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Speaker 1: Can you imagine having to make a decision about who

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Speaker 1: gets access to something that could save their lives, and

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Speaker 1: as a result, who doesn't get access. Would you use

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Speaker 1: a lottery system an algorithm? Would you make a call

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Speaker 1: on a first come, first serve basis? Well, in the

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Speaker 1: nineteen sixties in Seattle, a committee, almost like a jury

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Speaker 1: of local citizens were asked to do just that.

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Speaker 2: When first invited to serve on the committee, I was

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Speaker 2: very uncomfortable, feeling that I was taking the place of God.

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Speaker 1: We're about to hear from Rick Mazel, a medical historian

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Speaker 1: at the University of Houston. A few years back. Rick

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Speaker 1: was doing some research when he came across this story.

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Speaker 3: I'm a good and for punishment, I like topics that

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Speaker 3: are difficult to research and find.

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Speaker 1: He found this one article about the committee in Seattle

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Speaker 1: that caught his attention.

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Speaker 3: I was curious as to why I didn't know that

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Speaker 3: much about it. For whatever reason, historians have stirred queer

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Speaker 3: a bit of this conversation. It was really a fascinating

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Speaker 3: but difficult scenario to engage.

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Speaker 1: So Rick kept digging. He found out the story started

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Speaker 1: with the grand opening of a medical clinic. The treatment

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Speaker 1: the clinic provided was highly specialized and time consuming. So

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Speaker 1: time consuming that patients had to go in twice a

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Speaker 1: week and get hooked up to a machine overnight.

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Speaker 2: All night while they read or talk, or work or sleep.

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Speaker 2: The entire blood content of each patient as being circulated

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Speaker 2: through an artificial kidney and clean and pumped back into

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Speaker 2: the body again.

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Speaker 1: These clips from an NBC documentary called Who Shall Live,

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Speaker 1: filmed a few years after the Seattle Artificial Kidney Center opened.

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Speaker 1: It aired in nineteen sixty five on Nash Television and

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Speaker 1: created quite a stir. The kidney Center was revolutionary. It

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Speaker 1: was the first place in the whole world to offer

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Speaker 1: long term kidney dialysis, a brand new type of life

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Speaker 1: saving treatment. There was just one problem.

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Speaker 2: The cold, hard fact of the matter is, there are

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Speaker 2: just so many places available on the kidney machine, and

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Speaker 2: there are more applicants than places. Somebody has got to

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Speaker 2: be left out, and somebody has got to decide who

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Speaker 2: shall live and who shall die?

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Speaker 1: Yikes, who shall live and who shall die? When Rick

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Speaker 1: saw who the people were who would determine that, he

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Speaker 1: was shocked. The Kidney Center put seven seemingly random people

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Speaker 1: in charge. They would later come to be known as

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Speaker 1: the God Squad, the ones to determine the fates of

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Speaker 1: thousands of their neighbors. It was up to then to

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Speaker 1: decide which would be saved.

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Speaker 3: I thought it was pretty unbelievable that they would have

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Speaker 3: lay people and community people making this decision.

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Speaker 1: This whole thing, this attempt to figure out who should

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Speaker 1: have access, became so controversial, such a pivotal point that

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Speaker 1: it would become a wake up call for the need

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Speaker 1: for a more transparent system. This is a story that

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Speaker 1: paved the way to what is now known as bioethics.

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Speaker 1: I'm your host, Lauren Aurora Hutchinson. I'm the director of

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Speaker 1: the Ideas Lab at the Johns Hopkins Berman Institute of Bioethics.

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Speaker 1: In this season a Playing God, we went behind the

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Speaker 1: scenes to discover how some of the most significant medical

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Speaker 1: innovations impacted people's lives and continued to whether it's saving

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Speaker 1: lives or creating babies, a new technology was usually waiting

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Speaker 1: in the wings, along with a multitude of ethical questions.

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Speaker 1: We looked at where we draw the line, should we

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Speaker 1: draw the line, what's right and what's wrong when it

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Speaker 1: comes to our bodies, And we turned to bioethicists to

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Speaker 1: answer these questions. But in this bonus prequel episode, we're

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Speaker 1: doing something different. We're going back in time to immerse

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Speaker 1: you in one of the most important foundational stories of

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Speaker 1: modern bioethics from Pushkin Industries and the Johns Hopkins Berman

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Speaker 1: Institute of Bioethics. This is playing God. By the nineteen fifties,

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Speaker 1: if someone had kidney disease, they could be surgically connected

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Speaker 1: to a machine called an artificial kidney, also known as

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Speaker 1: the dialysis machine. Dialysis at the time worked well for

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Speaker 1: anyone whose kidneys needed help for just a short while,

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Speaker 1: but people whose kidneys had failed needed ongoing dialysis for

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Speaker 1: life or they would die. Connecting to a dialysis machine

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Speaker 1: did a lot of damage to blood vessels, so there

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Speaker 1: were only so many sessions a patient could do. In

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Speaker 1: nineteen sixty, a young Seattle nephrologist named Belding Scribner decided

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Speaker 1: to do something about it. He designed a little U

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Speaker 1: shaped piece of hollow teflon called a shunt. It could

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Speaker 1: be left in a patient's arm or leg permanently to

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Speaker 1: use again and again to connect to a dialysis machine.

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Speaker 1: This meant chronic kidney disease would no longer be a

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Speaker 1: death sentence. I just want to pause here for a moment,

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Speaker 1: because even with the Scribner shunt, it wasn't possible to

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Speaker 1: treat everyone. So who should be granted access when there

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Speaker 1: isn't enough of something life saving to go around? This

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Speaker 1: question around the allocation of resources is one of the

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Speaker 1: most central questions in bioethics that's still being asked about

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Speaker 1: all sorts of things today. What's the best way, or rather,

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Speaker 1: what's the least bad way to resolve this kind of dilemma?

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Speaker 4: Well, here's what.

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Speaker 1: Happened in this case. In nineteen sixty two, the Seattle

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Speaker 1: Artificial Kidney Center opened at Swedish Hospital. Initially, the center

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Speaker 1: had just three machines and could only treat up to

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Speaker 1: nine patients. Each person selected would need to continue to

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Speaker 1: be treated for the rest of their life. At the time,

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Speaker 1: chronic kidney disease killed tens of thousands of people in

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Speaker 1: the US each year. Regular dialysis was their only shot

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Speaker 1: at staying alive. So how would the center choose which

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Speaker 1: patients would get a second chance at life? To begin?

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Speaker 1: Belding and the hospitals set up an initial screening process

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Speaker 1: to whittle down the thousands of patients to hundreds, and

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Speaker 1: in order to even be considered for a spot in

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Speaker 1: the first place, each candidate needed a referral from their doctor.

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Speaker 1: Rick says, we.

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Speaker 3: Don't know if they accepted referrals from black physicians, and

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Speaker 3: there were not many black physicians in the nineteen sixties,

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Speaker 3: which is part of what I argue is problematic about

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Speaker 3: the committee. You know, Seattle is still a city that

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Speaker 3: is highly racialized, highly segregated. It's not Alabama or Mississippi,

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Speaker 3: but there were still segregation in hospitals, which.

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Speaker 1: Of course had implications as to who would get referrals

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Speaker 1: to even be on the list. The center then had

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Speaker 1: specific criteria. Patients had to be between fifteen and forty

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Speaker 1: five years old. The hospital advised that children might not

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Speaker 1: be able to handle ongoing long term dialysis both mentally

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Speaker 1: and physically. Those of the right age then had to

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Speaker 1: show they could pay for three years of the treatment

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Speaker 1: upfront thirty thousand dollars the equivalent of three hundred thousand

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Speaker 1: dollars today, and they had to be able to access

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Speaker 1: the center twice a week.

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Speaker 3: Perhaps most problematic is they could not have underlying conditions,

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Speaker 3: so diabetes, hypertension, all of those things would disqualify you

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Speaker 3: from the possibility of chronic dialysis.

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Speaker 1: The medical advisory committee also interviewed the candidates to get

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Speaker 1: a sense of their psychological health.

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Speaker 3: So people who were emotionally unstable, who were poor, who

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Speaker 3: did not have certain kinds of jobs, who were unmarried,

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Speaker 3: who did not go to church were largely considered inherently

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Speaker 3: biologically flawed by the medical committee. Those were the individuals

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Speaker 3: who were not emotionally stable enough to deal with long

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Speaker 3: term dealysis.

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Speaker 1: The treatment center evaluated about fifty candidates for each available slot.

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Speaker 1: They would then whittle that number down and hand the

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Speaker 1: final decision over to the God Squad. The God squad

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Speaker 1: would then have to choose one person out of about

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Speaker 1: four candidates per slot. The people on the God squad

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Speaker 1: were not experts in kidney disease or dialysis. Only two

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Speaker 1: of them were medical professionals.

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Speaker 2: I am a banker, I am a surgeon, I am

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Speaker 2: a lawyer, I am a physician, I am a labor leader,

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Speaker 2: I am a housewife, I am a clergy many.

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Speaker 1: Belding, Scribner and his colleagues decided it was unfair to

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Speaker 1: burden physicians with making the final call. Their reason since

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Speaker 1: all of the candidates on their list would benefit from

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Speaker 1: the treatment and were deemed good candidates, the choice of

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Speaker 1: who to save was now really more of a social

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Speaker 1: one than a medical one. I can't help noticing where

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Speaker 1: they drew the line between this being a social decision

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Speaker 1: rather than a medical one, because to me, it seems

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Speaker 1: like so many of these factors were actually social anyway.

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Speaker 1: It was at this point they decided to turn it

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Speaker 1: over to the ordinary people of Seattle. It was their

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Speaker 1: job to evaluate these patients and determine who should live

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Speaker 1: and who should die.

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Speaker 3: There was a woman who was up for evaluation and

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Speaker 3: husband and sons said that she was no longer cleaning

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Speaker 3: the house. That was part of what they brought up

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Speaker 3: to evaluate her as to her worthiness of dialysis.

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Speaker 1: We'll be right back after the break. The God Squad's

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Speaker 1: official name was the Admissions and Policies Committee of the

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Speaker 1: Seattle Artificial Kidney Center at Swedish Hospital.

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Speaker 3: They, of course say that it represents a cross section

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Speaker 3: of the Seattle population. It was mostly men, mostly middle.

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Speaker 1: Clayer's administrators from the kidney center hand selected the God

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Speaker 1: Squad members. That's right, hand selected. The hospital gave the

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Speaker 1: committee an information packet on each candidate, with their medical records,

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Speaker 1: psychological evaluations, financial information, even letters of reference. One of

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Speaker 1: the doctors who briefed the committee later said, we told

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Speaker 1: them frankly, that there were no guidelines. They were on

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Speaker 1: their own. We really dumped it on them. The committee

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Speaker 1: decided to review every piece of biographical information they could

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Speaker 1: get their hands on. They also decided to enlist other

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Speaker 1: people to help them, a social worker and a psychologist.

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Speaker 1: What they were looking to determine was what they called

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Speaker 1: a person's social worth.

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Speaker 3: One of the criteria that the Patient Advisory Committee often

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Speaker 3: considered was the common good.

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Speaker 1: Rick says, if you read through the committee's records, you

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Speaker 1: can piece together what the members thought made someone worthy.

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Speaker 3: Being a white collar worker was better than being a

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Speaker 3: blue collar worker. A woman who was a known prostitute

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Speaker 3: was rejected for a woman who was a mother of four.

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Speaker 3: Another one that sticks out is a young man who

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Speaker 3: was considered to be, and this is the term that

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Speaker 3: they use, a never do or will a playboy, and

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Speaker 3: so he does not have the right temperament or morality,

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Speaker 3: then he's not worthy of theallises.

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Speaker 1: The committee members were kept anonymous, and their work happened

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Speaker 1: behind closed doors, But in nineteen sixty two, a prominent

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Speaker 1: reporter named Shana Alexander revealed their inner workings to the

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Speaker 1: world in a Life magazine article. Amazingly, all of the

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Speaker 1: committee members agreed to be interviewed as long as they

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Speaker 1: were not identified. The committee even re enacted one of

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Speaker 1: their first liberations so Shana could hear how they sounded

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Speaker 1: in action. Their conversations made it clear that to committee members,

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Speaker 1: what made someone worthy of saving was a matter of

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Speaker 1: personal opinion. We had voice actors read from the article.

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Speaker 5: If we are still looking for the men with the

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Speaker 5: highest potential of service to society, I think we must

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Speaker 5: consider that the chemist and the accountant have the finest

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Speaker 5: educational backgrounds of all five candidates.

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Speaker 6: How do the rest? Do you feel about number three,

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Speaker 6: the small businessman with three children. I'm impressed that this

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Speaker 6: doctor took special pains to mention this man as active

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Speaker 6: in church work. This is an indication to me of

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Speaker 6: character and moral strength.

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Speaker 7: For the children's sake, we've got to reckon with the

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Speaker 7: surviving parents' opportunity to remarry, and a woman with three

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Speaker 7: children has a better chance to find a new husband

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Speaker 7: than a very young widow with six children.

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Speaker 6: How can we possibly be sure of that?

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Speaker 1: Shanea's article not surprisingly caused outrage.

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Speaker 3: Lawyers at the time, you know, argue that it was

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Speaker 3: really just a way for physicians to avoid the responsibility

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Speaker 3: of making a difficult decision that they did not want

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Speaker 3: to make and that nobody wants to make.

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Speaker 1: Mostly, Rick says, people pointed out the obvious flaws with

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Speaker 1: a metric worthiness.

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Speaker 3: Someone who is, you know, an activist in the civil

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Speaker 3: rights movement. That's a social good, but it might not

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Speaker 3: fit within the ideals of what it is that they

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Speaker 3: think as a social good. So you could have a

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Speaker 3: respected business person who was still unethical in a number

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Speaker 3: of different ways.

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Speaker 1: In the end, the committee selected the first group of patients,

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Speaker 1: among them a physicist, an engineer, a car salesman, an

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Speaker 1: aircraft worker, and an oil company executive. By most accounts,

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Speaker 1: the God Squad kept meeting until nineteen seventy two. That year,

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Speaker 1: Congress passed legislation making dialysis available to everyone whose kidneys

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Speaker 1: have failed, but the committee lived on in public imagination.

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Speaker 1: Many people didn't get the life saving treatment they needed

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Speaker 1: because they were deemed less worthy. The God Squad were

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Speaker 1: people who just had to make up the rules as

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Speaker 1: they went along. There was no template yet for best

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Speaker 1: practices or ethical guidance in making these kinds of decisions.

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Speaker 4: They were starting from s, you know, and I think

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Speaker 4: that we have a much more robust literature. You know,

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Speaker 4: we have a history of bioethecal analysis to lean on now,

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Speaker 4: and of course we're still improving over time and how

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Speaker 4: we think about these things.

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Speaker 1: This is Kate Butler. She's a clinical neprologist based in Seattle,

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Speaker 1: and she says, what is key is to design a

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Speaker 1: system that's fair. But of course fairness can be understood

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Speaker 1: in lots of different ways.

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Speaker 4: Do we want to make the very best use of

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Speaker 4: resources in terms of saving the most lives in terms

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Speaker 4: of having the most life years lived? Do we want

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Speaker 4: to consider quality of life years lived? And if so,

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Speaker 4: who decides on quality? And or do we want to

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Speaker 4: make sure that we're allocating resources in a way that

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Speaker 4: feels equitable to us? And again, who is that us?

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Speaker 4: Who's making the decision about whether the system is equitable.

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Speaker 1: Kate told us that nowadays systems are based on ethical foundations.

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Speaker 1: For example, one way of doing things would be to

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Speaker 1: prioritize recipients who we expect to live the longest after

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Speaker 1: a transplant, which would be a utilitarian approach. Or you

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Speaker 1: could use a lottery so that everyone on the list

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Speaker 1: gets an equal chance of a transplant, which would be

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Speaker 1: based on the principle of equality. I mean, which one

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Speaker 1: do you think would be most fair? Kate gave an

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Speaker 1: example the National Weight List for kidneys, which is a

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Speaker 1: modified version of waiting until your number is.

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Speaker 4: Called, and that process has been worked out over decades

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Speaker 4: as a collaboration between clinicians, bioethicists, the community by way

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Speaker 4: of community forums.

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Speaker 1: There's an organization that monitors the systems to see if

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Speaker 1: it's working the way it's supposed to. It's called the

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Speaker 1: United Network for organ Sharing. In twenty fourteen, they discovered

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Speaker 1: a flaw. The waiting list wasn't accounting for some groups

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Speaker 1: of people, mainly people of color, having a harder time

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Speaker 1: getting on the list in the first place. In bioethics,

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Speaker 1: equity is a key principle. It's important to account for

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Speaker 1: disadvantage or underrepresentation. So they made a change.

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Speaker 4: There was an intentional effort to change the WEIGHTLISS criteria

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Speaker 4: to give you retroactive time for time since you started

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Speaker 4: on dialysis, so people would get points for the time

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Speaker 4: spent on the witlist or how long they had been

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Speaker 4: on dialysis, whichever is longer.

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Speaker 1: The change was apparent within months. The system still isn't perfect,

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Speaker 1: but Kate says, as an example of how the field

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Speaker 1: of bioethics has evolved since the time of the God Squad.

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Speaker 4: There's more to medicine than just clinical analysis of individual

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Speaker 4: cases that considering the bioethical implications of these decisions was

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Speaker 4: necessary and important. I think that's why people refer to

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Speaker 4: this example as the birth of bioethics today.

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Speaker 1: It's part of the process to consider ethics in medical advance.

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Speaker 4: Any situation in which you have resource scarcity for something

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Speaker 4: so consequential as healthcare, there's going to be tragedy, right

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Speaker 4: There's going to be someone who doesn't get the care

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Speaker 4: you want for them. We're not going to be able

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Speaker 4: to design a perfect system.

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Speaker 1: As we have heard from this series, the landscape is

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Speaker 1: ever shifting. Every time there's a new medical innovation, there's

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Speaker 1: a whole new set of ethical questions. If you've enjoyed

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Speaker 1: playing God, then we're going to have plenty more stories

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Speaker 1: like this coming out of the Ideas Lab at the

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Speaker 1: Johns Hopkins Berman Institute of Bioethics. Playing God is a

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Speaker 1: co production the Pushkin Industries and the Johns Hopkins Berman

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Speaker 1: Institute of Bioethics. Special thanks to our guests in this episode,

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Speaker 1: Rick Mozelle and Kate Butler. Emily Vaughan is our lead producer.

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Speaker 1: Production support from Sophie Crane and Lucy Sullivan. Our editors

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Speaker 1: are Karen Chakerjee and Kate Parkinson Morgan. Theme music and

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Speaker 1: mixing by Echo Mountain, Engineering support from Sarah Brugare and

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Speaker 1: Amanda Kaiwang. Show art by Sean Carney, fact checking by

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Speaker 1: David jar and Arthur Gompertz. Our executive producer is Justine

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Speaker 1: Lang at the Johns Hopkins Berman Institute of Bioethics. Our

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Speaker 1: executive producers are Jeffrey Kahan and Anna Mastriani, working with

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Speaker 1: Amelia Hood and with support from Susan Snead, Aaron Henkin,

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Speaker 1: Abigail Brickler, Kim bikermer Anna Oakes, and Jamie Smith. Funding

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Speaker 1: provided by the green Wall Foundation. Special thanks to voice

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Speaker 1: coach Vicky Merrick. This is our last episode, so we'd

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Speaker 1: like to thank some of the many people at Pushkin

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Speaker 1: who've supported this show throughout the season, including Jacob Weisber,

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Speaker 1: Heather Fame, John Snarz, Letal Malad, Greta Cohne, Carl Migliori,

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Speaker 1: Jasmine Perez, Eric Sandler, Jordan mcmill Isabella Navarez, Nicole op

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Speaker 1: Den Bosch, Maya Kanig, Jake Flanagan, Owen Miller, David Glover,

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Speaker 1: Nina Lawrence, Mia LaBelle, and Ian Petsa. To learn more

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Speaker 1: about Bioethics and the issues presented in this series, please

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Speaker 1: visit Bioethics dot jhu dot edu forward, slash Playing God.

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Speaker 1: I'm Laurena Rora Hutchinson. Thanks for listening to Playing God.

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Speaker 1: If you're interested in learning more about these stories and discussions,

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Speaker 1: visit the Berman Institute's guide to the podcast at Bioethics

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Speaker 1: dot j u dot ed u, slash Playing God, or

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Speaker 1: find us on social media at Burman Institute