Speaker 1: It went for a regular medical checkup, which as being
Speaker 1: a doctor, of course, I hadn't done for ten years,
Speaker 1: and my blood tests were not good.
Speaker 2: In two thousand and four, Sally Setel discovered her kidneys
Speaker 2: were failing. It had come out of the blue, and
Speaker 2: her doctor said she would eventually need a transplant.
Speaker 1: So it was a bit of a race against time
Speaker 1: in a way. You know, how long would I feel
Speaker 1: fine before having to go on dialysis? And during that period,
Speaker 1: which turned out to be about eighteen months, I frantically
Speaker 1: looked for someone to give me a body part.
Speaker 2: To get a new kidney. Sally had two choices, add
Speaker 2: her name to the national wait list for kidneys from
Speaker 2: deceased donors, or ask her living family members and friends
Speaker 2: if they'd be willing to give her one of their own.
Speaker 2: But Sally knew that wouldn't be easy. Not only would
Speaker 2: she need someone to agree to donate their kidney, that
Speaker 2: person would also have to be a match. So she
Speaker 2: started searching, but she was also added to the list.
Speaker 2: At that point, there were about sixty thousand people ahead
Speaker 2: of her. It would take years.
Speaker 1: You know, Initially I kind of wanted to buy a
Speaker 1: kidney to be honest, because I wanted to avoid what
Speaker 1: I thought could be, you know, really complicated relationships.
Speaker 2: Buying a kidney, however, is against the law in the
Speaker 2: United States and nearly everywhere else in the world, but
Speaker 2: black markets do exist.
Speaker 1: There are so many, so many desperate people just frankly
Speaker 1: roaming the world looking for someone to save their life.
Speaker 1: And obviously these are a people who have funds, you know,
Speaker 1: can engage in this kind of thing, but you know,
Speaker 1: it's our show.
Speaker 2: Sally didn't want to be part of that, so all
Speaker 2: she could do was convince someone to donate to her,
Speaker 2: while she also waited her turn on the deceased donation list.
Speaker 1: So that was highly frustrate and by that time I
Speaker 1: wasn't feeling very well.
Speaker 2: Sally was still healthy enough to avoid dialysis, but she
Speaker 2: was declining. She didn't have family she could ask, so
Speaker 2: she started talking with her friends. Some seemed eager to help,
Speaker 2: but then spoke to their families and changed their minds.
Speaker 2: Others got cold feet. She connected with the Donut online
Speaker 2: and it seemed promising, but eventually fell through.
Speaker 1: We actually even had a date, as they say, to
Speaker 1: have the surgeries, and then he just totally disappeared.
Speaker 2: One day, she got an email from a friend with
Speaker 2: the subject line serious offer. Finally this one was real.
Speaker 2: They underwent the testing and it was a good match.
Speaker 2: She got the transplant and it went well. Sally found
Speaker 2: that she wasn't burdened by feelings of indebtedness to her
Speaker 2: donor friend. She lived in decent health for a decade,
Speaker 2: but then faced another blow.
Speaker 1: If you get a living kit, neither supposed to last
Speaker 1: between fifteen to twenty years. Unfortunately mine didn't. But you know,
Speaker 1: I had another friend who had worked with me at
Speaker 1: the time I was going through this ordeal of trying
Speaker 1: to get a kidney the first time. She was younger
Speaker 1: and wanted to have kids first, which she said, if
Speaker 1: you ever need another one, you know, I'll keep mine
Speaker 1: warm and you can ask me.
Speaker 2: In twenty sixteen, Sally took her up on that offer.
Speaker 2: She had a second kidney transplant. Today, Sally is doing well,
Speaker 2: but she knows tens of thousands of others with renal
Speaker 2: disease and not as fortunate. She's since become an advocate
Speaker 2: for encouraging living organ donation, and she'd liked to see
Speaker 2: a significant change happen for living organ donors. She thinks
Speaker 2: they should be compensated.
Speaker 1: You know, people talk about an organ shortage, and that
Speaker 1: is true, but I almost think about it in terms
Speaker 1: of an altruism shortage.
Speaker 3: And so.
Speaker 1: What I believe we should do when I'm not alone,
Speaker 1: I am the more outspoken folks I think, but I'm
Speaker 1: certainly not alone in believing that we should reward people
Speaker 1: who donate kidneys so that others will be motivated to
Speaker 1: do the same. And you know there are money exchanges
Speaker 1: for other bodily products. You know, we pay for plasma,
Speaker 1: We pay for eggs and sperm and even bone marrow. Now,
Speaker 1: and why shouldn't we offer people compensation or a reward
Speaker 1: for giving a kidney and saving someone's life and saving
Speaker 1: someone's mom, sister, spouse. You know, why shouldn't we do that?
Speaker 2: I'm Lauren Aurora Hutchinson. I'm the director of the Ideas
Speaker 2: Lab at the Johns Hopkins Berman Institute of Bioethics. This season,
Speaker 2: I'm going behind the scenes to discover how some of
Speaker 2: the most significant medical innovations have impacted people's lives and
Speaker 2: continue to whether it's redefining death or creating babies. A
Speaker 2: new technology is usually waiting in the wings, along with
Speaker 2: a whole entourage of ethical questions on today's show, is
Speaker 2: it ever ethical to compensate someone for a kidney? And
Speaker 2: why do we allow the sale of some body parts
Speaker 2: and not others from Pushkin Industries and the Johns Hopkins
Speaker 2: Berman Institute of Bioethics. This is playing god. Sally Stel
Speaker 2: has been through quite a lot since the day her
Speaker 2: doctor's discovered her kidneys were mysteriously failing and the prospect
Speaker 2: of needing a third is very real. But she's also
Speaker 2: the first to say she's been lucky, too successful transponts.
Speaker 2: She knows that for many others the outcomes are not
Speaker 2: as good, and that many are waiting for a kidney
Speaker 2: they might never receive. Sally ended our conversation with a proposal,
Speaker 2: since many people people are in dire need of a kidney,
Speaker 2: and most healthy people can donate one kidney, we should
Speaker 2: encourage more people to donate by compensating them, Which leaves
Speaker 2: me wondering would it be ethically acceptable to use money
Speaker 2: or other forms of compensation to incentifize living donors instead
Speaker 2: of prohibiting it.
Speaker 4: You know, we have been debating that question for a
Speaker 4: really very long time.
Speaker 2: This again is my colleague at the Berman Institute, Jeffrey Kahn.
Speaker 4: There's a big need and there's just not enough supply.
Speaker 4: The data is that as many as one in seven
Speaker 4: adults in the United States live with renal disease as
Speaker 4: kidney disease, and if someone needs a kidney transplant, they
Speaker 4: generally get added to a national wait list for a
Speaker 4: kidney from somebody who has died, a deceased organ donor,
Speaker 4: we call that, and so that puts patients like Sally
Speaker 4: in a really tough situation. No one wants to stay
Speaker 4: on dialysis, although that's really important to say. Dialysis is
Speaker 4: the technology that allows people to wait. That technology has
Speaker 4: gotten much better over the decade since it was first invented.
Speaker 4: But it's time intensive, it is not pleasant, Your quality
Speaker 4: of life is not great.
Speaker 2: So how did that policy come to be? What's the
Speaker 2: history behind it.
Speaker 4: It's a kind of interesting history, actually, and it goes
Speaker 4: back to nineteen eighty four when a law called the
Speaker 4: National Organ Transplant Act NODA is its acronym, and that's
Speaker 4: how it's referred to, was passed by Congress and that
Speaker 4: law makes it illegal in the United States to buy
Speaker 4: and sell organs, really to exchange anything of value in
Speaker 4: return for an organ. And it was driven by a
Speaker 4: guy who tried to create what we would think of
Speaker 4: as an eBay for kidneys before eBay existed. He was
Speaker 4: a physician who had lost his license, so he was
Speaker 4: kind of a sketchy guy, but he found a way
Speaker 4: to make some money by being the mental man and
Speaker 4: brokering kidneys from people who you could then sell. That
Speaker 4: was a driver, largely the driver in fact, that led
Speaker 4: to the passage of the National Organ Transplant Act, And
Speaker 4: so ever since nineteen eighty four we've had this law
Speaker 4: in place which says you may not exchange anything of
Speaker 4: value in return for a solid organ. Now, solid organs
Speaker 4: are kidneys, livers, hearts, lungs, as opposed to bone marrow,
Speaker 4: which is not a solid organ. But that's the distinction
Speaker 4: that is in the law.
Speaker 2: Can you talk a little bit about that distinction. I
Speaker 2: know we already sell somebody parts like sperm, egg and plasma,
Speaker 2: but ethically what makes them different from a solid organ
Speaker 2: like a kidney.
Speaker 4: Well, it's a good question to ask. So you could say, well,
Speaker 4: you know, we certainly regenerate sperm. There's no shortage of that,
Speaker 4: and women have a certain limited but large number of
Speaker 4: eggs from the time that they're born and bone marrow
Speaker 4: and plasma regenerate. But you know, the truth is our
Speaker 4: public policy is often inconsistent, and that's just the case here.
Speaker 4: And so you know, the law was crafted in reaction
Speaker 4: to a particular situation. Somebody was trying to buy and
Speaker 4: sell kidneys, and so they passed the law to prevent
Speaker 4: what they thought was an immoral, unethical, illegal market. And
Speaker 4: so that's how the law was crafted. And I think
Speaker 4: it wasn't as far thinking as the conversation we're having
Speaker 4: would imply.
Speaker 2: So it's more of a legal distinction than an ethical one.
Speaker 2: At the moment, it sounds like.
Speaker 4: Well, and the law, you know, we hope tracks to ethics,
Speaker 4: but it doesn't always track perfectly to ethics, I guess,
Speaker 4: is the way I would say it. But really interestingly,
Speaker 4: there are innovations or ways that people are going about
Speaker 4: getting a kidney that start to feel a lot like compensation,
Speaker 4: but technically haven't been considered that for the purposes of
Speaker 4: noda of the law.
Speaker 2: So what is considered ethically acceptable today that doesn't involve
Speaker 2: a direct exchange of money between people.
Speaker 4: Right, So, there's now an online site called Matching donors
Speaker 4: dot com where people like Sally put their information on
Speaker 4: the site I need a kidney. Here's a little bit
Speaker 4: about me, usually as a photograph, some background, and then
Speaker 4: people who are willing to be donors can go to
Speaker 4: that site and effectively shop for somebody that they want
Speaker 4: to give their kidney to. What's a concern about that
Speaker 4: is there's nothing that stops people from meeting this way
Speaker 4: to make agreements about what they will receive in return
Speaker 4: for being a donor. So that's one option. There are
Speaker 4: two other ways that people can also access kidneys through
Speaker 4: living donation that also start to feel like something being
Speaker 4: exchanged that's valuable that isn't so far at least been
Speaker 4: deemed compensation. One is something called daisy chain donations, where
Speaker 4: if you're willing to be a donor to your loved
Speaker 4: one or your friend, but you're the wrong blood type,
Speaker 4: you can give to somebody else who is the right
Speaker 4: blood type, and then another donor can give to someone who,
Speaker 4: again they're not the right blood type for their loved one,
Speaker 4: but they give to somebody else, and so on and
Speaker 4: so on until somebody gives to your loved one in
Speaker 4: a kind of circle. So you're not getting money as
Speaker 4: a donor, but what you're getting is a kidney that
Speaker 4: goes to the person you care about, even if you
Speaker 4: can't be the person who's donating directly. So that isn't
Speaker 4: called compensation, but it certainly feels like something of value
Speaker 4: going to someone you care about in return for something
Speaker 4: that you're giving. And then the third way is through
Speaker 4: a voucher program. So if you're willing to be a
Speaker 4: living donor, you get a voucher that you are allowed
Speaker 4: to give to somebody else who will then go to
Speaker 4: the top of the line for a kidney donation should
Speaker 4: they ever need it. It's an opportunity to identify somebody
Speaker 4: who you think, at some point in their life may
Speaker 4: need a kidney transplant, but of course maybe never will,
Speaker 4: so it's a voucher that may never get redeemed, but
Speaker 4: if if it's needed, it allows the person who holds
Speaker 4: it to go to the front of the line. So
Speaker 4: you're being given something a voucher for a kidney transplant,
Speaker 4: effectively in return for your being a donor. A voucher
Speaker 4: for a kidney transplant certainly feels like something of value,
Speaker 4: even though it isn't money into your bank account. So
Speaker 4: there's all these innovations that people are undertaking out of
Speaker 4: frankly strong need, almost desperation to find enough kidneys to
Speaker 4: transplant all these people who are waiting.
Speaker 2: So Sally, who we heard from earlier in this episode,
Speaker 2: has seen firsthand what donors go through in order to
Speaker 2: donate their kidneys, and she believes strongly that they should
Speaker 2: be financially compensated. So could you talk a bit more
Speaker 2: about the main reasons why some ethicists think that any
Speaker 2: kind of compensation for organs is a concern, and what
Speaker 2: bad situations they're worried about happening.
Speaker 4: Sure, and I would put myself into the category of
Speaker 4: emphicists who are concerned about this. And the issues really
Speaker 4: fall into th remain categories. One is exploitation, the second
Speaker 4: is commodification, so turning human body parts into a commodity,
Speaker 4: and the third is the impact on altruistic donation. So
Speaker 4: taking exploitation first, there is a real concern and I
Speaker 4: think everybody recognizes this that when people are desperate and
Speaker 4: need money, they will do things that maybe are against
Speaker 4: their better judgment. So that's the worry, and that helps
Speaker 4: us bridge to the second point, which is about commodification.
Speaker 4: We're buying and selling parts of human bodies and that
Speaker 4: feels wrong. It just doesn't seem like it's an appropriate
Speaker 4: thing to take a piece of a person's body and
Speaker 4: sell it. So that's problem or concern number two, and
Speaker 4: then concern number three is are sort of a hard
Speaker 4: one to assess, but that is a concern that if
Speaker 4: we pay people to be living donors, that there'll be
Speaker 4: a negative impact on the deceased donor population, that people
Speaker 4: just be less willing to be altruistic donors after they've died,
Speaker 4: or even when they are alive, if there's a market,
Speaker 4: they'll be turned off.
Speaker 2: Thanks so much, Jeff, great to talk with you today.
Speaker 4: Thank you, Lauren. Great to talk to you as well.
Speaker 2: We're going to take a short break. When we return,
Speaker 2: we'll hear from Dr Mario Matchis, a behavioral economist at
Speaker 2: Johns Hopkins University, about why we should allow financial compensation
Speaker 2: for kidney donation, and to walk us through his proposal
Speaker 2: for what a system of reimbursement and incentives could actually
Speaker 2: look like. Playing God will be right back in this episode,
Speaker 2: So far, we've seen how common chronic kidney diseases and
Speaker 2: that so many Americans are on dialysis, and there's an
Speaker 2: interesting economic perspective on whether we should allow financial incentives
Speaker 2: for living kidney don't.
Speaker 3: So the debate about compensating kidney donors is often polarized,
Speaker 3: with two sides arguing for extreme solutions or policies.
Speaker 2: Doctor Maria Matches is a behavioral economist at Johns Hopkins
Speaker 2: University and often works on what people call repugnant transactions.
Speaker 3: A repugnant transaction is a transaction where you have people
Speaker 3: who would like to engage in an exchange, like a
Speaker 3: buyer and a seller, but where third parties object to
Speaker 3: the transaction, usually for ethical moral reasons, and they wish
Speaker 3: to prohibit that transaction from taking place.
Speaker 2: Mario says he has seen two sides of the debate
Speaker 2: about paying kidney donors.
Speaker 3: On the one hand, a total prohibitions of money exchanges,
Speaker 3: and on the other hand, like a free market where
Speaker 3: individuals can buy and sell organs. Now between these two
Speaker 3: and this is not, in my view, a very productive
Speaker 3: way to have the conversation. There are many intermediate solutions
Speaker 3: between these two extremes. One solution is to compensate donors,
Speaker 3: reinbursing them for the costs that they incur. Another type
Speaker 3: of cost is the cost of undergoing the surgery, the
Speaker 3: risk implied in you know, undergoing a major surgery. There
Speaker 3: are also sort of, you know, the psychic costs of
Speaker 3: the anxiety implied in undergoing a surgery that should be
Speaker 3: taken into account when computing the total costs for a
Speaker 3: living person to donate a kidney. And this policy proposal
Speaker 3: is that removing these incentives to kidney donors might lead
Speaker 3: to an increase in kidney donations. Now, the idea that
Speaker 3: the act of donating a kidney should be financially neutral
Speaker 3: for the don or, that it should not result in
Speaker 3: net costs for the don or, that idea is not controversial.
Speaker 3: Like ethically, ethically, there's broad support for compensating donors for costs.
Speaker 3: Where there is less agreement is exactly in what types
Speaker 3: of costs should be reinborseed and what types of costs
Speaker 3: should not be reinborsed. For example, the idea of reinborsing
Speaker 3: the cost associated with risk and anxiety. There is much
Speaker 3: less agreement on that because that is more difficult to
Speaker 3: quantify it doesn't really correspond to an out of pocket expenditure,
Speaker 3: so there is a little less agreement on that. But
Speaker 3: my sense is that a policy that would reinborse as
Speaker 3: many costs as possible would be worthwid while policy to pursue.
Speaker 2: In your policy proposal, you talk about eliminating all financial
Speaker 2: disincentives for kidney donation, but do you think it would
Speaker 2: ever be appropriate to go a step further and create
Speaker 2: financial incentives?
Speaker 3: So I personally am in favor of introducing financial incentives
Speaker 3: that go beyond purely reinforcing donors for their expensive but
Speaker 3: you know, different people have different views about that based
Speaker 3: on their own, you know, personal or ethical values. I
Speaker 3: think there's value in having a discussion and looking at
Speaker 3: the evidence and understanding, you know, people's preferences, people's attitudes
Speaker 3: about these issues. And I think that the conversation that
Speaker 3: we should have is how do we create a system
Speaker 3: with incentives that can lead to additional donations while mitigating
Speaker 3: or possibly eliminating most of the of the ethical concerns
Speaker 3: that people have. I think that such a system can
Speaker 3: be designed, and that should be the goal.
Speaker 2: So we know that you've done public opinion research to
Speaker 2: figure out what people think about compensation. And from that research,
Speaker 2: would you say that Americans are okay with compensation for
Speaker 2: organ donation.
Speaker 3: From my research, it would appear that a sufficient majority
Speaker 3: of Americans, in sixty seventy percent, would be in favor
Speaker 3: of a system that compensates donors. They would not be
Speaker 3: in favors of a free market. They would not be
Speaker 3: in favor of a system in which reach individuals would
Speaker 3: be able to obtain a life saving kidney whereas four
Speaker 3: individuals will not. But they would be in favor of
Speaker 3: a system in which organ donors get compensated and an intermediary,
Speaker 3: ideally a government agency would allocate the result in organs
Speaker 3: in a fair way among patients in need according to
Speaker 3: the waiting least according to medical criteria. Cash compensation would
Speaker 3: be preferred things like, you know, refundable tax credits, or
Speaker 3: contributions to a retirement account, or contributions to a college fund.
Speaker 2: And what do you think about dialysis? How does the
Speaker 2: cost of dialysis play a role in how we should
Speaker 2: think about whether we should pay a living kidney donuts.
Speaker 3: Dialysis is very expensive. It's covered by Medicare, but it's
Speaker 3: a very, very expensive procedure, and it also leads to
Speaker 3: lower quality of life because it's cumbersome on patients, and
Speaker 3: so it's not ideal from both an economic point of
Speaker 3: view because it's much more expensive than a transplant. All
Speaker 3: things considered, financially, a kidney transplant saves money to the
Speaker 3: health system, to Medicare. In particular, there are estimates that
Speaker 3: indicate that every kidney transplant saves US tax payers about
Speaker 3: one hundred and fifty thousand dollars over all. So not
Speaker 3: only kidney transplants are better medically for patients, but they
Speaker 3: are also economically better for for Medicare and for and
Speaker 3: for tax payers. So we society should do everything we
Speaker 3: can to increase the number of kidney transplants that can
Speaker 3: take place. With society, we should sit down and think
Speaker 3: about how to design a system that exploits the power
Speaker 3: of incentives to obtain more donations and to perform more
Speaker 3: transplants and save more lives by designing the system in
Speaker 3: a way that is ethically acceptable. That debate has started
Speaker 3: to happen, but more needs to be done.
Speaker 2: Okay, well, thank you so much for joining us today.
Speaker 2: I really enjoyed this conversation and I really appreciate your time.
Speaker 3: Thank you, it was a great talking with you.
Speaker 2: As for Sally, she's doing well. She knows she will
Speaker 2: likely need another kidney at some point, but for now
Speaker 2: she's advocating for a system of donation incentives, a system
Speaker 2: that she thinks will not only help her, but thousands
Speaker 2: of others in need of an organ.
Speaker 1: The one person who takes the risk, meaning an operation,
Speaker 1: who gives a thing of value, the kidney, they're the
Speaker 1: one person who doesn't get paid. And the entire edifice
Speaker 1: of organ transplantation. You know, the hospital gets paid as
Speaker 1: it should, the surgeons get paid, the nurses, the O
Speaker 1: R rental, it's all paid. Money makes this happen. But
Speaker 1: the only person who gets nothing is the person who
Speaker 1: takes the risk and provides the organ. And you know,
Speaker 1: why shouldn't they, especially if this will save could save
Speaker 1: thousands of lives.
Speaker 2: Next time on playing God And.
Speaker 1: I just remember laying there and watching the lights above
Speaker 1: me as we're walking down the hallway, and the first
Speaker 1: thing I said.
Speaker 2: Was do I have a uterus?
Speaker 1: And the nurse who was pushing me look down and
Speaker 1: they smiled and they're like, you have a uterus?
Speaker 2: In twenty thirteen, the first uterus transplant to result in
Speaker 2: a live baby being born took place in Sweden. Uterus
Speaker 2: transplants can offer a life changing opportunity to individuals with
Speaker 2: certain types of infertility, but when is it ethical to
Speaker 2: transplant non life saving organs and what are the additional
Speaker 2: ethical issues when a transplant becomes a reproductive technology. Many
Speaker 2: thanks to our guests in this episode, Sally Settel and
Speaker 2: Mario Mutchus. Playing God is a co production of Pushkin
Speaker 2: Industries and the Johns Hopkins Berman Institute of Bioethics. Emily
Speaker 2: Vaughan is our lead producer. This episode was also produced
Speaker 2: by Sophie Crane and Lucy Sullivan. Our editors are Karen
Speaker 2: Chakerjee and Kate Parkinson Morgan. Theme music and mixing by
Speaker 2: Echo Mountain Engineering support from Sarah Bruguerre and Amanda Kaiwang.
Speaker 2: Show art by Sean Krney, fact checking by David jar
Speaker 2: and Arthur Gompertz. Our executive producer is Justine Lang at
Speaker 2: the Johns Hopkins Berman Institute of Bioethics. Our executive producers
Speaker 2: are Jeffrey Kahan and Anna Mastriani. Working with a Melia Hood.
Speaker 2: Funding provided by the Greenwall Foundation. I'm Laurena Rura Hutchinson.
Speaker 2: Come back next week for more Playing God. Generous support
Speaker 2: for Playing God is provided by the Greenwall Foundation, making
Speaker 2: bioethics integral to healthcare policy and research. Learn Moore at
Speaker 2: Greenwall dot org