Kidney to Share A Donor and an Ethicist Discuss Living Organ Donation

Joel Roselin

I'd like to welcome all of you. Good afternoon, everyone, or good morning, depending on where you are in the Zoom universe. Thank you for coming to what is sure to be a fascinating program, Kidney to Share, a Donor and an Ethicist Discuss Living Organ Donation. Today's event is a program of the newly created Hofstra Bioethics Master's Program, which is a joint project of the Gittenstein Institute for Health Law and Policy and the Hofstra Bioethics Center. under the auspices of the Maurice A. Dean School of Law. I'm Joel Roslin. I'm the assistant director of the Gittinstein Institute and co-director of the Bioethics Master's degree program, which just launched this fall. This new MA program provides in-depth study in bioethics for working professionals in law, healthcare, and related fields, as well as to recent professional school graduates. The MA is an extension of the Hofstra Certificate in Clinical Bioethics that has trained over 100 students and professionals over the past six years. Information about both of these programs can be found on our website, which is gittensteininstitute.hofstra.edu.

Joel Roselin

As the program goes on, if you have a question, please put it in the chat and I will read them when we get to that part of the program. I'd now like to hand it over to my colleague, Professor Janet Dolgen. Professor Dolgen is the director of the Gittenstein Institute, co-director of the Bioethics Center, distinguished professor of health law at the Dean's School of Law, and professor of science education at the Zucker School of Medicine. Janet.

Janet Dolgin

Thanks so much, Joel. It's really a pleasure to help open today's event. We have two really exciting speakers, Martha Gershon and John Lantos, who have co-authored a book called Kidney to Share. The book offers descriptions and commentaries by both Martha, who is herself an organ donor, and John, a physician and bioethicist. Their work on organ donation speaks to a myriad of issues that we consider in our clinical bioethics program here at Hofstra. And generally, and for that reason, the book really spoke to me. I thought as I read it, my goodness, this is a book our students must read. Not only do we generally consider organ donation, as I would think any program in bioethics has to, but more particularly, we consider in some detail responses to the limited supply of organs for transplantation in this country and around the world, as well as challenges inherent in the nation's system for regulating organ donation. And John and Martha both speak about that. The book also reflects the clinical part of our clinical bioethics program um and about that i am very excited um

Janet Dolgin

it it offers many perspectives from two people each of whom has an awful lot to um offer It also, I guess almost inevitably, given who the authors are, reflects an interdisciplinary perspective, one of the central aims of our clinical bioethics program. You get from kidney to share a medical perspective and historic perspective, a legal perspective, and perhaps unusually, a very personal perspective about organ donation. We see Martha's description and actually her thoughtful analysis of what it means and meant to her and means to her to be to have been an organ donor and John's trenchant analysis from the perspective of a physician and a bioethicist. Until recently, Martha Gershon was executive director. of the Jackson County CASA in Missouri. CASA stands for Court Appointed Special Advocate. The Jackson County CASA is one of the largest in the nation. The organization responds to the needs of neglected and abused children. In 2018, Martha donated one of her kidneys to someone who, when Martha agreed to donate, was a stranger to her. John Lantos is a professor of pediatrics at the University of Missouri's Kansas City School of Medicine.

Janet Dolgin

He also directs the bioethics program at the Bioethics Center at Children's Mercy Hospital in Kansas City, Missouri. Their book Kidney to Share was published in 2021. We are absolutely delighted to welcome both Martha and John to our law school.

Dr. John Lantos

Thank you, Janet and Joel. And we're thrilled to be here. It's great to see so many people coming out for lunch. We're going to try to talk for about half an hour and really look forward to people's questions, comments, and discussion, which For us, it's been the most exciting part of this whole project. The project started with discussions that the two of us had. We were old friends, and when Martha told me she was thinking about or had decided to see if she could donate a kidney, we had many discussions. Those discussions eventually are what led to this book. We're both writers and wanted

Joel Roselin

to do

Dr. John Lantos

it. I'm going to give a little bit of background about some of the history and bioethics debates. Historically, Martha is going to talk a little about her own experience. We'll both talk a little bit about some of the policy implications of the book, and then we'll get your questions. I think everybody knows we need more kidney donors. There's probably about 100,000 people now on the waiting list. These numbers are a year old, and COVID has been bad for transplants. About a dozen in the United States die every day waiting for a kidney, and there clearly aren't enough donors. uh for those hundred thousand people on the waiting list in 2020 there were 17 000 donors most of those were deceased donors cadaveric donors about a third of them were living donors and you can see from the breakdown here about two-thirds of those went to a biologic relative spouse or life partner or through paired donation which we'll talk about a little bit also went to somebody close most likely closely related to the To the donor about a third were either anonymous or directed unrelated that is given to a specific recipient, although someone who wasn't one of these close relatives on the waiting list or desperate, this is something a billboard that was painted over in Kansas somebody.

Dr. John Lantos

Trying to find desperately trying to find a donor, a lot of these. efforts to find donors have now moved to social media. The American Transplant Foundation helps people figure out how to do crowdsourcing campaigns to try to find a kidney for donation. Magazines like Good Housekeeping tell heartwarming stories about this, but the heartwarming stories sort of cover up the tragedy of people who die because there aren't enough kidneys to go around. raises the question of whether we can increase the supply of organs. And broadly speaking, people have talked about different ways of doing that. One is to try to increase the number of cadaveric donors. And the most talked about proposal to do that, that some countries have implemented, is to take an approach different from what we do in the United States. That is, in the United States, if you want to be a donor, you have to opt in. You have to check the box on your driver's license or otherwise

Dr. John Lantos

communicate your wishes that you'd like to be a cadaveric donor after your death. In some countries, they have an opt-out approach where you're also called presumed consent, where you're presumed to want to donate unless you say you don't. And we'll give some data on that. People have talked about markets paying people for kidneys or... John Kane- variations on markets and we'll talk a little bit about some of those like parent donations chain donations, maybe even vouchers for people who donate and the implications of those. John Kane- Both in bioethics and law and also in medicine for whether they will both increase the supply. John Kane- and not lead to. John Kane- unintended consequences like lower quality of kidneys or exploitation. Finally, the one we talk about most in the book, encouraging more living donors. And the story we tell is about some of the ways that programs discourage kidney donors.

Dr. John Lantos

Many of those discouragements grow out of the history of transplant, particularly discouraging people who want to donate to someone who's not a close relative, people who want to donate to a stranger like Martha did. If you look at the history of transplantation, there was a lot of skepticism about people who came forward and said, hey, take my kidney, give it to someone who needs it. I don't need to know them. I don't need to like them. They don't need to be a relative. I just want to help suffering humanity. I'm a good person. I'm an altruist. And the usual response to this was to send these people to see a psychiatrist, assuming that anybody who would undergo such a procedure must need help badly.

Dr. John Lantos

Transplant surgeons have always been skeptical, not just about stranger donors, but about any living donors. In the early days of transplantation, donations from living donors were the most successful. In fact, in the earliest days, the only successful ones because people needed to be biologically related to overcome problems of rejection and histo-incompatibility. which were not well understood in the early days. So the successful transplants were mostly those from siblings or the best were identical twins who wouldn't reject an organ. And even for those in the early days, surgeons were reticent to do these operations because after all, they involve causing harm to a perfectly healthy person who's not a patient for the benefit of another person. And surgeons said, we're just not going to do that. That violates the primary ethical obligation to do no harm, except where it's a close family member. And their surgeons were a little more generous about that.

Dr. John Lantos

In particular, they allowed family members to donate because they thought the psychological benefits of donating to a loved one outweighed the harms. Reticence was so widespread that in the UK, they even had a law for about 15 years prohibiting donations, except to close family members. It was coupled with a prohibition on markets and commercial dealings in organs. But the idea was that giving to a non-relative seemed to be more morally equivalent to selling an organ than to the sort of healthy altruism that people saw as motivating donors who donated to a family member. So with that in mind, we're going to hear from one such potentially crazy stranger donor, Martha Gershon, who made this decision and faced some of the stigma associated with it.

Martha Gershun

Thanks, John. So I actually do think I'm possibly crazy, but I don't think I'm crazy because of this. The picture you see here is Deb Porter Gill. She's my kidney recipient. I first read about Deb in a story in the Kansas City Jewish Chronicle in December of 2017. And from the very beginning when I read about Deb's story, I had the feeling that I should try to help. And I use the word try intentionally because the odds of any one individual matching with a specific other individual to whom they're not biologically related is about one in a hundred thousand. I did not do that slightly crazier, certainly more altruistic thing, which is offer my kidney up to the pool and say, here's my kidney, find someone it matches. If you do that, they're definitely, they're going to find you a match if you're healthy. But what I did was slightly different. I said, test me and see if I match for Deb.

Martha Gershun

This was something that had been kind of lurking in my life for a long time. I had a very close relative, a cousin in Omaha, whose life was saved from a living kidney donor, a close family friend who was a match. I had at one point in my life had a near miss as a bone marrow transplant donor. I had matched, but then surgery, the procedure had been canceled. I've been a blood donor most of my adult life. So these were ideas that had been swirling around. But by 2017, when I read the story about Deb, I was retired from my full-time job. Our kids had left home. Sadly, our folks had passed away. I didn't have other responsibilities, child care responsibilities, elder care responsibilities, even a job. And I thought, this will be my next project. This is my next volunteer project.

Martha Gershun

It was a miracle I did match with Deb. And I thought from that point on, this was going to be straightforward. I'm very healthy. I assumed that I would pass the medical tests, which I did, as it turned out. But I did not understand the extent of the logistic barriers that are put up, I think in part because of the history John talks about, that we distrusted the motivations of living organ donors, and some of them just because they're very old fashioned. that made it hard to donate not hard medically not hard surgically not hard because of needles in my arms and a possible knife on my belly but hard because they took time and they took energy and they took smarts and i thought that was a bad idea because i do not think that every prospective living kidney donor has the privilege that has come to my life i am upper middle class I am white. I'm highly educated, overeducated. I speak English as a first language. I know how to advocate for myself and have through much of my life. All of those are great things to have in your toolkit as a person, but I don't believe they should be required to be in your toolkit to successfully donate a kidney. And I think that's particularly important because what I did, which is essentially volunteerism, is lovely and nice and meant a great deal to me in my life but is not the same pressing need of a family member trying to save the life of a child of a parent of a sibling of a spouse and to make it harder for someone to save the life of their child or make it harder for them to save the life of their husband i think is a system problem which bears examination and quite likely remedy. Some of the things John and I talked about in the book have to do with those barriers. When I disclosed to the Mayo Clinic that I occasionally smoked recreational marijuana, I answered a survey. I answered the survey correctly.

Martha Gershun

That set up a lot of red flags. And I was blocked from moving forward in the process until I agreed to see a substance abuse counselor. I was willing to do that. I'm not a drug addict. I smoke a little weed now and then. But then they didn't have any substance abuse counselors who were available for two months. And so it was going to postpone the donation. It was going to make it important for me to go up to the clinic, Mayo's about six hours away from my house by car, twice. Things were becoming inconvenient. similarly when i answered accurately on the form that yes in fact i had a mental health counselor a therapist who's been a big help throughout my life that was another red flag they blocked me from going forward in the process until i agreed to have her fax all my mental health records up to the clinic once again we sort of talked our way out of that my my practitioner um said no that she would write a letter saying that donating a kidney would not negatively impact my mental health, that I didn't have a clinical diagnosis, that I wasn't on meds.

Martha Gershun

But again, if I hadn't been someone who knew how to advocate for myself, if I had been to the county mental health clinic once or twice in my life, I think that would have been another barrier. There are huge logistic barriers. You'll see the picture in our PowerPoint of the box. If you donated a clinic that's not near your home, you're often shipping blood up to the clinic for them to test for many things. The most difficult for me was a required test 30 days before transplant for HIV, hepatitis, or AIDS. Makes perfect sense. You would never want to put an infected organ in a recipient who's about to be on immunosuppressant drugs for the rest of their life. you could kill them instead of save them. However, it turns out that the blood for that specific test has to be shipped on dry ice. And in my case, the transplant clinic had no arrangement with any shippers, had no directions about how to do that. They essentially assumed I would become a shipping expert and figure out how to ship my blood drawn a vial on dry ice. Oh, by the way, asterisk, if you ship dry icing correctly, it can blow the airplane up. It's a very powerful substance. And so I felt like that was sort of an inappropriate burden to put on me. I was offering to donate a kidney, not to be a shipping expert. There are also huge financial barriers to donate. Things have gotten better since I donated in 2018, and there are more nonprofits in place literally all the time. to help living kidney donors with some of the expenses, but there are almost no programs that will make someone financially neutral for doing this generous

Joel Roselin

act.

Martha Gershun

And in my case, my husband and I were out over $4,000 out of pocket for the donation. This was travel, this was hotels, this was food. It doesn't even count the 16 days my husband took off work to accompany me. So those are pretty serious barriers. In my case, my kidney recipient, who comes from an affluent, well-resourced family, reimbursed us. She wrote us a check for our expenses. That's legal. However, you can easily imagine someone who is a low-income donor paired with a low-income recipient, unable to access some of the philanthropic programs out there, not being able to save someone's life. because of cost. And you do have to ask yourself the question, which is I think really at the heart of our book, why would we ask the donor, the one person who really has nothing to gain from this process, to be the one to bear the costs and the burdens? John, you wanna tell them a little bit more about that?

Dr. John Lantos

Yeah, I could talk a little bit more about that and some of the, proposals that people have come up with to try to avoid it. One idea that we batted around a little bit as we were thinking about this is that, in some ways, donors are treated sort of like college athletes. That is, everybody else is making money off the work that they're doing, and they are prohibited from compensation. That may change for college athletes. Whether it will change for organ donors, we'll see. As I said, one of the proposals for increasing the supply and maybe eliminating some of these barriers and financial burdens would be to create markets for organs. This has been debated for decades. It's interesting that there are some body parts which it's perfectly legal to sell. Here's a list, a partial list of some of those and

Dr. John Lantos

some estimates of the going rates for eggs, sperm, bone marrow, blood, and plasma. Wombs are not for sale, but they're for rent in surrogate mother or gestational carrier arrangements. And so there's a sort of contradiction here between policies about certain body parts compared to other body parts. For these, the philosophy seems to be clearly somewhat libertarian, free market, my body is my property. If I want to sell it, I can, but for kidneys or parts of livers, that's prohibited by law. People have made powerful arguments for or against. In fact, this is one of those debates that seems sort of stuck in an irresolvable tension between these kinds of arguments that say people should be able to sell their kidneys with respect for autonomy. Why can't I make a decision about whether money is worth more to me than my kidney? People have argued that Markets would increase the supply and therefore save lives. And as I say, consistency and permissible practices, both for other body parts, but also for other risky endeavors. People are certainly allowed to take jobs that are associated with higher risk than donating a kidney and to be compensated for those jobs. Why shouldn't the same philosophy apply against those arguments or fears about coercion, particularly in the context of perhaps a global market where rich recipients would use poverty to coerce poor people into giving up their

Joel Roselin

organs, or a

Dr. John Lantos

more subtle and complex phenomenon of exploitation. There's an excellent article in the Stanford Encyclopedia of Philosophy that talks about breaking down in exploitation into these three different sub-components. shown on this slide,

Martha Gershun

we could

Dr. John Lantos

talk about these arguments a little bit more in the discussion, perhaps.

Dr. John Lantos

One of the proposals that I mentioned earlier on for increasing cadaveric organs is presumed consent or opt out. There are only a couple of countries in the world that have implemented that. Spain and Croatia have been doing it for a while. Spain was first. Croatia modeled their program. John Krinsky CCNY- On spain's program and you can see, in this graph spanning Croatia, the two bars and the farthest left of the bar graph over there, and they, not surprisingly, have the highest rates of cadaveric donation, you can argue whether donation is the proper word for this. John Krinsky CCNY- But. John Krinsky CCNY- They do it, the question there is one of causation versus association to implementing an opt out policy or would implementing it in the United States lead to. similar rises or would more people opt out here in the sorts of protests that we've seen say against mask wearing or COVID vaccine that is the libertarian culture that's suspicious of government mandates. What prevents an opt out policy or to take the counterfactual is a culture where there's more solidarity what permits an opt out policy and therefore allows higher rates of organ donation. The only way to know would be to test it. Whether that could happen in the US, I doubt. It may be happening in the UK, though. There are proposals to shift their model to an opt-out one. Not going to spend a lot of time on this, but the Nuffield Council of Bioethics think tank in the UK has sort of categorized different levels of libertarianism versus coercion from do nothing to eliminate choice. And this seems to be where the line is drawn in most liberal democracies. That is, we provide information. We enable choice. We guide choice sometimes through changing the default. But we don't give incentives, disincentives, or restrict choice. One proposal that

Dr. John Lantos

can be seen as a sort of market innovation in kidneys is what's been called paired exchanges or chain exchanges. These were developed by an economist who's now teaching at Stanford named Al Roth. He won the Nobel Prize in economics for proposing this. And he clearly saw it as a market approach to increase the supply of organs. The idea was if I want to donate to a loved one, but I'm not a match, if I can get compensated for donating, in this case by having someone come forward and say, I'll give my kidney to your loved one, in return you give your kidney to my loved one, and therefore we both are getting paid, if you will, for our donation, then it will increase the supply and more people will get a histocompatible organ and everybody, arguably will be better off. These were technically illegal under laws in the United States about market exchanges for kidneys. Those laws were amended to allow this sort of thing, and they've now led to not just paired donations as shown on the left, but long chains of donation that work the same way. Donor 1 to recipient 2, 2 to 3, 3 to 4, N to N plus 1.

Dr. John Lantos

And eventually circling back to a donor who gives to the first recipient. Once these are accepted, then you can ask, what about a voucher if I give to, if I as donor one give to recipient two, but don't have a recipient one, could I get a voucher in case I or my loved one wants to or needs a kidney sometime in the future? Those have been implemented, whether they violate the current anti-market laws.

Dr. John Lantos

has not been tested, but they are implemented, and nobody's been charged with a crime to date. So these are all ways that people have talked about to increase the supply of organs. Let's just go back to Martha's story just to hear about the happy ending, and then we'll talk about some of the things we learned from all this and take your questions.

Martha Gershun

So it's my favorite picture, of course. This is me and Deb immediately after surgery, the next day. I was up and walking, Deb not quite. And what you can't see in that picture, but at the foot of her bed is a bag connected to a tube connected to Deb, which is filling with perfect golden urine that my left kidney, now implanted in Deb's abdomen, started working almost immediately. produced urine and started cleansing her body of toxins. The success of our story is unassailable. I remain extremely healthy. I recovered quickly and easily from surgery. Four weeks later, my husband and I took a trip to New York City and went to three Broadway shows back when you could do things like that easily. Deb, who lives in Fort Lauderdale, Florida, has a happy, fairly adventurous life, family there, good friends. She sent me a video about six months after our surgery. She was ziplining in the Honduras with my kidney, which I have to tell you my right kidney inside me is never going ziplining. It was such a meaningful experience for me

Martha Gershun

and a life-saving experience for Deb that my conviction around writing this book and raising these issues became very elevated, that there is much good we could do in the world if we thought about ways to reducing barriers, quit assuming someone who wants to do an altruistic voluntary act is a nutcase, and eliminated financial barriers because in fact the system saves money with every transplant. A transplant saves about $150,000 over the life of the patient versus dialysis. So we have a medical intervention that is better for patients. It is better for payers, whether they're the insurance company or Medicare. And as I think I validate, very meaningful for donors. And yet we continue to make it very difficult, sort of out of history, a little bit out of stigma. And I came to believe because we're not paying any attention to it. So John and I have a couple of concrete recommendations. And one purpose for us of the book and this book tour was to see if we can get a little uptake on the policy side.

Dr. John Lantos

So in the book, we end up concluding that there are three sorts of barriers that if eliminated might increase the supply of organs, medical, psychosocial, and financial. Each of them has some wiggle room, some gray zones, and some bioethical concerns. The medical ones, I think, are the most straightforward. I think most donors would want to be screened medically and be told if they were at higher risk than usual from donating a kidney. But there are both the short-term risks of the actual surgery, and then there's concerns about longer-term risks of living life with one kidney. There are also questions about how much risk someone should be allowed to take and whether that decision should be one made by the donor or made by the transplant program. At present, the way most transplant programs work is they decide what medical factors should be evaluated. They have their own in-house screening programs that they do. Some say you need to be counseled by a substance abuse person. Some say you need to have your blood pressure under control, etc., etc. And then there's a committee that meets and decides whether someone meets their criteria for safety. This is a remnant of the surgeon's reticence to cause harm to a healthy person. But whether

Dr. John Lantos

the criteria are John Krinsky CCNY- Evidence based ethically defensible or should properly belong to the person who's donating rather than to the transplant program is a question worth addressing the psychosocial barriers, we think, are largely a remnant of this view that. John Krinsky CCNY- Donor donors, particularly donors who would donate to a

Joel Roselin

stranger,

Dr. John Lantos

the so called altruistic or stranger donors have to be a little crazy or at least are at risk. for psychological problems afterwards and so need to be carefully screened. It turns out there's not a whole lot of evidence that such screening is helpful and can identify people who are at higher risk for a bad outcome. There are a few case reports of donors who had major psychological problems, including committing suicide, usually after a donation failed. the presumption is it was associated with some guilt. Although even in those case reports, the donors had been screened by psychiatrists prior to donating and been deemed psychologically fit. So whether these attempts to predict who's going to have psychological problems, A, are ethically appropriate and B, are accurate and effective, we think is an important question and one that if they were eliminated may lead to more Donations. The last one are the financial costs to the donor, which we mentioned before. For many people, they would put donation completely out of the realm of possibility. People who

Joel Roselin

are not

Dr. John Lantos

retired, people who don't get paid sickly, people who simply don't have the money to pay for the out of pocket expenses associated with the process of being evaluated as a donor can't do it. These barriers do have some real-world consequences, it seems, although it turns out it's really hard to find good data on how many people enter the pipeline of donor evaluation, and if they don't make it through, why they didn't make it through. This is one study we found which was just presented as an abstract of a transplant meeting, but it suggests that further research is necessary. This was a center that looked at about a thousand people who called their donor hotline and said, I'm interested in being evaluated as a donor. About a third of those just never showed up when they were invited to continue the process. Nobody knows why. In the study, they tried to call these people up and they couldn't get evaluations. Only about 20% proceeded to evaluation. Of those, about a quarter were eliminated during the process of evaluation. But perhaps the most interesting finding in this study, or one interesting finding, is that

Dr. John Lantos

Black donors were twice as likely to be rejected or to not make it through the process as white donors. 19% of the Caucasians versus 10% of the African-Americans ended up donating, whether those were because of medical contraindications, which be possible or whether it was because of some of these other barriers we just don't know but we think it would be important to find out in the end we make a relatively simple proposal in the book we say that donors who offer to donate a kidney should be treated like donors who offered to donate cash to a hospital because donation and then it goes to a recipient but it's also a donation the hospitals program to facilitate transplants. Every hospital has philanthropy departments. They are very good at acknowledging, honoring, respecting, and courting people who want to give cash. Most programs don't have similar

Dr. John Lantos

perks for people who want to donate kidneys. I've never heard of a hall of benefactors for organ donors, or even the sort of simple courtesies like making phone calls, facilitating access to treatment, and making sure that donation doesn't cost the donors, they don't pay a penalty for their altruism. So with that, we will stop and happy to take questions or comments. Love to hear what people. think of some of these ideas.

Joel Roselin

Well, thank you so much, John and Martha. That was a really terrific presentation. So many issues touched upon personal, ethical, legal, medical. I am going to ask Janet to exercise the chair's prerogative and ask the first question. We've received some excellent questions in the chat. If others have questions, please share them with me in the chat and I will sort them and read them out. So

Janet Dolgin

Janet. Thank you so much Martha and John. It's a wonderful presentation with so much substance that all of us can use to think about these issues and to rethink how to reshape our regulatory schemes so that they, so that They close the gap, at least somewhat, between those in need of organs and those willing to donate organs and living donors and cadaveric donors. So John just said something that I thought was interesting. You said, Black donors tend to be rejected as donors more than white donors. So that raises about 6,000 questions, but I'm only going to ask two of them. Is that true in cases where the donation is directed to another person who is Black? And secondly, to the extent that that difference in rejection of potential donors is grounded on health issues, might it be a product of algorithms for assessing kidney health or general health that have biases deeply grounded in the way the facts spin out and then say, oh no, this person is not a fit donor.

Dr. John Lantos

Great selection of two questions from among the 6,000, and there are... many questions to be asked about this. Unfortunately, there isn't a whole lot of good research to answer those questions. For the ones you ask, we don't know. We know that diabetes and hypertension are two of the medical contraindications, relative contraindications for donors. We know that there are higher rates in African-Americans and in white folks, so it's plausible that these were medical contraindications. There's no difference in the medical evaluation for donation to a loved one, to a racially concordant donation versus a racially discordant one. And so probably the rejection rates would be as high

Dr. John Lantos

for donations to family members as others.

Dr. John Lantos

the disparity there is because of medical contraindications or whether it's, and like your second question, if it is because of medical contraindications, whether those reflect implicit racial bias rather than objective assessments of risk is one of those questions about implicit bias that has not been well studied and desperately needs some study. One could imagine having different standards for donation based on race, which could also be open to charges of racial bias. That is, why would we let a Black donor undergo a higher risk procedure than a white donor? Isn't that another form of racial bias? And responding to those, figuring out the sweet spot in paternalistic protection of donors versus respect for autonomy, I think is enormously complicated. I don't know, Martha, do you have thoughts on that?

Martha Gershun

Well, the one thing, Janet, I think in part you were referencing the EGFR numbers where the algorithm ascribes higher kidney function to African-Americans than whites for the same performance. And that number keeps blacks off the transplant list. They, in fact, with great advocacy and the National Kidney Foundation has been behind this, have finally removed race from the EGFR calculation. EGFR stands for estimated glomular filtration rate. It's a pretty good number about how well your kidneys are working. And the criticism there was that blacks did too well and therefore couldn't get waitlisted for transplants. My bigger concern around racial disparities really are class and income disparities. I think telling a white privileged woman who's never had a negative run-in with the cops in her whole life that she needs to see a substance abuse counselor is annoying, but not prohibitive. Telling the same thing to a young black man who has had faced stigma his whole life might very well make him not go further. So I think a lot of these problems aren't that black and brown donors are rejected. I think that barriers are disproportionately discouraging.

Janet Dolgin

Thanks.

Joel Roselin

Thank you both. So we have a number of really excellent questions that have shown up on the chat. And the first one I'm going to read is, from someone who has spent a good deal of time apparently on this issue. Andy Flesher is a professor at Stony Brook. He's the chair of the UNOS Ethics Committee. UNOS is the United Network for Organ Sharing, and he's authored a book on the topic. And this is a question for Martha, but I think after we hear from Martha's personal perspective, I'd really be interested in John's, broader perspective,

Joel Roselin

how would the prospect of having been offered some reward, whether it's financial or otherwise, have struck you in terms of your decision to offer your gift? If Professor Flesher were asking his question, he would add this, that he feels that the notion of offering that the notion of a transaction crowds out virtuous impulses in Professor Flesher's words. So how would you think of that, Martha?

Martha Gershun

Well, thanks for giving me the tough question from the real expert. It's intimidating. I have a couple of things to say. First of all, I want to be very clear that John and I wrote the book not to encourage incentives and encourage payment, but to remove barriers. Today, it is not financially neutral to donate a kidney. It costs you. And so our primary recommendation is to go down to neutral. Nonetheless, the issue of compensation of markets always arises. And we've been sort of forced to do even more research and develop views about that from a personal perspective if this were something that one could get paid for or other people were getting paid for it wouldn't have discouraged me at all for doing it for free i volunteer my labor regularly at a food pantry knowing that there are people who work in a grocery store i volunteer my time at habitat for humanity knowing there are people who are paid to build houses and I give away my extra money through philanthropy, through charity, like most affluent people do. One of the best

Martha Gershun

corollaries we've heard as we've been out talking was Al Roth, the economist from Stanford who essentially invented kidney chains and pairs, that when America went from a conscripted army the conscripted military service, to volunteerism, people who are compensated but not required, it didn't stop people from lining up. And just because my husband and I had enough money in the bank and his career was secure so that I could volunteer to give away my kidney for free doesn't mean that somebody without my assets, without my resources, possibly because of institutional racism, possibly because of lousy luck, possibly because they didn't go to the Harvard MBA and have the jobs I've had in my career, they should be allowed to donate too. So I'm really arguing for removal of barriers and a level set around privilege. Of course I would have donated anyway. Someone gave me an opportunity to save someone's life. I would have done it if it cost me $4,000 and I was happy to do it if it didn't.

Joel Roselin

So as a follow-up to that, is there a disincentive? If some people are getting money to donate or being compensated in one way or another, is there then for those who would do it, as you said, regardless, you can say that because there is no compensation on the other side, but in thinking about it, does the market destroy the motivation? And your example of the military indicates that It doesn't.

Martha Gershun

I think that's the ridiculous assertion. I used to work for a non-profit where I got paid a lot of money to write grants. Now that I'm retired, I write grants for free for a non-profit whose board I sit on. Of course, people will continue to do the altruistic thing. Here's the other thing. There are only 5,000 altruistic living organ donors in America today. I don't think our concern is suppressing that number. John, you may feel differently, but I feel pretty strongly, of course, Those of us who wanted to do it, particularly if I was trying to save the life of my husband, why would I not save the life of my husband for free just because somebody else is getting paid who doesn't have the money in their bank account that my family has?

Dr. John Lantos

I guess it's fascinating to me that this is essentially an empirical question that's debated theoretically by people with passionate views that their own opinion must be right and they're diametrically opposed views i mean we had an economist on one of the sessions we did who like went on a rant about how liberal philosophers who think this crowd out thing is going to decrease the supply are murdering americans because they're not allowing market forces to increase the supply and save lives and they should all be sent to jail and passionate liberals say like, of course it's gonna lead to exploitation and there's gonna be a worldwide market where rich people are just having organ farms in poor countries and there's gonna be exploitation and coercion.

Dr. John Lantos

Somewhere in the middle, it seems there's gotta be a sweet spot, whether it's making donation at least financially neutral or whether it's by, sort of trying to come up with some sort of well-regulated market. I mean, here I think the analogy to amateur sports is an interesting one and maybe better than the military, because I actually think the military is pretty exploitative and we've seen primarily poor people who don't have many other options signing up to give their lives to their country. But, you know, the sledding, NBA players compete in the Olympics somehow denigrate amateurism?

Dr. John Lantos

Would other athletes not be willing to compete because they can't make as much money as professional sports? I think for organ donation, a pilot project with a well-regulated market would be the way to get some empirical answer to this, but even to do such a study. triggers all the same reactions, because if the market's unethical, then studying whether it works is even more unethical, because it might lead to data that would encourage this unethical practice.

Joel Roselin

Great, thank you. A similar question, broader, again to Martha. What do you think are the most significant points for someone to understand when helping another decide on becoming a living organ? donor. That is, how might one, what questions might one ask? How might one help someone come to the decision that you did? And specifically, what were those discussions like for you and with whom?

Martha Gershun

So in my case, it was an instantaneous decision. When I read the story about Deb, I knew I was going to try. But I also have unique family history. I already had a beloved family member who had been saved by a living organ donation. So I knew more than most and I cared more than most. My family's life had already been enriched. I think questions I would encourage someone else considering it to think about, which I did not, and no one was whispering in my ear to help. I wish I had donated near home. I wish I had said to my recipient, I'd love to do this, but Mayo Clinic is six hours from my house and it's an airplane ride for you. If you got to get on an airplane anyway, come to where I am. the University of Kansas Medical Center does tremendous transplant work. They're well-recognized for that. A lot of the logistic financial barriers to my donation had to do with the fact that the hospital was six hours away. I think something else I would say to people is,

Martha Gershun

you're giving up control, be okay with that. And I mean, I'm a Harvard MBA who's controlled everything my entire life. is very hard for me to um to embrace the last time i had so little control is when when i was pregnant with my kids you know and that just happens when it happens but um many things happen along the way that you cannot schedule that you cannot plan that you cannot anticipate a part of my story that we talk about in the book but we did not go into length here um our first surgery attempt was cancelled the night of the surgery I had driven with my husband up to Mayo. I had spent a day in pre-op appointments and been cleared. I had chugged a bottle of laxative. I was ready to go to sleep and wake up at 4.30 to go to the hospital. And the clinic called and said that Deb was too sick and they were canceling the surgery. We had to wait for the laxative to clear my system, check out of the hotel, drive back home. My husband had to reschedule all his work stuff while we waited to hear. And then when they called, I had two days to get back there real fast. I had not anticipated that. Never in my fantasy of what it would be like to save this woman's life and how great it would feel, did I imagine a middle of the night phone call. As it turned out, you saw the picture, everything was fine. But I would say to people, you can't script this. If you're in, you're in wherever it goes.

Joel Roselin

Great, thank you. Another question, this one for John. Thank you. It's a policy question. And this is, I'm taking the chair's prerogative, which is, you went through different proposals, different ideas that other countries have done. From your perspective as a physician and an ethicist, are there legal or policy changes that you would like to see adopted that might increase the availability of

Dr. John Lantos

organs? That's a good one.

Dr. John Lantos

I think of two, and both would be, I would think of as research or pilot projects. I mean, one would be to try an opt-out versus opt-in approach, maybe try it in one state or another. The other would be to try to develop criteria for a well-regulated market

Joel Roselin

and figure out how to

Dr. John Lantos

study it. I mean, would opt-out in california or or new york lead to increased numbers of organs for donation would it lead to a backlash would family members feel um disrespected or abused by such a system

Dr. John Lantos

how would it work and similar for a program that provided more compensation i mean there are fledgling programs now, and Andrew may know more about these even than we do. But both within Medicare, there's a program to provide some financial compensation for people. It's means tested, so it's for the poorest people, but to help them with some of the expenses associated with organ donation. And the National Kidney Foundation itself has a program to pay even more to make Donation financially neutral for centers that agree to participate in the program, but people get money for travel, for hotels, and even some money for lost wages. So there are things starting to happen to make this shift. And it may be that this will play out sort of the way aid in dying or assisted suicide has played out in the United States, where for a long time it was

Dr. John Lantos

illegal everywhere and then state by state in the laboratory of the states, usually by public referendum, although in some cases by state Supreme Court decisions. This was made legal. It wasn't made legal because of a massive shift in public opinion. A lot of the referenda were 5149 against and then they tried again and it was 5149 for and that legalized it. And once it was legal, we're now getting some data on how it's working. There were many similar concerns, whether it would lead to disparities, exploitation,

Dr. John Lantos

overuse in people with disabilities or racial disparities. It doesn't seem to have. And so it seems like those sorts of programs might be a change that I'd like to see. Well,

Joel Roselin

that's a terrific place to end. And we are so appreciative. uh for your attendance at our program today for martha for doing what you did in making the donation and then in sharing that experience with not just us but with the world uh and john your perspective uh it really shows how narrative is half the story and it's only ever half the story and ethical analysis, legal analysis, only half the story. And what you presented is a very full and human story that really sheds light on a very difficult topic. And again, thank you. Thanks to all of our attendees today. And we hope that this will spark conversation here at Hofstra and wherever our participants have joined us from. Please be on the lookout for other events that we'll be hosting in the near future and join me in silently applauding our presenters. Thank you both and be well and come back and join us again.

Dr. John Lantos

Thanks so much for having us. Yeah, this was great.