One is Enough
Welcome to "One Is Enough," a podcast brought to you by the National Kidney Registry. Hosted by two individuals closely tied to the world of kidney donation— one a living donor and the other a grateful recipient— this podcast serves as your ultimate guide to the complex landscape of living kidney donation in the U.S.
One is Enough
Ep.7 - A Crash Course in Altruism with Neuroscientist Abigail Marsh-Part 2
As a young adult early in her collegiate career, Abigail Marsh experienced life-altering altruism first-hand. That interaction sparked the question that has fueled much of her research ever since , “why would a stranger risk their life for me like that?” In this episode, host and kidney donor Michael Lollo speaks with world-renowned neuroscientist, psychologist and professor Abigail Marsh to discuss different types of altruism and dive into the connection between altruism and living kidney donation.
Welcome everyone to One is Enough the official podcast of the National Kidney Registry. As promised, I will continue my interview with neuroscientist, psychologist and professor Abigail Marsh in part two of our first episode of the new year. Thank you for listening in as we resume our conversation about altruism and how it influences living kidney donation. This is still to this day, even if it ties into the question, because we did this thing, okay, great, and then we feel like it was, dare I say, so easy. I understand there's a whole process behind it, but it was fairly an easy process. I want to share that story so I can help educate other people and maybe motivate other people. There are kidney donors that don't want to share the story because they don't want to be seen as glorifying what they did. You're almost meant to feel ashamed that if I say I'm a kidney donor, you don't want to say it.
Speaker 2:You'll be a turned into the bad art friend story.
Speaker 1:Yeah, I don't mind talking about it. But someone will say, oh dude, if you met Michael, he donated his kidney and I'm like, yeah, it was no big deal. So I want to pick your brain on how it makes other people feel. So, from a personal standpoint, I don't know if I've told this part before, but my family was not. I did not receive a positive response from anybody. My sister's a nurse, my antipasitions assistant. My mother was not pleased whatsoever. I remember I called my grandmother to tell her. My mother was like you got to tell your grandmother. I said okay. So I called her up and I said hey, graham. I said I just want to let you know that I'm going to be donating my kidney to a stranger in December. Her immediate response was and I don't even think I've even heard the term altruistic, to be quite honest. Her immediate response was she said you are trying to feed something in your head. She goes you are not altruistic and I said okay. I said all right, well, listen. I said well, we're going to agree to disagree. I said I just wanted you to hear from me that I was going to be going through this and I hope you have a great day.
Speaker 1:My mother was very against it and I sent her Ned Brooks' video. And now, mind you, I was 46 at the time. So it's not like I'm a 17, 18 year old kid who comes home and says I want to get a kidney taken out of my body so I can give it to a stranger. But I would have thought that they would have thought more of me for doing the research. Now my aunt and my sister they work in the medical profession and I think they have some other insight about, maybe, things that go on in the medical profession. So I think their fears were related to that. But I did hear one of the things was well, how do you know who's going to get your kidney? What if you're a cop? At the time I was a detective with the NYPD what if it goes to a criminal? And I said well, if they're on the list, then that means they need the kidney.
Speaker 1:And at the time I was helping out on the detail with Cardinal Dolan, the Archbishop of New York Wow, wow. I told him about this we were having it was like in his private residence. I said, oh, I'm going to be donating my kidney. And I told him about what the reaction was that I was getting from people that maybe the person who receives it doesn't deserve it, and I remember Cardinal Dolan, of course. I mean, what else would Cardinal Dolan say? He said that's for God to decide, right, who deserves to get your kidney or this gift. That's not for us to decide. I had no, but anyway. So it's a long, long-winded question. But why do these people who react this way have small amygdalas? Why do us kidney donors get this reaction from family and friends like you're nuts? This is a terrible idea. Have you had experience with that or any ideas?
Speaker 2:Yeah, I mean I think it relates to something called egocentric bias or consensus bias, which is that we just tend to assume that other people's internal experiences are like our own, which is usually true because of the nature of standard distributions. Most people tend to cluster toward the middle of most traits and tail off toward the ends. But that means that if you are somebody who is a little bit unusual for example having a strong desire to donate a kidney to a stranger, it's just statistically unusual it's going to be hard for other people who are in other places on that continuum to understand the motivation, because they don't have it, they can't imagine having that desire, and so it's a pretty common thing, I think, for people who cannot imagine having that same desire themselves, to label anybody with that desire crazy or to assume it's something else that they can imagine. They're like well, I cannot fathom having the desire to do that, to give up my own kidney for a stranger, but I can imagine wanting other people to praise me and fawn over me, and so I'm going to assume it's something that it's easier for me to imagine than for something I can't.
Speaker 2:I really think that that's a big part of it, and so I do. I mean especially people who, when they hear about my research, they're like you know, I just believe it's got to be some self-serving motive at the root. I'm like, well, you just told me a lot about yourself. More than anything, I now know that you are not the sort of person who can imagine having a strong and a f-alteristic motivation. So thanks.
Speaker 1:So Ned Brooks was my mentor. Although we didn't have a mentor program, we didn't call the mentors at the time I simply called him my kidney guy. And when I got this response from numerous people, I went back to Ned and I said, ned, like this is the response I'm getting, and he said something very, very similar to you. His take on it was, you know, by you telling them this and you doing this, whether it's consciously or subconsciously, you make them feel bad, if you will, that they can't even think of doing something like that, like that would like it wouldn't. Not that they're bad people, it just that's not something that would cross their mind.
Speaker 2:So it's almost like a it's called do-gooder-derogation, it's got a name and everything.
Speaker 1:Oh, my look, you got a name for everything. You psychologist Do-gooder-what. What is?
Speaker 2:that.
Speaker 1:Do-gooder-what. What is?
Speaker 2:that it's called do-gooder-derogation.
Speaker 1:I'm going to write that down and look that up. Do-gooder-derogation Okay.
Speaker 2:Yep, and it's pretty common. Anytime, you know, people are breaking the norms of pro-social behavior, especially for people who were sort of at the lower end. They don't like the norms being shifted and it's like, well, now I'm going to be expected to do more to be able to, because people do understand that like there is a little bit of moral status that's acquired by being a good person and you know they don't want to fall to the bottom of that hierarchy by other people pushing the curve up.
Speaker 2:And I find it a very interesting individual difference that some people hear about altruistic kidney donation and feel a sense of how beautiful it is and inspired by it. And you know, like that's how I feel. And other people. It makes them feel bad about themselves. And not everybody has that feeling bad about themselves, but I've definitely met other people who were like I don't want to think about this. It makes me feel really bad about myself. I'm like why you know? But you know, as we've talked about, we know some of the reasons why.
Speaker 1:Probably yeah, I've been asked, you know, by several donors that I've mentored and you know what?
Speaker 1:Should I tell my story?
Speaker 1:And what I say is you know, listen, there are going to be people who are, you know, going to, you know, maybe put you down about it or tell you that you're crazy, and some of these donors just didn't want to put themselves out there. But I say obviously, because I've been talking about it since December of 2018, you just keep telling that story because you know you're only able to donate that one kidney, because one is enough. But the story that you tell will go on and on and I personally have had validation where people have read or seen or heard my story and, ultimately, have donated. So, you know, that is an amazing feeling when someone says, oh, you know, I heard your story and it inspired me and I, you know, started looking into it and next thing, you know that they actually donated. I'm like I'm never shutting up. You know it's hard to get me to be quiet anyway, but as far as you know, kidney donation, forget about it. Like I'm never, you know, until I can't talk anymore, I'm not going to stop telling the story.
Speaker 2:Yeah, and that is truly an altruistic thing to do as well. Because I mean, as you've talked about, you know, people sometimes are suspicious that people talk about their kidney donation to try to get a claim or praise. And there was that horrible bad art friend story in the New York Times. I mean, the article itself was good and did you read this article about you know? I'm not going to go into the details, but I heard a lot about it from many altruistic kidney donors after it came out. It was about two friends in the publishing world. Well, friend, of yours.
Speaker 1:Yes, yes, right, oh yeah.
Speaker 2:And one of the things that was that the woman who had been an altruistic kidney donor was being a narcissistic, attention seeking crazy person. By talking about it broadly, I know.
Speaker 2:And so and I really felt you know I try not to weigh in on political stuff at all when it comes to social media, but I, or anything that could just be construed, as you know, putting down some people or so I just I really try to avoid that.
Speaker 2:But I really felt compelled to weigh in on this particular story because I felt like so many donors have contacted me. Saying this makes me feel like everybody assumes I'm a horrible narcissist when I talk about my donation, and so I, you know I wanted to come out there and say, like everything in my data shows me that the opposite tends to be true, that altruists are unusually humble. They only talk about their donation to try to help other people, you know, think about it as a possibility and to normalize it. Because that's the difference between thinking a particular behavior is crazy versus like a perfectly understandable response is how common it is. The more people that we encounter who we know have donated a kidney, the more people like well, that seems like something a person might do. I mean, there are places in the world where donating blood is considered crazy just because not enough people do it.
Speaker 1:I can't actually I can't donate blood. I donate a blood once in my entire life. I had a terrible experience. Unfortunately it's a story for another day, but I and ever since that time I didn't. I passed out when I had blood taken. I passed out no-transcript Told the story before. I passed out when I got my blood taken for the kidney donation. But the only surgery I ever had was the kidney donation that I had surgery before. So yeah, a lot of fainting stories.
Speaker 2:Yeah, you clearly cannot donate blood, so right. But I mean, there are places in the world where people think it's crazy to donate blood to strangers, right, why would you ever open up your veins to?
Speaker 2:say blood can go to strangers. That's wild, right, and it used to be considered crazy here. And then, once it hits a certain threshold of you know people thinking, well, this is the thing people do, then suddenly what seemed crazy seems like a totally normal thing, and then it becomes a self, like a virtuous cycle. Then more and more people are willing to do it. So keep talking.
Speaker 1:We need kidney donation to be mainstream, like you said, like blood donation is. But part of the problem is the transplant centers themselves still view Good Samaritan donors as, dare I say, a little bit crazy, right? So if you're donating to someone that you know are relative, you have one stop at a social worker, right, and you have the conversation to make sure you're not being coerced and or paid and you're doing it for the right reasons. But if you're a Good Samaritan donor, you got to stop and see the psychologist too, right? So even within the industry there's, we got to really make sure that this person is not nuts, right? Because why would they want to go through this procedure? That they don't need to have an organ removed from their body to give it to someone that they don't know. So we have a lot of work to do, I think, to change the thought process even within the transplant industry.
Speaker 2:Absolutely, and I know there are transplant centers where the medical criteria for donating to a stranger or stricter, like your blood pressure has to be even lower and other numbers have to be even better, if you want to donate to a stranger than if you donate to a relative. That to me seems silly. It just feels like you should have one criterion If you're healthy enough, you're healthy enough to donate, no matter who the recipient is.
Speaker 1:I completely agree. I completely agree. In one of your books you wrote about how unusually easy it was to get non-directed donors to participate in the research, which I am not surprised, because donors love to be involved and things like that. So what other surprising traits do altruistic donors tend to display? And was it easy to peg, or is it easy to peg an altruistic donor? So if you had a room full of people, can you go? Number two, you're altruistic. Number 20, you're altruistic. Are you that good, abby, that you can walk down the street and go outtristic, outtristic.
Speaker 2:Not at all.
Speaker 1:I wish.
Speaker 2:That would be an amazing recruitment tool. No, I'm not good at it, and I'm thinking of people who I've known over the years, who I later went on to discover that they either were in the process of becoming a donor or had donated. And it almost always takes me by surprise Because, again, there's no real stereotype that donors fit on almost any access, except they actually care more about other people, and that is not a trait that announces itself. There are some donors who are kind of taciton and grumpy. There are some who might be in the autism spectrum and might seem socially different in those ways.
Speaker 2:There are people who have jobs that are associated with altruism, like they take care of homeless animals, and other people who have jobs that don't seem at all altruistic there, really is no, there's no template that I would say altruistic donors fit at all other people than having this strong sort of intuitive belief in the value of other people and not believing that there are some people who are just fun so bad that they don't deserve to live, kind of like the conversation you had with the Cardinal and that's it. But that is not a trait that announces itself. You just never know who out there could be an extraordinary altruist that you don't peg Me too.
Speaker 1:So that is. That's exactly what I've been saying, but no one's listening to me. So if you go to OPTN, it's like a government website. I don't even know the legislative organ OPTN. I don't know what it stands for. Just go to OPTN.
Speaker 2:For term and transportation or something.
Speaker 1:Yeah, something like that, but they're the ones that have all the data for the people in the United States who donate in various ways, and there are only 300. Today, about 350 to 400 people donate truly as a Good Samaritan donor. Out of the 6,000 or so that donate approximately 6,000 to donate each year. That's a super small number. So it seems very logical that if we want to increase living kidney donation, if we took that 400 and we could turn it into 800 or 1,400, that's the key, right? But the problem is it's going to take money, like a lot of money.
Speaker 1:So I feel that there are donors all over the United States of America. Right, because I think it's like 200 million people over the age of 21 in the United States. They just don't know they need to be awoken. Right, because that's the hardest question for a Good Samaritan donor to answer as well why did you donate to a stranger? And it's very difficult to put into words, but it's usually like a moment, right? You didn't know anything about it and then you saw the news story, you saw the flyer in the deli, you saw a Facebook post and it triggered something.
Speaker 1:You heard Ted talk.
Speaker 2:That's right, yeah, or Ned's interview oh my gosh, I love that.
Speaker 1:We send that to everybody who is looking to be a kidney donor, because it's awesome.
Speaker 2:He's really good. I feel like he's a good guy. Why would you donate a kidney to a?
Speaker 1:person. Why would you donate a kidney? Why would you donate a perfectly good kidney to a stranger? I think is the name of the Ted talk. So how do we wake up all these people? I really think the government should be doing PSAs, not saying, hey, you give me your organ, but more of like. This is like you could do this right.
Speaker 1:You could help, because how many health problems are there in the United States that we have a cure? So there's about 100,000 people on the wait list. There are 400,000, 500,000 people on dialysis who definitely, I'm sure, would love to get a kidney and be off dialysis. But if you focus on the wait list, we have the answer. It's living kidney donation and we have the numbers. There's 200 million people. So if less than half of 1% of the population gets tested, we could probably eradicate the list. So what's the advice that you have on waking up all these sleeping donors, as I like to call them?
Speaker 2:Well, I think I mean from the evidence I've seen the number of people who will actually be convinced to donate, who are eligible. You know, mentally eligible is not everybody, obviously. So the best way to do it would be to be targeted in our get out the word campaigns and what I've suggested in the past and I was involved with a project that NKDO did that basically verified what I had suspected, which felt really good because it felt like, oh, I've learned something valuable over the last 10 years of doing this work is that the people who are most likely to donate kidneys have some features that, if you know about their history, are predictive being a frequent blood donor is definitely up there, signing up for the Marrow Registry or having donated Marrow is up there, and being a vegan or vegetarian also seems to be up there.
Speaker 1:Oh no, abby, really Gosh. Elaine Perlman is my biggest vegan friend and if she hears this podcast she should be very happy, like you said, and again, lots of donors are none of those things, but definitely those, yeah, you need. Just for the record. I need to be no vegan.
Speaker 2:Like I said, we all have our ways of contributing.
Speaker 1:They try to convert me though Elaine's. Like you got to go vegan. I'm like uh-huh.
Speaker 2:I'm not vegan. I actually think the veganism is a little too far from the way we evolved. However, I don't eat meat. I don't eat meals.
Speaker 1:So this is what I told you, lane. I went to a function you know we were at a like a retreat, if you will, and there was a bunch of vegans there and they, you know, they prepared all the food and and I tried everything that they prepared and it was delicious.
Speaker 2:It's I'm lazy.
Speaker 1:It's just I'm lazy and I don't want to do all this prep work. I just want to like take a steak, throw it on the grill with a little salt and pepper and then and then cut it up, but the food, as far as taste goes, it's delicious.
Speaker 2:I don't like meat either, so that it really wasn't hard to give it up. I know it doesn't bother me at all, but, you know, partly it's also. There's a whole huge literature on this, but it's really hard for people to override taste preferences that developed early in childhood. So, for, if people ate a lot of meat in childhood, it's just really really hard to get them to switch to a diet with no meat. It's not no people, but like it's. It's hard and and to get people to switch to any diet that's very different than the diet they grew up on.
Speaker 2:You know, I mean, I think there's really something deep in our brains that we're. You know, we get our food patterns set pretty early in life and you can change people, but we also shouldn't expect miracles. And I think the same is true for, for you know, people who are likely to be kidney donors, people who are highly psychopathic, are just unlikely to ever want to bother. Um, but you know there are lots of people who I think are in that bubble who like, could you know? Like, donating kidney is within the window of possibility for them, sure, and the things that seem to make the biggest difference are Having had enough similar prior experiences, that it starts seeming attainable. So if you do a lot of blood or marrow or plasma donation or not a lot of marrow, but you know what I mean Um, that it's starting, you know like it's like, well, this is the thing you do, like you go to the hospital.
Speaker 2:You get a bunch of tests, they take something out of your body, somebody else gets to live who wouldn't have lived otherwise, and that's awesome and I'm so glad I did. At looking back and then the next time and something like that crops up, it feels that much more attainable. Um, I also think that social norms are huge, and especially hearing the message from people who are like yourself seems to matter a lot, and so this is why it's important for lots of different donors to get the message out. But, like I did this, like it was totally, actually totally, totally not that big a deal, because, you know, for people who were like you in some way and like other, you know, former police officers and detectives or something would be, or you know people from your same High school or whatever, have something in common with you, you were particularly effective.
Speaker 2:Right you know, messenger for them. I was just reading something the other day about somebody who, um, you know it was trying to convince a friend to get the covid vaccine booster and the friend didn't really didn't want the booster but he really liked the band, the offspring, and it turns out that the leader of the offspring, the band it was, has a phd and has done like mrna research.
Speaker 2:Wow and then hearing that that guy is like you know, yay mrna and yay covid vaccine, this offspring fan was like oh, all right, you know there's a connection, yeah. Yeah, like. So it often takes Hearing the message from somebody that you connect with and that you feel like well, if they think it's okay, then I can. I think maybe I could change my mind.
Speaker 1:In one of your recent publications, you found correlations between altruism and well-being, things like High life satisfaction and having more positive and negative thoughts throughout the day. Can anyone take up altruistic behaviors in order to get the benefits of a higher well-being?
Speaker 2:Well, it does seem that there's a nice bi-directional relationship between altruism and well-being. So when people are experiencing higher levels of well-being they seem to be more altruistic on average, and also people pretty reliably report the helping other people increases their well-being. So, yes, if you are looking for a way to feel a higher sense of life satisfaction, happier with your life, I highly highly recommend helping other people as a route to get there. It does have to be intrinsically motivated. It turns out that if you're forced to help somebody else you know, or you're helping them for some motive that isn't about really helping. It doesn't seem to have the same effect. So it does have to come, you know, from an intrinsic motivation to help.
Speaker 1:But if you're like shamed into doing it.
Speaker 2:Uh yeah, that doesn't work.
Speaker 1:That doesn't work. Shamed altruism.
Speaker 2:Yeah, don't shame your grandma into donating a kidney. That's not the way to do it. Um, but uh, if it it comes from a place of truly wanting to help, it really definitely helps. Improve your own well-being like so much more than doing something to benefit yourself.
Speaker 1:Well, so you know we talk about shaming, shaming people, um, you know, I I speak to to patients quite often as well and it's, you know, very troubling Um that they have their family around them, you know their close friends around them and they almost expect that these people around them should be going to get tested, right, because you love me and wouldn't you want to help me, and so why are you not going to get tested? I even had experiences where people told their family members they were going to get tested and then they're calling me and saying John says he hasn't heard from the transplant center. And I call the transplant center and, without violating any HIPAA or anything like that, they go there isn't anyone being tested for this particular person at this time. So, yeah, so it's an interesting dynamic, because you would think that these family members would want to.
Speaker 1:So when I'm counseling them or coaching them, I tell them it is a major decision, although and I'm very careful now when I tell my journey or my story, because I had such a great experience and for the most part, it was fairly easy and a few of us good Serena, donors get very high energy and I walk around the streets of New York or city or Long Island going. Why do these people have two kidneys? What are they doing walking around? Because I have X-ray vision so I could tell that they have two kidneys and I'm like what is going on? These people should be donating that organ. But anyway, I tell them that it's obviously a very personal decision. You can't force someone to donate or shame them into donating. But do you have any experience with that where family members almost feel bad and they start doing the evaluation process? I'm just hoping during the social evaluation, a psych evaluation, that that would come out, and I'm assuming the transplant center would not want them to go forward.
Speaker 2:Yeah, I would say I've only heard a couple of these stories anecdotally through the years, because so often the altruistic kidney donors that I work with don't know much about the backstory of the recipient and often I do think there are some biowethers that aren't comfortable with a person getting a kidney from an altruistic donor if they do have family members who won't even get tested. You really should have.
Speaker 2:No, you should tap out your social circle before you are able to go to an altruist and I'm not a bioweathess, so I think that's a hard call to make, but I know it does happen and it's got to be a terrible situation to be in as a patient.
Speaker 1:So, Abby, before we close out the podcast, is there anything that we didn't discuss or anything that you want to say before I give my closing remarks?
Speaker 2:No, I think we really covered a huge amount of ground, and I think this got to everything that I wanted to talk about.
Speaker 1:Awesome. Thank you so much. I want to thank Abigail, or Abby, for joining me today, and I encourage anyone who is interested to visit Abigail's website, abigailmarsh a-b-i-g-a-i-l-m-a-r-s-h dot com to learn more about her research and even participate in her lab's research studies. Your amygdala can be sized up and I'm going to come I think I'm going to hit you up. I want to see what my amygdala is big or small, or what the kidney transplant community is truly indebted to her for her study of altruist behavior. I also want to thank all of our listeners the millions that we have out there for joining us today.
Speaker 1:We really hope that today's episode was thought-provoking, informative and inspiring and, of course, I always like to add a bit of humor, so hopefully you left once or twice. If you're looking for more information on living kidney donation or you'd like to start the process of being screened as a potential donor, please visit kidneyregistryorg. You can learn more about the podcast by visiting kidneyregistryorg Slash one. When you're there, you can sign up to be on our email list so that you'll be the first to know when we drop a new episode and, trust me, you want to be the first to know.