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Life-and-death dilemmas. New medical technologies. Controversial treatments. In playing god? we hear from the patients whose lives were transformed—and sometimes saved—by medical innovations and the bioethicists who help guide complex decisions.
Ventilators can keep critically ill people alive, but when is it acceptable to turn the machines off? Organ transplants save lives, but when demand outpaces supply, how do we decide who gets them? Novel reproductive technologies can help people have babies in ways that are far beyond what nature allows. So, when should these “Brave New World” technologies be introduced, and who should control them?
playing god? is a production of the Berman Institute of Bioethics at Johns Hopkins University, with generous support from The Greenwall Foundation. New episodes drop every Tuesday.
The Berman Institute has created a guide for each episode where you can learn more about the guests, the history, and the ethics issues at: bioethics.jhu.edu/playing-god
00:00:03
Speaker 1: It went for a regular medical checkup, which as being a doctor, of course, I hadn't done for ten years, and my blood tests were not good.
00:00:13
Speaker 2: In two thousand and four, Sally Setel discovered her kidneys were failing. It had come out of the blue, and her doctor said she would eventually need a transplant.
00:00:23
Speaker 1: So it was a bit of a race against time in a way. You know, how long would I feel fine before having to go on dialysis? And during that period, which turned out to be about eighteen months, I frantically looked for someone to give me a body part.
00:00:38
Speaker 2: To get a new kidney. Sally had two choices, add her name to the national wait list for kidneys from deceased donors, or ask her living family members and friends if they'd be willing to give her one of their own. But Sally knew that wouldn't be easy. Not only would she need someone to agree to donate their kidney, that person would also have to be a match. So she started searching, but she was also added to the list. At that point, there were about sixty thousand people ahead of her. It would take years.
00:01:12
Speaker 1: You know, Initially I kind of wanted to buy a kidney to be honest, because I wanted to avoid what I thought could be, you know, really complicated relationships.
00:01:23
Speaker 2: Buying a kidney, however, is against the law in the United States and nearly everywhere else in the world, but black markets do exist.
00:01:32
Speaker 1: There are so many, so many desperate people just frankly roaming the world looking for someone to save their life. And obviously these are a people who have funds, you know, can engage in this kind of thing, but you know, it's our show.
00:01:48
Speaker 2: Sally didn't want to be part of that, so all she could do was convince someone to donate to her, while she also waited her turn on the deceased donation list.
00:01:58
Speaker 1: So that was highly frustrate and by that time I wasn't feeling very well.
00:02:03
Speaker 2: Sally was still healthy enough to avoid dialysis, but she was declining. She didn't have family she could ask, so she started talking with her friends. Some seemed eager to help, but then spoke to their families and changed their minds. Others got cold feet. She connected with the Donut online and it seemed promising, but eventually fell through.
00:02:25
Speaker 1: We actually even had a date, as they say, to have the surgeries, and then he just totally disappeared.
00:02:34
Speaker 2: One day, she got an email from a friend with the subject line serious offer. Finally this one was real. They underwent the testing and it was a good match. She got the transplant and it went well. Sally found that she wasn't burdened by feelings of indebtedness to her donor friend. She lived in decent health for a decade, but then faced another blow.
00:02:58
Speaker 1: If you get a living kit, neither supposed to last between fifteen to twenty years. Unfortunately mine didn't. But you know, I had another friend who had worked with me at the time I was going through this ordeal of trying to get a kidney the first time. She was younger and wanted to have kids first, which she said, if you ever need another one, you know, I'll keep mine warm and you can ask me.
00:03:24
Speaker 2: In twenty sixteen, Sally took her up on that offer. She had a second kidney transplant. Today, Sally is doing well, but she knows tens of thousands of others with renal disease and not as fortunate. She's since become an advocate for encouraging living organ donation, and she'd liked to see a significant change happen for living organ donors. She thinks they should be compensated.
00:03:48
Speaker 1: You know, people talk about an organ shortage, and that is true, but I almost think about it in terms of an altruism shortage.
00:03:56
Speaker 3: And so.
00:03:58
Speaker 1: What I believe we should do when I'm not alone, I am the more outspoken folks I think, but I'm certainly not alone in believing that we should reward people who donate kidneys so that others will be motivated to do the same. And you know there are money exchanges for other bodily products. You know, we pay for plasma, We pay for eggs and sperm and even bone marrow. Now, and why shouldn't we offer people compensation or a reward for giving a kidney and saving someone's life and saving someone's mom, sister, spouse. You know, why shouldn't we do that?
00:04:42
Speaker 2: I'm Lauren Aurora Hutchinson. I'm the director of the Ideas Lab at the Johns Hopkins Berman Institute of Bioethics. This season, I'm going behind the scenes to discover how some of the most significant medical innovations have impacted people's lives and continue to whether it's redefining death or creating babies. A new technology is usually waiting in the wings, along with a whole entourage of ethical questions on today's show, is it ever ethical to compensate someone for a kidney? And why do we allow the sale of some body parts and not others from Pushkin Industries and the Johns Hopkins Berman Institute of Bioethics. This is playing god. Sally Stel has been through quite a lot since the day her doctor's discovered her kidneys were mysteriously failing and the prospect of needing a third is very real. But she's also the first to say she's been lucky, too successful transponts. She knows that for many others the outcomes are not as good, and that many are waiting for a kidney they might never receive. Sally ended our conversation with a proposal, since many people people are in dire need of a kidney, and most healthy people can donate one kidney, we should encourage more people to donate by compensating them, Which leaves me wondering would it be ethically acceptable to use money or other forms of compensation to incentifize living donors instead of prohibiting it.
00:06:20
Speaker 4: You know, we have been debating that question for a really very long time.
00:06:25
Speaker 2: This again is my colleague at the Berman Institute, Jeffrey Kahn.
00:06:29
Speaker 4: There's a big need and there's just not enough supply. The data is that as many as one in seven adults in the United States live with renal disease as kidney disease, and if someone needs a kidney transplant, they generally get added to a national wait list for a kidney from somebody who has died, a deceased organ donor, we call that, and so that puts patients like Sally in a really tough situation. No one wants to stay on dialysis, although that's really important to say. Dialysis is the technology that allows people to wait. That technology has gotten much better over the decade since it was first invented. But it's time intensive, it is not pleasant, Your quality of life is not great.
00:07:14
Speaker 2: So how did that policy come to be? What's the history behind it.
00:07:18
Speaker 4: It's a kind of interesting history, actually, and it goes back to nineteen eighty four when a law called the National Organ Transplant Act NODA is its acronym, and that's how it's referred to, was passed by Congress and that law makes it illegal in the United States to buy and sell organs, really to exchange anything of value in return for an organ. And it was driven by a guy who tried to create what we would think of as an eBay for kidneys before eBay existed. He was a physician who had lost his license, so he was kind of a sketchy guy, but he found a way to make some money by being the mental man and brokering kidneys from people who you could then sell. That was a driver, largely the driver in fact, that led to the passage of the National Organ Transplant Act, And so ever since nineteen eighty four we've had this law in place which says you may not exchange anything of value in return for a solid organ. Now, solid organs are kidneys, livers, hearts, lungs, as opposed to bone marrow, which is not a solid organ. But that's the distinction that is in the law.
00:08:30
Speaker 2: Can you talk a little bit about that distinction. I know we already sell somebody parts like sperm, egg and plasma, but ethically what makes them different from a solid organ like a kidney.
00:08:41
Speaker 4: Well, it's a good question to ask. So you could say, well, you know, we certainly regenerate sperm. There's no shortage of that, and women have a certain limited but large number of eggs from the time that they're born and bone marrow and plasma regenerate. But you know, the truth is our public policy is often inconsistent, and that's just the case here. And so you know, the law was crafted in reaction to a particular situation. Somebody was trying to buy and sell kidneys, and so they passed the law to prevent what they thought was an immoral, unethical, illegal market. And so that's how the law was crafted. And I think it wasn't as far thinking as the conversation we're having would imply.
00:09:27
Speaker 2: So it's more of a legal distinction than an ethical one. At the moment, it sounds like.
00:09:31
Speaker 4: Well, and the law, you know, we hope tracks to ethics, but it doesn't always track perfectly to ethics, I guess, is the way I would say it. But really interestingly, there are innovations or ways that people are going about getting a kidney that start to feel a lot like compensation, but technically haven't been considered that for the purposes of noda of the law.
00:09:53
Speaker 2: So what is considered ethically acceptable today that doesn't involve a direct exchange of money between people.
00:10:00
Speaker 4: Right, So, there's now an online site called Matching donors dot com where people like Sally put their information on the site I need a kidney. Here's a little bit about me, usually as a photograph, some background, and then people who are willing to be donors can go to that site and effectively shop for somebody that they want to give their kidney to. What's a concern about that is there's nothing that stops people from meeting this way to make agreements about what they will receive in return for being a donor. So that's one option. There are two other ways that people can also access kidneys through living donation that also start to feel like something being exchanged that's valuable that isn't so far at least been deemed compensation. One is something called daisy chain donations, where if you're willing to be a donor to your loved one or your friend, but you're the wrong blood type, you can give to somebody else who is the right blood type, and then another donor can give to someone who, again they're not the right blood type for their loved one, but they give to somebody else, and so on and so on until somebody gives to your loved one in a kind of circle. So you're not getting money as a donor, but what you're getting is a kidney that goes to the person you care about, even if you can't be the person who's donating directly. So that isn't called compensation, but it certainly feels like something of value going to someone you care about in return for something that you're giving. And then the third way is through a voucher program. So if you're willing to be a living donor, you get a voucher that you are allowed to give to somebody else who will then go to the top of the line for a kidney donation should they ever need it. It's an opportunity to identify somebody who you think, at some point in their life may need a kidney transplant, but of course maybe never will, so it's a voucher that may never get redeemed, but if if it's needed, it allows the person who holds it to go to the front of the line. So you're being given something a voucher for a kidney transplant, effectively in return for your being a donor. A voucher for a kidney transplant certainly feels like something of value, even though it isn't money into your bank account. So there's all these innovations that people are undertaking out of frankly strong need, almost desperation to find enough kidneys to transplant all these people who are waiting.
00:12:31
Speaker 2: So Sally, who we heard from earlier in this episode, has seen firsthand what donors go through in order to donate their kidneys, and she believes strongly that they should be financially compensated. So could you talk a bit more about the main reasons why some ethicists think that any kind of compensation for organs is a concern, and what bad situations they're worried about happening.
00:12:54
Speaker 4: Sure, and I would put myself into the category of emphicists who are concerned about this. And the issues really fall into th remain categories. One is exploitation, the second is commodification, so turning human body parts into a commodity, and the third is the impact on altruistic donation. So taking exploitation first, there is a real concern and I think everybody recognizes this that when people are desperate and need money, they will do things that maybe are against their better judgment. So that's the worry, and that helps us bridge to the second point, which is about commodification. We're buying and selling parts of human bodies and that feels wrong. It just doesn't seem like it's an appropriate thing to take a piece of a person's body and sell it. So that's problem or concern number two, and then concern number three is are sort of a hard one to assess, but that is a concern that if we pay people to be living donors, that there'll be a negative impact on the deceased donor population, that people just be less willing to be altruistic donors after they've died, or even when they are alive, if there's a market, they'll be turned off.
00:14:09
Speaker 2: Thanks so much, Jeff, great to talk with you today.
00:14:12
Speaker 4: Thank you, Lauren. Great to talk to you as well.
00:14:15
Speaker 2: We're going to take a short break. When we return, we'll hear from Dr Mario Matchis, a behavioral economist at Johns Hopkins University, about why we should allow financial compensation for kidney donation, and to walk us through his proposal for what a system of reimbursement and incentives could actually look like. Playing God will be right back in this episode, So far, we've seen how common chronic kidney diseases and that so many Americans are on dialysis, and there's an interesting economic perspective on whether we should allow financial incentives for living kidney don't.
00:15:00
Speaker 3: So the debate about compensating kidney donors is often polarized, with two sides arguing for extreme solutions or policies.
00:15:13
Speaker 2: Doctor Maria Matches is a behavioral economist at Johns Hopkins University and often works on what people call repugnant transactions.
00:15:22
Speaker 3: A repugnant transaction is a transaction where you have people who would like to engage in an exchange, like a buyer and a seller, but where third parties object to the transaction, usually for ethical moral reasons, and they wish to prohibit that transaction from taking place.
00:15:44
Speaker 2: Mario says he has seen two sides of the debate about paying kidney donors.
00:15:50
Speaker 3: On the one hand, a total prohibitions of money exchanges, and on the other hand, like a free market where individuals can buy and sell organs. Now between these two and this is not, in my view, a very productive way to have the conversation. There are many intermediate solutions between these two extremes. One solution is to compensate donors, reinbursing them for the costs that they incur. Another type of cost is the cost of undergoing the surgery, the risk implied in you know, undergoing a major surgery. There are also sort of, you know, the psychic costs of the anxiety implied in undergoing a surgery that should be taken into account when computing the total costs for a living person to donate a kidney. And this policy proposal is that removing these incentives to kidney donors might lead to an increase in kidney donations. Now, the idea that the act of donating a kidney should be financially neutral for the don or, that it should not result in net costs for the don or, that idea is not controversial. Like ethically, ethically, there's broad support for compensating donors for costs. Where there is less agreement is exactly in what types of costs should be reinborseed and what types of costs should not be reinborsed. For example, the idea of reinborsing the cost associated with risk and anxiety. There is much less agreement on that because that is more difficult to quantify it doesn't really correspond to an out of pocket expenditure, so there is a little less agreement on that. But my sense is that a policy that would reinborse as many costs as possible would be worthwid while policy to pursue.
00:18:02
Speaker 2: In your policy proposal, you talk about eliminating all financial disincentives for kidney donation, but do you think it would ever be appropriate to go a step further and create financial incentives?
00:18:15
Speaker 3: So I personally am in favor of introducing financial incentives that go beyond purely reinforcing donors for their expensive but you know, different people have different views about that based on their own, you know, personal or ethical values. I think there's value in having a discussion and looking at the evidence and understanding, you know, people's preferences, people's attitudes about these issues. And I think that the conversation that we should have is how do we create a system with incentives that can lead to additional donations while mitigating or possibly eliminating most of the of the ethical concerns that people have. I think that such a system can be designed, and that should be the goal.
00:19:06
Speaker 2: So we know that you've done public opinion research to figure out what people think about compensation. And from that research, would you say that Americans are okay with compensation for organ donation.
00:19:17
Speaker 3: From my research, it would appear that a sufficient majority of Americans, in sixty seventy percent, would be in favor of a system that compensates donors. They would not be in favors of a free market. They would not be in favor of a system in which reach individuals would be able to obtain a life saving kidney whereas four individuals will not. But they would be in favor of a system in which organ donors get compensated and an intermediary, ideally a government agency would allocate the result in organs in a fair way among patients in need according to the waiting least according to medical criteria. Cash compensation would be preferred things like, you know, refundable tax credits, or contributions to a retirement account, or contributions to a college fund.
00:20:12
Speaker 2: And what do you think about dialysis? How does the cost of dialysis play a role in how we should think about whether we should pay a living kidney donuts.
00:20:20
Speaker 3: Dialysis is very expensive. It's covered by Medicare, but it's a very, very expensive procedure, and it also leads to lower quality of life because it's cumbersome on patients, and so it's not ideal from both an economic point of view because it's much more expensive than a transplant. All things considered, financially, a kidney transplant saves money to the health system, to Medicare. In particular, there are estimates that indicate that every kidney transplant saves US tax payers about one hundred and fifty thousand dollars over all. So not only kidney transplants are better medically for patients, but they are also economically better for for Medicare and for and for tax payers. So we society should do everything we can to increase the number of kidney transplants that can take place. With society, we should sit down and think about how to design a system that exploits the power of incentives to obtain more donations and to perform more transplants and save more lives by designing the system in a way that is ethically acceptable. That debate has started to happen, but more needs to be done.
00:21:52
Speaker 2: Okay, well, thank you so much for joining us today. I really enjoyed this conversation and I really appreciate your time.
00:21:59
Speaker 3: Thank you, it was a great talking with you.
00:22:03
Speaker 2: As for Sally, she's doing well. She knows she will likely need another kidney at some point, but for now she's advocating for a system of donation incentives, a system that she thinks will not only help her, but thousands of others in need of an organ.
00:22:19
Speaker 1: The one person who takes the risk, meaning an operation, who gives a thing of value, the kidney, they're the one person who doesn't get paid. And the entire edifice of organ transplantation. You know, the hospital gets paid as it should, the surgeons get paid, the nurses, the O R rental, it's all paid. Money makes this happen. But the only person who gets nothing is the person who takes the risk and provides the organ. And you know, why shouldn't they, especially if this will save could save thousands of lives.
00:22:57
Speaker 2: Next time on playing God And.
00:23:00
Speaker 1: I just remember laying there and watching the lights above me as we're walking down the hallway, and the first thing I said.
00:23:07
Speaker 2: Was do I have a uterus?
00:23:09
Speaker 1: And the nurse who was pushing me look down and they smiled and they're like, you have a uterus?
00:23:15
Speaker 2: In twenty thirteen, the first uterus transplant to result in a live baby being born took place in Sweden. Uterus transplants can offer a life changing opportunity to individuals with certain types of infertility, but when is it ethical to transplant non life saving organs and what are the additional ethical issues when a transplant becomes a reproductive technology. Many thanks to our guests in this episode, Sally Settel and Mario Mutchus. Playing God is a co production of Pushkin Industries and the Johns Hopkins Berman Institute of Bioethics. Emily Vaughan is our lead producer. This episode was also produced by Sophie Crane and Lucy Sullivan. Our editors are Karen Chakerjee and Kate Parkinson Morgan. Theme music and mixing by Echo Mountain Engineering support from Sarah Bruguerre and Amanda Kaiwang. Show art by Sean Krney, fact checking by David jar and Arthur Gompertz. Our executive producer is Justine Lang at the Johns Hopkins Berman Institute of Bioethics. Our executive producers are Jeffrey Kahan and Anna Mastriani. Working with a Melia Hood. Funding provided by the Greenwall Foundation. I'm Laurena Rura Hutchinson. Come back next week for more Playing God. Generous support for Playing God is provided by the Greenwall Foundation, making bioethics integral to healthcare policy and research. Learn Moore at Greenwall dot org