mean, it depends on the specifics, but if you have someone who'll never reach even the intelligence of a cat... It's hard to justify their life on ethical grounds, when effectively "they" don't exist. Maybe that wasn't the situation you had in mind.


Most people don't value human life in proportion to intelligence. You can certainly construct an ethical framework with various thresholds, but my point is that the actual rules in place today reflect a regulatory equilibrium rather than a self-consistent moral philosophy. Most sensible philosophies will consider at least some modern accepted practices to be morally reprehensible.


> but my point is that the actual rules in place today reflect a regulatory equilibrium rather than a self-consistent moral philosophy

I guess since people's morals are so varied, it's too hard to agree on a self-consistent moral philosophy. As an extreme example, just look at cases where people will ensure the right for a child to be born, but then not ensure rights to continuing health/nutrition/education. Beyond outliers like that there's a spectrum of every kind of opinion


Under that logic, we'd stop saving the lives of the homeless in ERs unless we also gauranteed their health and education.


Makes sense to me. Why save someone's life if you're going to kick them right back out onto the street to die in some alley again?

You may not be surprised to hear I'm from a country with a strong social safety net (which I guess works because there is more consensus on life over liberty)


How do you justify the cat's life then, or any life? What level of intelligence has to be met? Who defines that? Why is intelligence the defining attribute?


I hope I wasn't the only one who thought for a moment that this was talking about a startup incubator. Even though that wouldn't have made a whole lot of sense.


The title was "Incubator pioneer funded his work by displaying premature babies at a carnival" before it was changed.


I read the current title, "Babies On Display: When a Hospital Couldn't Save Them, a Sideshow Did (2015)" as slideshow instead of sideshow!


That'd have to be one hell of a PowerPoint!


The title churned my stomach until I took a moment to think about it a little more. Eesh.


I thought exactly that after reading the title and for some reason was only mildly surprised by it.


Context: https://www.amazon.com/Black-Stork-Eugenics-Defective-Americ... https://en.wikipedia.org/wiki/Harry_J._Haiselden "Harry John Haiselden (March 16, 1870 – June 18, 1919) was the Chief Surgeon at the German-American Hospital in Chicago in 1915 who refused to perform needed surgery for children born with severe birth defects and allowed the babies to die, in an act of eugenics."


We changed the URL from http://www.npr.org/sections/thetwo-way/2017/02/25/517221933/... by the submitter's request. The two articles are closely related of course.


I was not expecting "sick babies displayed at carnival sideshow" to be a wonderful, heartwarming story.


This is a lesson in shifting morals, and brings to mind a discussion I had that for me puts the nail in AI, modelling rational systems is 'easy', modelling systems that change over time is very hard, how would an AI's moral system keep in lockstep with the shifting whim of humanity ?


Speaking of morals, is it really moral to not promote and invest in kidney transplants rather than have the federal government pay for dialysis for 5+ years before a person dies (due to the failed kidneys usually)?

We could easily get most people off Dialysis, and allow them to live much healthier and longer lives if we allowed patient collectives (akin to Iran) to reward donors with cash and healthcare for the rest of their lives.

Why do we choose to let this chunk of our population die slowly and at great expense, rather than do a (relatively) inexpensive & safe transplant? Seems twisted and sadistic on society's part to basically tourture this segment of the populace.


I sympathise with your aim, more donors is a good thing, however some of the restrictions on sourcing donors are in place to protect vulnerable people from abuse, so it's not a clear cut decision, if AI is to replicate human thinking it would need to have these kind of discussions, I don't think we really want or need AI, faster and smarter calculators yes; the idea that this is 'intelligence' is akin to attributing intelligence to trees because we have libraries.


>Speaking of morals, is it really moral to not promote and invest in kidney transplants...

This is not an easy subject, but I think there is nothing immoral about letting a human being die if their organs fail...It can be thought of as being sad. But not immoral or evil.

Also, since death is inevitable, I think in most cases, it is better not to drag it out. And on the whole, it is better not to provide alternatives like this. People, out of obligation, won't let a family member go, (even if they are of old age). So in the end, even people who are not financially sound will be forced to pay huge sums of money...

Just wait until hospitals build a market around this, and you can bet that it will be followed by immense social pressure (perpetuated by these markets), to follow this norm.

In the end, the net suffering increases...

There is also another thing another user pointed out by another user when this topic came up before.

When this has become norm, then you will be expected to pay things via your organs. If you are not financially sound, then your son/daughter will probably expect you to pay for their higher studies via your organs..People will ask, hey why don't get a car, so and so companies have schemes based on the health of your kidneys...(unthinkable today, but hey we are talking about how morals change, right?)

The thing is, for most people, leading a poor (as far as you are not starving) life is better than having some temporary prosperity by selling a kidney and leading degraded life till the end....

Now. That is evil.


I disagree vehemently with your viewpoint. I fear that you've been trapped by the vivid image of an impoverished, innocent, victimized person being blackmailed in a dark alley into selling their kidneys (picture someone like Fantine from Les Misérables) and try to stop that at all costs. That's wrong, though: Nothing is worth stopping at all costs, that denies the meaning of the word "cost". We need to objectively weigh the costs of that image against the vague tragedy of early death in a hospital bed multiplied by the 18 million people currently dying in need of a transplanted kidney. And added against that sum, consider that the vast majority of donors would not be victims at all. A few points which I think deserve consideration are:

> This is not an easy subject, but I think there is nothing immoral about letting a human being die if their organs fail...It can be thought of as being sad. But not immoral or evil.

It is most certainly evil if there is a perfectly good spare kidney just sitting around in a nearby abdomen, and someone dies because they don't have access to it. Human life is intrinsically valuable because of the consciousness and experiences of the mind which is enabled by functioning organs. If the organs cease to function, that does not reduce the value of that life, or imply that the 'time was right': every death is a tragedy.

> Also, since death is inevitable, I think in most cases, it is better not to drag it out.

Death is temporarily avoidable (evitable?). It cannot be infinitely extended (yet), and you can talk about weighing the costs of people suffering for extended periods of time at great cost in hospital beds or from mental illness against the happy people who made unlikely recoveries....but this weighing does not reasonably extend to kidney failure. Kidney replacement often takes people who were otherwise healthy and happy from suffering an unnecessary early death into many more years of happy, healthy life. When death can be avoided with this level of success, it should be.

> The thing is, for most people, leading a poor (as far as you are not starving) life is better than having some temporary prosperity by selling a kidney and leading degraded life till the end.... Now. That is evil.

Three responses to this: First, this will not be the epidemic you describe. Second, the life of the donor is not degraded as you describe. Third, consider the recipient.

Demand in this market will have a very small cap. You can't sell more kidneys than there are people who need transplants. There are currently about 20 million people worldwide who need transplants, so only 1 in 350 people will have an opportunity to profit from this market. You won't have a large class of society who depend on the ability to fund their children's education with one parent's kidney and buy a retirement home with the other.

The donor of a kidney will be unlikely to suffer a degraded life. Most people really don't need two kidneys to survive. Kidney donation is a very safe procedure, and donors typically live a full life after donating. It's prudent to perform regular check-ups, and there is a slightly increased risk of needing a transplant (after all, you only have one kidney left!) - but in a world where kidneys are available to those who need them, that's less of a problem. Also, remember that temporary prosperity used to, as you describe, fund an education may lead to permanent prosperity, and that poverty often does result in a reduced lifespan and sometimes in starvation.

Finally, even though these donors are a small population, are not negatively affected by donating and could in fact be positively affected by it, consider the recipients. Even if there were a significant negative result to the donors, it might result in more positive utility overall. The people in need of a kidney could, in one world, suffer in a hospital bed on a dialysis machine for the short remnant of their life. In the other, they could live many more happy years with a transplanted kidney.


>I fear that you've been trapped by the vivid image of an impoverished, innocent, victimized person being blackmailed in a dark alley into selling their kidneys (picture someone like Fantine from Les Misérables) and try to stop that at all costs.

No. That is not true.

>It is most certainly evil if there is a perfectly good spare kidney just sitting around in a nearby abdomen...

You seem to imply that it is "spare" and "just sitting around", doing nothing, which is not the case. I somehow find that statement extremely disturbing...

>Human life is intrinsically valuable because of the consciousness and experiences of the mind which is enabled by functioning organs. If the organs cease to function, that does not reduce the value of that life, or imply that the 'time was right': every death is a tragedy.

On a bigger sense, human life is worth as much as any other life. You are saying it is worth more because of "consciousness" and "experience"? I am sorry, I am not sure what to make of it or how it is relavant to the discussion..

>Demand in this market will have a very small cap. You can't sell more kidneys than there are people who need transplants.

Oh. Wait till this market is in full bloom, and we can see transplantation "prescribed" quite frequently...

>The donor of a kidney will be unlikely to suffer a degraded life...

Ok. What happens when the remaining kidney of a poor donor fails? I see you have addressed it in your comment. But you hand waves it by saying it is not a problem if they can afford it, when the whole reason they sold the kidney was they were poor!

>The people in need of a kidney could, in one world, suffer in a hospital bed on a dialysis machine for the short remnant of their life..

People in need of money, of food, of basic necessities of life, of a roof about their head, has been suffering for ages. The rich has their mansions, studio apartments, their suv's and limos. They didn't think that the money they have lying around is "spare", and didn't re-distribute their wealth among the poor and needful...

Now the rich wants to "help" the poor by enabling them to sell their kidneys!!

Oh the hypocrisy!


The alternative to a donor organ market is additional financial incentives to develop and improve implantable artificial organs.

Currently, you need a bulky external machine for hemodialysis. At first, they were available only in hospitals, then in outpatient clinics. Now people can keep such machines at home, and use them as they sleep. I would predict that these machines would first become cheaper, until hitting a cost threshold, then become smaller, until hitting the size of a large suitcase. Then they would have an implantable component, and an external satchel-sized wearable component. Then development would stall until the patents run out.

As dialysis treatment runs about 6% (!) of the Medicare budget, one might think that the US would have a significant incentive to fund research into reducing the cost of treatment for kidney disease. Sadly, this does not appear to be the case.

Most of that money is now going to private dialysis companies that have optimized their business models around the Medicare payment rules. Their incentives are not to improve patient care, but to suck as much federal money out of the trough as possible.


> What happens when the remaining kidney of a poor donor fails?

We could mandate that anyone who sells a kidney has to buy insurance for that risk.


>> I fear that you've been trapped by the vivid image...

> No. That is not true.

I'm glad it's not true for you, but that appeal to emotion is a frequent problem in this and similar debates (terrorism, child safety, . Glad to get that out of the way!

>>> This is not an easy subject, but I think there is nothing immoral about letting a human being die if their organs fail...It can be thought of as being sad. But not immoral or evil.

>> Human life is intrinsically valuable...

> On a bigger sense, human life is worth as much as any other life...I am not sure what to make of it or how it is relevant to the discussion.

Sorry if I was unclear. I was trying to understand and respond to your comment that it's not immoral to let a human being die when their organs fail. I argue that the moral worth of a specimen of homo sapiens is not in the function of their organs, which would lose that value when the organs cease to function, but in the function of their mind. Because that value could be preserved through donation of a kidney, policy which prevents that from happening is an immoral act.

> What happens when the remaining kidney of a poor donor fails? But you hand waves it by saying it is not a problem if they can afford it, when the whole reason they sold the kidney was they were poor!

Kidney transplants for both rich and poor are, and will be, covered by medical insurance or universal health care. Whether you ever need one or not, on average, you will pay your share of approximately 1/350th the cost of a kidney replacement as a member of modern society. In today's market, with expensive dialysis frequently used in place of unavailable kidneys, that results in about 6% of the Medicaid budget going to treatment for kidney failure. I expect that this cost would be reduced if kidneys were more available.

> Now the rich wants to "help" the poor by enabling them to sell their kidneys!! Oh the hypocrisy!

This is not hypocrisy in the slightest. The rich and the poor want to help the rich and the poor by making everyone's kidneys available to everyone that needs them. I'm both healthier and wealthier than the general population, and would welcome the opportunity to donate a kidney, similar to the fashion in which I donate blood on a regular basis. But my current medical insurance will not pay for a living donation to anyone who is not a family member or friend, and I could have higher insurance costs in the future if I volunteered to give one of mine away, to say nothing of the small risk I would incur. I am wealthy, but not so wealthy that I can afford to donate my kidney, donate the cost of the procedure, and donate the cost of future insurance. I'm not suggesting the donation should make people rich, but rather that it would let them break even.


"""It is a sad indictment of the human condition that wherever there is a market, people will strive to find a profit margin even when this results in human exploitation."""

https://www.ncbi.nlm.nih.gov/pmc/articles/PMC3291132/

Because having a market for everything with no bounds isn't a good thing.


"It is a sad indictment of the human condition that wherever there is a market, people will strive to find a profit margin even when this results in human exploitation.

This is true of all markets, though. Plenty have been and are exploited in labor markets of all sorts. If the mere possibility of exploitation is sufficient to justify outlawing a market, then we must illegalize the hiring of miners, fruit pickers, construction workers, even office secretaries, which are occasionally sexually exploited by their bosses.

Because having a market for everything with no bounds isn't a good thing.

Sure, but why shouldn't the bound be after this? Certain markets would still be illegal.

-

By the way, I'm not necessarily convinced that it should be a market, I just find these arguments weak.


True - and it's not by accident - a market exists only because exploiters do. The very purpose and mechanism of markets is to limit the degree (not prevalence) of exploitation by forcing exploiters to compete with each other. That's what markets are, that's the whole idea.

Where you want to make exploitation illegal (say drugs, prostitution) you don't want a market - but you lose it's benefits, too. For example by reducing competition and increasing the price of entry, thus greatly enriching the most successful criminal gangs. (Especially true re drugs.)


It's interesting to note that Marx's concept of exploitation (which is a much, much broader one than the examples you're using here, though they certainly qualify) does say that it would be within the best intersts of the working class as a whole to rise up against such a system and indeed to illegalise (well, prevent in some way) hiring.


Sure (though the concept of wage-slavery is older than Marx), and I'm not necessarily opposed to that either, but it doesn't really justify the status quo.


I have at various times wanted to start a non-profit that would provide benefits similar to veteran benefits (paid college tuition, paid health insurance, etc) to people who donate kidneys to strangers at the top of the transplant list.

The fact that the kidney goes to the person at the top of the list solves the potential issues of the rich getting better health outcomes because they can pay. Also, we as a society have already accepted these benefits as being acceptable reward for risking life in order to (ostensibly) save American lives in a military context - this simply extends the concept.


That's the first step on a bad road.

Step 1: Reward volunteer donors with cash, healthcare

Step 2: Reward 'volunteer' donors with welfare, housing

Step 3: Reward 'volunteer' donors with reduced criminal penalties

Step 4: Reward 'volunteer' donors with reduced prison sentences

Step 5: Make donation a compulsory sentencing option

Step 6: Compel criminals to donate both kidneys

Now you're China.


Step 1: Trim your fingernails

Step 6: Chop your arms off


Ha! Fun game. We can make up junk and make anything look bad! How about:

1: go to church

2: compel others to go to church

3: lock the doors and burn the place down


What you're missing is that China is already executing prisoners in order to harvest their organs. This isn't hypothetical. So anyone who wants to advocate for selling human organs for transplant need to address how to avoid abuse of powerless victims who may be compelled to donate.


Speculative? They're using kidneys from prisoners, once they are executed. To turn around cause and effect is disingenuous. You can guess that that may be happening; to state it as fact is quite a stretch.


Morals are just mental shortcuts for cases when the rational explanation is over the head of most people.


My great-aunt was one of the Coney Island babies. She's not dead yet, last I heard.


BTW - I just confirmed that she is alive and well with my Uncle.



I think about this story every time I hear "Goodbye My Coney Island Baby" and imagine someone serenading an infant in an incubator in 1920.


this seems applicable to libertarianism


Couney used Coney to incubate his incubators!


Couney hacked Coney to incubate his incubatores




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