 Good afternoon everybody. Thank you so much for attending today. I am just delighted and honored to introduce our speaker today, Dr. Laney Friedman Ross, MD, PhD. Dr. Ross is the Carolyn and Matthew Bucksbaum Professor of Clinical Medical Ethics. Let me just say that Carolyn K. Bucksbaum is with us today, as some of you can see on her picture. And we're so honored to have K. Bucksbaum joining us for Laney's talk today. Laney is also a professor in the departments of Pediatrics, Medicine, Surgery, and the University of Chicago College. Laney is the co-director of the University of Chicago Institute for Translational Medicine and is the associate director of the McLean Center for Clinical Medical Ethics here at the university. Laney Ross earned her A. B. from the School of Public and International Affairs at Princeton University in 1982, then received an MD from the University of Pennsylvania Perlman School of Medicine in 1986 and a PhD in Philosophy from Yale in 1996. Laney trained at the Children's Hospital of Philadelphia and at Baby's Hospital of Columbia University, which is now called the Morgan Stanley Children's Hospital of New York Presbyterian. Laney Ross came to the University of Chicago in 1994. She's a primary care pediatrician at the Comer Children's Hospital at the University of Chicago. Her research portfolio focuses on ethical and policy issues in pediatrics, organ transplant, genetics, and human subject protection. Laney has published five excellent books, more than 200 articles in the peer-reviewed literature, and another 200 commentaries, editorials, and invited manuscripts. Laney Ross was introduced to the ethical complexities of living donor kidney transplantation when the ethics pager was called by Dr. Steve Wardle, who had previously been at the University of Chicago, but had moved to Cincinnati, when he called about the ethics of exchanging kidneys between incompatible living donor kidney transplant recipient pairs. This collaboration, which believe it or not involved me and David Rubin and Michelle Josephson and Dick Thistle Thwaid led to a publication in the New England Journal of Medicine. And since then, and Laney was of course involved in that publication, Dr. Ross has published numerous articles on transplantation ethics in the New England Journal of Medicine, the American Journal of Transplantation, and the journal called Transplantation. Laney published the second edition of a book called Transplantation Ethics with Bob Beach at Georgetown University Press in 2015, and last month she published a new book called The Living Organ Donor as Patient Theory and Practice, which Laney co-authored with Dick Thistle Thwaid. It's an Oxford University Press 2021. That book was funded by both the National Library of Medicine Grant and a Robert Wood Johnson Investigator Award in Health Policy. Today, Dr. Ross's talk is entitled, it's an incredible title, you ready? 1952-2022, 70 years of ethical challenges in living organ donor transplantation. I am honored and delighted to introduce you to Dr. Laney Ross. Thank you very much, Mark. Let me just get to the first. Everyone can see the screen and they can hear me. Thumbs up. Yep, great. Okay, so thank you, Mark, for that generous introduction. And so yes, the title of my talk is 70 Years of Ethical Challenges in Living Kidney Donor Transplant. Begin with two disclosures. I have ownership in GE and Bristol Myers Squibb. I will not be discussing off-label products. So I have four objectives for today's talk. The first is to review the history of living donor kidney transplant, the second to examine the ethical considerations of living donor kidney transplant in the early years, then propose an ethics framework to address the ethics of living donor kidney transplant, and then apply this framework to a case study. And so let me begin first with a quick history. It actually begins in 1952, although we all like to in the U.S. talk about 1954, actually begins with Dr. Jean Ambuquer and Louie Michonne at the Hospital Neckar in Paris, who performed the first living donor kidney transplant from a mother to her son. And that graph actually functioned well for three weeks, despite the fact that the only immunosuppressive agent available at the time was cortisone. In 1954, Dr. Joseph Murray, here in the Peter Brent Hospital in Boston, performed the first living donor kidney transplant between identical twins. And that's very important that those identical twins, because it obviated the need for immunosuppression. And that kidney would go on to last for about eight years until the recipient developed kidney problems unrelated to the surgery. In 1959, we start getting the first of many immunosuppressive agents that will help in making graphs last longer. This was Asa Thyoprine, was developed as a chemotherapy, but actually served well as an immunosuppression. So by 1960, both Murray and Ambuquer's team in Paris had successfully transplanted kidneys, not only between identical twins, but also between fraternal twins. And people weren't sure if there was something special about fraternal twins, whether there may have been some exchange of tolerant genetic blood cells during gestation, meaning that this couldn't be necessarily generalized. And yet then between 1960 and 1962, in Paris, Ambuquer and Rene Kuz performed four successful transplants between non-twin recipients. They conditioned those bodies with total body irradiation. But this was real proof then that chimerism was not necessary for success, as was feared with the fraternal twins. And is really the beginning of opening up the field for living donor transplantation. And so in 1963, the National Academy of Science sponsored the Human Kidney Transplant Conference, which was actually focused on the state of the science. And at that meeting, Murray establishes an international kidney transplant registry. And you can see by 1965, he's already reporting on 719 transplants and 672 persons from living and deceased donors from centers in the US and internationally. And in 1966, the SEBA Foundation sponsors an international interdisciplinary conference to examine the ethical and legal questions regarding the nation field of transplantation. And that's published in a book called Ethics and Ethical Progress, with special reference to transplantation. So it's sort of incredible how quickly the field grew. And there was a realization of all the ethical issues that the field was creating. So what I want to do now in part two is to focus on this 1966 SEBA symposium. For those who are interested, you can Google and you can actually obtain the book for free as a PDF on the web. So here are the eight issues that were raised at the 1966 SEBA symposium. The first wasn't to use the words of the symposium. Is it ethical and legal to maim an individual for the benefit of another? Number two is how to ensure that consent is voluntary and informed. The third looked at the prisoner as donor, then the identical twin as donor, then minors as donors, health risks to donors, the possibility of working markets, and then other economic barriers. And I want to go through each of these in turn to really show how, in a sense, 70 years later or in this case, 55 years later, not much has changed. So the first is, is it ethical to maim an individual for the benefit of another? And at the conference, Murray specifically said, we make a basic qualitative shift in our aims when we risk the health of a well person, no matter how pure our motives. And so to address the fact that, as he said, no matter how pure our motives, he placed great emphasis on donor consent. But he also thought or argued or maybe hoped that living donation would be merely a temporary solution. As he wrote, and as quoted at the conference, all clinicians working with kidney transplantation should strive for better disease donor organ procurement so that the day will come when even the identical twins will not require a living donor. So clearly, this was meant to be a temporary solution. Of course, today, there's much greater acceptance of living donation as a long term solution. And we've moved from twins to family members to friends and to strangers, and then from directed donation to paired exchanges and chains. And I'll just take a brief little excursion, just explain what these paired exchanges and chains are, since it really was, since the ethics of it really did begin here at the University of Chicago. So here's the typical donor one, if they are compatible with the recipient, they can just donate. And traditionally, that was usually siblings or other first degree relatives. Actually, Art Matos in 2000 suggested, well, why not allow strangers to donate to other strangers and raising some interesting ethical issues as well, but in some ways also obviating some issues. There was no pressure on an individual to walk into a transplant program and say I want to donate their individuals who are related may feel some degree of pressure to help their loved one. But here at the University of Chicago, we looked at the case of what happens if donor A and recipient A are ABO incompatible and can't donate and donor B and recipient B are ABO incompatible. So they can't donate to each other, but the donor who's A positive could donate to the recipient who's A positive and the donor who's B positive could donate to the recipient who's B positive. And this was the beginning of the idea of the living donor kidney paired exchange, which as Mark mentioned in the introduction, we talked about all the different ethical issues that could be raised. And it was a collaboration of a whole group of us here at the University of Chicago, myself, Dave Rubin, Mark Siegler, Michelle Josephson, Dick Thistlethwaite, and Steve Woodall. Combine those two now. Take that stranger donor and have them donate to a recipient who has a living donor, but that living donor is incompatible and you can then go from just a paired exchange to what's called a domino chain, where the last recipient can be someone on the waitlist who may or may not have actually a living donor of their own. And this was then published in 2006. And these exchanges, stranger donors, as well as domino chains actually account for about 15 to 20% of all kidney transplants that are done in living donors today. The next issue that was raised in 1966 was insure consent is voluntary and informed. As I said, there was a real concern about the pressure that living donors may feel. And here are some quotes from that meeting, where Michael Woodruff, a surgeon from Edinburgh wrote, we never accept a yes at our first discussion. I think that our approach provides adequate safeguards against coercion. And Amberge, the surgeon from Paris, actually had a psychiatrist during the transplant team to determine, quote, whether the desire of the donor is stable, well-balanced and rationally motivated, and to uncover any possible pressure coming from the other members of the family. So it wasn't just Murray who was worried about the potential for undue pressure on living donors. And at that time, a medical excuse was offered to unwilling family members. They would just say that there was an incompatibility or that the donor wasn't healthy enough to be a donor and things of that sort. Today, we've actually formalized much more an entire team to work with the living donor, called the living donor advocate and social work evaluations, to really make sure that there isn't undue pressure or inducements and to determine that consent is informed and voluntary. Some programs require a psych assessment, some required for particular types of donors. And yet this notion of voluntary and informed really gets challenged by chains and exchanges. So remember in the old days, if I was ABO incompatible with my brother, for example, then I wouldn't be able to donate. But now the fact is, I might not be able to donate to my brother, but I might be able to donate to your sister, and you could donate to my brother. And so all of a sudden, the medical excuse of being ABO compatible no longer exists. And so lots of concerns with the expansion of living donation about ensuring the voluntary and informed consent of the living donors. The prisoner is donor. So this was interesting. In 1963, again, all of these data are being collected by Murray, Tom Starzell describes 12 transplants at the University of Chicago, two involved deceased donor kidneys, eight were intrafamilial, and two were unrelated. One was a volunteer who responded to a newspaper ad. And one was a prisoner who in the article, it was mentioned that 12 days post-operatively disappeared from the ward and it's not been seen since. Later that year, they went on to describe 40 kidney transplants, nine of them involving prisoners as living donors. The 1966 SEBA attendees were quite critical of allowing prisoners to serve as donors. David Dow, who was a legal scholar in Oxford, wrote, I agree the pressure on the family donor may be far greater, but it is a pressure consonant with the dignity and responsibility of free life. So Starzell was sort of arguing back that his prisoners were often people who were about almost on the cusp of parole or being freed, and they were doing this in their own way to sort of pay back that there was no coercion. And that these individuals being that they didn't know the recipients actually felt less coercion. And Dow wanted to argue, as I read that the pressure on the family donor may be far greater, but that's sort of parse and parcel with being a member of the family. Nevertheless, by the time the proceedings were published, Starzell actually was convinced by his peers and stopped recruiting prisoners to serve as living unrelated kidney donors. And today in the US prisoners may donate to first degree relatives on a case by case basis. It's quite rare, not to strangers. And I'll be talking about that actually as one of the case studies. The fourth issue, as I said, was the identical twin. Here's a quote for us from Sir Robert Platt, who says, it is the only situation in which this operation is really likely to be a lasting success. You have to remember this was being done very early in the era of immunosuppression. Secondly, there is, as has been said, only one donor and the onus is very much on him. Thirdly, identical twins often have a great understanding between each other, which might make the volunteering more easy or more difficult. So acknowledging that some twins are, you know, get along great and other twins don't, but that there was really only one individual who could be the donor. And so a lot of pressure on that individual. And one concern that was raised at the CBO was whether an identical twin may actually be at increased risk of developing end-stage renal disease themselves. To the extent that kidney disease is genetic, there's a good reason to think that if your identical twin developed kidney disease, that you might as well. And in fact, today, if you're asked what's the greatest risk of going into kidney failure, it's the fact of having a first degree relative who went into kidney failure. Fascinatingly that today we still don't have evidence about whether an identical twin is at increased risk of end-stage renal disease if his or her twin has end-stage renal disease any more than any other family member. We also don't know whether this risk is sort of increased if he or she undergoes a unilateral nephrectomy. In the US, the evidence is lacking because there's no mandate or registry for long-term follow-up. And we can talk about that in the Q&A as well. The fifth issue was minors and donors. And this was very contentious back in 1966 with attendees taking opposite sides about the permissibility. So Dowd, the legal scholar who we've already met, said children should on no account be donors and there should be no cheating by maintaining, for example, that the child would suffer a trauma if he were not allowed to give his twin a kidney or whatever it might be. The likelihood of trauma incidentally will be greatly lessened if the law leaves not the shadow of a doubt that its transplantation is here out of the question. The case will then be no different from where a twin dies from pneumonia. Bad enough, but with no scope for offer of a sacrifice, disappointment, self-torture. In contrast, Murray here in the US was willing to allow twins as young as 12 to 13 years of age. And there are court cases because he had to go to court to get permission to do those. And there are a number of cases that he did as early as 1957. So three years after his first living donor liver transplant between the Herak identical twins. A British physician, Platt, also argued in favor of allowing adolescent identical twins because of both the high likelihood of success and because of the trauma, it's the healthy one did not offer kidney at the age of 15 say. Today guidelines vary. An international systematic review found that 27 of 39 guidelines endorse an absolute prohibition of living kidney donation by minors. Although 12 guidelines basically would exceptionally allow living kidney donation by minors provided that adequate safe parts are put in place, including an assessment of the minors autonomy and maturity, authorization by an independent body, assuring that the anticipated psychosocial benefits outweigh the medical and psychosocial risks for the donor and the restrictions to the situations of last resort. Interestingly, I've gone through the literature and the youngest living donor to an identical twin was performed in 1972 between seven year old twins here in the US. The sixth issue was and I should mention that actually Dick Thistlesway and I wrote a statement for the American Academy of Pediatrics really arguing against the role of minors as donors. We did allow for rare exceptions and gave very stringent criteria that I can share with those afterwards. The sixth issue was what are the health risks to the donor? So in 1966, while some attendees worried about whether living kidney donors were at increased risk of developing end stage renal disease, most were not concerned about the health risks from the unilateral nephrectomy. Willard Goodwin, a urologist from California, said the removal of a kidney has been described as a terrible thing, but it's not so serious as it's been made out. Woodrow, a surgeon from Edinburgh, said to be without a kidney in most cases is not a disability, certainly much less, for example, than being without a big toe if the other kidney is all right. Although later on he did concede that there was a small perioperative risk. And others were concurring, pointing out the life insurance companies did not increase rates for individuals with a single kidney. And that was really it. There were not many other health risks were discussed. And I have to say today the perioperative mortality is estimated to be about 0.03%. So quite small and significant morbidity is counted to be even less than 5%. But long-term health complications have not historically been systematically followed, although there's now evidence of increased risk of end stage renal disease, pregnancy complications, and hypertension from being a living donor. The issue of organ markets was actually raised by a science writer, Gerald Leach, and he wrote, since it's ethically acceptable to sell blood, is it also ethically acceptable to sell major organs? He pointed out that we already pay money to people to face major risk to health and to life. Why is this any different? But there was broad consensus by all the health care professionals at this meeting against paying for organs, as Roy Colm, the surgeon from Cambridge wrote, the question of financial consideration in organ transplantation is very unsavory and it is most deplorable to consider it. Nevertheless, he did note that it had been sought out informally by some candidate families. And as he said, there have been cases and there'll be many more in which families for one reason or another have not wanted to donate a kidney to their afflicted relatives and have sought out somebody in need of money to give a kidney and be paid for it. Today, organ markets are illegal almost universally, with the exception being in Iran. And however, illegal paid organ trafficking really persists. The transplant literature today is much more divided about developing a market, although a large majority do remain opposed to organ markets. However, there is a lot of consensus that we shouldn't have economic barriers that prevent a living donor who wants to involuntarily and in a formed way gives their consent. And so this was also considered back in 1966. So George Shreiner, a nephrologist from DC wrote, somebody going in for his own medical care might be willing to handle the expenses, but the volunteer has gone further. In a sense, we have a higher obligation to him. So basically, describing the concerns that other CB attendees were also about the problem with their being cost to the donor. And some spoke specifically about getting donors insurance in case there were any complications. A public health physician from Edinburgh, John Brotherson raised the issue of paying for the consequences to the donor of giving the organ. They may have heavy travel charges, he may suffer loss of earning, and there may be other financial implications. He even went further and pointed out that there were no mechanisms for, quote, compensating the widow and orphans if the outcome is fatal to the donor. Here in the US today, there are studies that show that there are significant out-of-pocket expenses for donors. And there's also broad support for removing those financial obstacles to living donation. But we haven't yet established uniform and universal methods to cover those expenses. So basically, when you think about the eight issues that were raised in the comments by the CB attendees, it's basically the more things change, the more they stay the same. Or as Keith Rimsma, a certain of the US, summed up the conference, the experience cited at this meeting illustrates that medical science has influenced ethics, just as ethics has influenced medical science. And so it's our responsibility in the next 50 years that the ethical consideration shouldn't lag behind the scientific advances in transplant, but instead must keep pace with, if not proactively predict them. And this will best be achieved by transparency and innovative developments and the inclusion and engagement of individuals from a broad range of disciplines in designing research particles and developing policy and practice guidelines. And to the credit of UNOS, the United Network of Organ Sharing, which does a lot of the organ transplant policy here in the US, all of their committees have individuals from a broad range of disciplines and also have a significant number of stakeholders from the community. And I think that's really important as we talked about these policies that we have that broad engagement from both academia, industry, as well as the families of organ donors, as well as recipients themselves. So now I want to move to part three. So I've talked about the earliest history, then I've talked about the CBER meeting. And now I want to talk about the voices of living donors from the 1960s, individuals who are not invited. Here is just a list of all the people who attended the CBER conference. It's notable for the lack of women. It's also notable for the lack of the living donor. And so I want to talk about a paper that I wrote with then a medical student, now a psychiatrist, Jackie Wang, my collaborator, Dick Thistle's way to myself. And it's called adding another voice to the living donor kidney transplant discussions at the CBER symposium of 1966. And what happened was I have been collecting samples of living donors who go into organ failure, who go into kidney failure themselves. It's not common, but it happens. And it actually happens that we don't know how many living donors have gone into kidney failure. Actually, we don't know how many people have served as living donors. So although Murray was keeping track internationally of transplant registries, he was really focused on the recipients and sometimes didn't even know if the donor was living or deceased. But there was no requirement to actually keep track of living donors. And so it's not until 1994 that you know this organ, the United Network for Organ Transplant here in the US makes it mandatory that we keep track of living donors. And so from the 1950s to the 1990s, we don't know how many people served as living donors. We still don't actually have a registry of living donors. So the only way we know that a living donor has gone into kidney failure is that in the mid 1990s, UNOS decided to give priority to individuals who had once served as a living donor and now we're in end stage kidney disease. So we have some idea of how many people went into kidney failure who were living donors after 1994, but it's actually incomplete because if you were a living donor and then go into kidney failure, if you choose not to get listed for a kidney transplant, we don't know you exist. So we have the US RDS or the renal, the renal dialysis list, but they don't keep track of how many kidneys you have or whether you are a former living donor. So we actually don't know the numerator of how many living donors have been, a denominator, how many living donors have been, nor do we know the numerator, how many have gone into kidney failure. So I've been collecting with the help of a grant from the CTSA, I've been collecting samples, blood samples and medical histories from individuals who were living donors. And while I've been trying to get larger funding to do something interesting with these blood samples, I've hired students, gap year students, medical students to work on supplemental projects to an ongoing study that's actively enrolling these individuals. And so one supplement what we did was we decided to look at the impact of health insurance on living donation and what were the attitudes of individuals who donated and then went into kidney failure quite quickly. And so from this study, we went back to living donors who had participated in our main study, which was giving a blood sample and medical history. And we asked them to tell us about lacking health insurance at the time of donation. And so we asked them if they would agree to tell us their stories. And 18 individuals met our inclusion criteria and were invited to participate in a 60 to 90 minute semi-structured qualitative interview. And after 11 interviews were completed, well, it became noticeable that we had two participants who had donated in the early 1960s when kidney transplant was still highly experimental. So it wasn't covered by insurance. Most of them were being done by grants or even by the institutions for the prestige. And so we actually recalled them, rewrote at the IRB and got their permission to do a specific study just looking at them. Both of them agreed. And as I said, we then we asked a few follow-up questions. And what I want to tell you is their stories, because they're two very different stories. They're both beautiful stories. I don't use their names. And that's to my chagrin because both didn't understand why I felt it was necessary to preserve their privacy and confidentiality. But FB is from Colorado who donated in 1963. So in April 1963, FB's twin brother fell ill during a high school track meet. And I'm going to read these stories because there's no way I could capture all the nuances without it. When he was diagnosed with glomerulina frightis, the family was told they were having a new program in Colorado and they were going to do transplants and they were doing kidney research. So TB went to Colorado and began hemodialysis. And when the Colorado team learned that TB had a twin brother, they told them, we need to get him up here and talk to him about living donor kidney transplant. So FB, a 17-year-old white male of Spanish ancestry, traveled from a neighboring state to Colorado in the back of his uncle's pickup truck. The legal age of adulthood in Colorado was 21 at the time. So his mother had to come up to sign some papers. His workup included several skin grafts to confirm that they were actually identical twins. He had blood work through members of renal ultrasound being done and meeting with a social worker to ensure that he was psychologically fit. To quote FB, she was brand new at it because it had never happened before. Maybe just one more time before that. If people could really go through a mental stress of donating an organ because the surgery was pretty painful actually, they gave you that old scar. And he talked about the scar because at that time, we basically opened them up from their belly button to the back. He then went on, he said that he had this additional experimental procedure where they put him in a bathtub full of ice, which he was told would occur during the surgery. When asked if he was told about any other potential risks and benefits, he responded, let's say, oh, at the time when I went through it, they didn't tell you about any risk because there was nothing ahead of you, meaning that they didn't know because nobody had actually gone through this and they didn't have people to talk to five years, 10 years after having donated. He described community meetings involving clergy and mental health professionals who did discuss the ethics of living donor transplant more generally. And finally, the transplant team went to the Colorado legislature both to ensure the wording of the law that it was legal to do transplantation, to quote main one healthy individual for the benefit of another, and then to get a $20,000 grant and state funding so that the brothers would not have to pay for any of the surgeries or follow-up care. This whole process took several months and by the time of surgery, FB was 18, but again, at that time, legal consent in Colorado was 21. So the procedures were successful and the brothers were told to remain in Colorado for a whole year because the transplant team wanted close follow-up and transportation back and forth was difficult and expensive. So they actually built like a special living unit at the hospital and then they sometimes stayed with nearby relatives. And after the first year, they continued to return several times a year for follow-up by the Colorado team for the next 25 years. After donation, FB experienced difficulty finding employment as well as health insurance, specifically citing his kidney donation as the cause. He had been enlisted in the National Guard, but the minute we had surgery, they called him for F and indicating that he no longer met the standard for military service, tried to get a job and he had a hard time. As he said, they said, you're just not insurable because of your health. You only have one kidney. We can't afford to take that chance on you. And so because of all that, he eventually becomes successfully self-employed, but still experienced multiple challenges maintaining health coverage from getting dropped, as he said, like a hot potato to paying high premiums and being forced to join a special insurance pool. FB then developed insulin-dependent diabetes as did his twin brother in the late 1980s. He also developed hypertension, which eventually led to end stage renal disease in him, the donor. He required dialysis about 26 years after donating, remembering it as kind of disappointing in a way because they never thought it would happen to me. My heart just went down to my knees. His original transplant surgeon had moved to Pittsburgh in 1981 and FB contacted him and his surgeon said, Trantry, you're care there. And so after three years on the wait list, FB received the deceased donor kidney in Pittsburgh in the early 1990s. FB's brother was also cared for Pittsburgh, where he underwent a deceased donor liver transplant and another deceased, a second deceased donor kidney transplant in 2010, 47 years after his original living donor graft from FB. FB's first deceased donor transplant lasted until 2007 when he had heart surgery and he stated that the contrast eye damaged that kidney and that he was back on dialysis. But this time, because in 1994, they changed the rules, he was given special priority points in order to get a kidney quickly. So the first time he had to wait three years, this time he only had to wait a few weeks. And he said he felt honored actually, it's kind of like getting the purple heart, you know? I said, gosh, how lucky can I be? So for both of his transplants, FB did not seek a living donor kidney. And when I asked why, he said, relative donors are pretty rough. They're whining, they're griping, they're halving the recipients all the time, take care of the one you got, you shouldn't be doing this, you shouldn't be doing that. And he contrasted that with ones who got a catavaric donor who were fine, nobody was bugging them. He had become over the years basically an advocate and somebody who transplant programs would tell, call this person if you're thinking about being a living donor until he would talk to lots of potential donors as well as recipients, giving just sharing his life experience. And these are the stories that he was hearing. So he described his decision to donate going back in time as no question. I said, I'll do it, whatever it takes. So it's no questions asked. And he was also motivated by the status of TB's identical twin. I did it because I was convinced I could do it. I was the one that could do it. And even now at the time of our interview, he said it was all worth it because he helped his brother live 52 years. He's still breathing air. That's the reward. It's the years I'm talking about. That's the reward. I want to contrast FD story, whoops, with PS story as a, I'm sorry, just to finish up FD story. As I said, he's been a community activist. He's proud to have been one of the first and he knew that it was only experimental. And his advice to potential donors, if the person you're going to donate it to doesn't make it, don't feel like it was a waste of time because it wasn't, you did what you thought was right, or you're thinking what you're going to do is right. And that's the only advice I can give them other than take care of yourself afterwards. You've got to remember you're only running on one now. Contrast that with PS. And his story comes from Mississippi in 1964. So in 1964, PS, a 21-year-old African American male, received a call from one of his sisters who was living in Mississippi where he'd been born and raised. Their oldest sister, AS, was an end stage renal disease and needed a living donor kidney transplant. PS recalls being asked to donate because the rest of the sisters and brothers had obligation and I didn't at that time. By obligations, he meant that they had families and family responsibilities. Although he had fathered a child, he was not involved with the mother or with the child. He was living in the Midwest, working in construction. He had dropped out of college hoping to become a professional football player. PS remembers making the decision to donate immediately with no hesitation, describing himself as always having been a giver. If I can help you, I will. I'll do it again if I could. He did not feel pressure from anyone to donate. He left his job and went down south by bus to Mississippi where a medical workup was done. And when the workup was done, he was found to be a match. He does not remember anyone from the hospital asking him about how he felt about the donation, stating it wasn't any reason in my book to talk about it. However, he does recall being told that he was one of the first living kidney donors at the hospital. And that quote at the time in this country, transplantation was experimental. Within a week of arriving in Mississippi, PS donated his kidney to his older sister whom he called the second mother because she had helped raise him. Their biological mother died actually postpartum complications of a younger sibling when he was a toddler. AS, his sister did well for several days, but she died on day seven. And PS knew she had poisoned in her blood and someone had mentioned hemorrhage. And so what was fascinating in this case was that I actually said to PS, he kept saying I was number eight. And I said, so if I go and look up your surgeon and see if he wrote some articles about his experience with doing transplants, I might locate your sister's story. Would you want me to do that? And would you want me to share it with you? And he said yes. And so all he had known at the time when we had talked was that his sister died from poison in her blood. What I found in the medical literature was that his sister had actually developed massive gastric bleeding, which the transplant plant team had ascribed to the high doses of prednisone she was given to prevent rejection. And the transplant kidney was actually functioning at her desk. And it led to the transplant team describing in this article that they would start a strict ulcer regimen afterwards. And they actually reduced the amount of steroids they were giving to avoid similar complications. And what an incredible moment when I explained to him that his kidney was working at the time of his sister's death, he hadn't understood what they had told him about his sister's death. And he always figured that his kidney had given up on her. And it changed his whole attitude when he learned that his that his kidney was still functioning in his sister. And that what they meant by hemorrhage was that this GI bleed. P.S. described his reaction to his sister's death. It's a hurting feeling. But growing up in church, I know when the Lord's getting ready to bring you to him, he does it. There isn't anything anyone can do about it. And later he says that I was glad that I gave her a few good days. He then attends her funeral and goes back north. He returned to Mississippi about one month later by bus for one follow up visit. There were no other interactions between him and the transplant team. And he describes the prejudice in the area where his sister lived. And he says, quote, they dealt with us as if we were royalty, gave us the best respect that you could ask for. They didn't treat us like we were black, they just treated us like we were patients. When asked if the team should have done anything differently, P.S. responds, I don't know because I did a lot of research afterwards, and they just didn't have the knowledge and equipment. It was new to us. After a pause, he continued, so I don't have any far as I'm concerned. They did a good, a great job with me and my sister. It was just that they didn't have the equipment that they have now. P.S. denied any financial difficulties, although he then explained that he used his savings to finance the trip to and from Mississippi. He'd originally saved this money to travel to different cities for football team tryouts. However, upon return to the Midwest, he didn't work for almost one year because no one would give him advice on how long he should refrain from working after an effect me. As he explains, like I said, it was new to the doctors themselves. So they couldn't tell me whether to go back to work in five weeks or 10 weeks or what. He remembers not being able to get social security assistance because, quote, if I weren't working, I couldn't get any help. And so during his year long recuperation, he stayed with another sister in the Midwest and other family members and friends helped out. Everybody would support me, you know, in their homes and whatnot. Eventually, he returned to his old job in construction. He successfully played semi-professional football for about eight years, but never did make the professional lead, which he attributes to a small size. P.S. notes that he lacked health insurance off and on in the years after donation. When he did have coverage, it was usually through his employer, although he'd make a point of getting his own insurance. I just knew I should have some insurance. He was diagnosed with diabetes in 1984, but was able to stop taking insulin and oral medications after one year by making lifestyle changes and getting his blood sugar under good control. About 30 years after his donation, his remaining kidney failed. He explains this is my fault for not taking care of my body like I should, including having sweets and alcohol. He began dialysis in 1998, two years after UNOS began to give points to former donors, but he was on the catavaric waitlist for five years when a new administration at the dialysis center where he received this care discovered that he had never received his priority points for former living donors. And so once that was noted, and he was given those priority points, he literally got a kidney within a week. And he wanted to get mad, but he then says it wouldn't help at all. And so he just kept going. Finally, as I said, getting a deceased donor kidney. Of note, P.S., when we asked him would he accept a living donor, he said he would have no problem, but no one in his family volunteered. Nobody talked to me about it. So I didn't bother anyone. As for the UNOS priority points, he viewed it as respecting the person that did that, that did the donation. And then if he needs one, they give him some compensation. I like that. I think it's fair. P.S. does not express any regret regarding his decision to donate. And clearly states, I do it again. If I could, his advice to others thinking about donating, if you do something like that, meaning living organ donation, do it from the heart. These are two of the most incredible men that I've spoken with. And I just want to talk about what lessons I think we can all learn from F.B. and P.S. So first to compare their stories, right? So both donated to siblings in the early 60s. Both were among the first living kidney donors at their respective hospitals. Both lacked health insurance at the time. Both had strong family support post donation. Both developed end stage renal disease over two decades later, which becomes very important since our rules are to follow these donors for at least two years, not two decades. The differences is that one participant developed a lifelong relationship with his transplant surgeon, while the other only had a single visit. One remains active in transplant activities, and one sibling recipient is still alive while the other died seven days after the donor transplant occurred. But both donors believe the outcome was positive for their recipients and themselves despite their subsequent development of end stage renal disease. So the stories in relationship to the sebus symposium, right? They both describe transplant as experimental. The sebus symposium also reflected on the experimental nature of the kidney transplant. And in fact, there's a lot of talk at the SEBA meeting about the Nuremberg Code, the declaration of Helsinki. There was no institutional review board, which wouldn't develop until later in the 1960s. And US federal regulations wouldn't be promulgated until 1981. But I don't think that IRB would have changed anything. These individuals were being told the best of the knowledge that was known in time, which was pretty limited. So what are the five themes from the SEBA symposium to which these donors' narratives would have contributed? And the five that I want to discuss are the pressure to donate, the special donor categories, donor health, the socioeconomic consequences of donation, and the lack of regret. So a recurrent theme at the SEBA conference was how to ensure that the living donor was acting voluntarily. And so the SEBA attendees, particularly Joseph Murray, said the possibility of intrafamilial pressure, when in its most malignant form, might be directed towards a specific family member on the basis of his or her presumed expendability. And Hughes de Wardner, an internist in London, said, it's a very important prerequisite that a kidney donor should really volunteer. If family pressures imposed on a family donor may make it difficult for the doctor to distinguish the true volunteer. And compare that to what FBNF PS said. They both said they felt no pressure at all to donate, although they then turn around and say they were chosen. PS also thinks he was asked to donate to his ill sister because he had no obligations in contrast with his siblings who were married with children. And as he states, regardless, he was eager to help. In contrast, the FBNF understood he was chosen because there was no really good suppression at the time and he was quote unquote the only one. So given the possibility of this undue influence by families, many SEBA participants spoke of requiring donors to undergo some sort of mental health assessment to ensure that donor was psychologically fit and not feeling coerced. And the SEBA attendees, the surgeon from Paris, Dr. Ambuje, stated that all potential donors met with the psychiatrist and that they only approved about three of every five potential donors. And Woodruff basically also said we never accepted yes at our first discussion. So there were attempts to really make sure that individuals were doing it voluntarily. SB recalls meeting with the social worker, remembering that she was brand new and didn't even know what to ask. And he also said that it took several months because they had these meetings all at the community level with clergy and community and even legal involvement. And PS doesn't even recall speaking with a social worker or a psychiatrist and more generally does not remember any member of the transplant team asking about family pressure or his emotions around donation. He reports that they only asked him to undergo a medical workup to see if he and his sister were in an unilogical match and trying to do it in short as time as possible as they knew he'd been traveling from the north. So while our participants expressed no pressure, when I listened to it, you might perceive that there was some pressure because they both described being quote chosen. And that one could argue undermines the voluntariness and yet on the other side, one could argue that these are the pressures that many of us feel in different aspects of our lives and sort of a normal part as has been said by one of the SEBA attendees as part of the normal relationships within families. Nevertheless, to try to minimize that today, this mental health assessment and living donor advocacy are integral to the donor evaluation. But the cautionary warnings still remain relevant today. The issue of minors. So again, if you remember, I pointed out that many of the SEBA attendees would not have permitted donation by a minor, but they were sort of a split group. So FB and PS were actually young. PS was 21, which was the age of majority FB donated, he was 18. So he was still considered minor at the time. But as I mentioned, Murray had already been going to court to get minors to be able to participate. And so again, rare now, but was happening throughout the 70 years that I've discussed. What about the pressure to donate for the identical twin? So there was some real concern, particularly before immunosuppression, that in a sense the identical twin was sort of the only one. And that was described by Sir Robert Platt. It's the only situation in which the operation is really likely to be a lasting success. And Murray actually talked that people were strongly advising him not to do it because of the concern that there was no real sense of voluntary donation. This twin is no choice because he was the only individual on earth who could donate. So FB say to when his brother's transplant team found out he was a twin, they said, we need to get him here and talk to him. And he was very proud of his singular status. I did it though, because I was convinced I could do it. I was the one that could do it. So should there be exceptions for twins? And one reason to make an exception for twins was that you didn't need immunosuppression. But that benefits the recipient. That doesn't have any impact on the donor. So one reason not to make an exception is that the identical twin may actually be at increased risk of developing end stage renal disease. And that was at least brought up by Dr. Starzell as well as by Dr. Brotherston. Now had FB and PSPIN at this meeting, they could have talked about those issues. Now it's only in hindsight that we question the vulnerability of such individuals and their ability to give a voluntary and informed consent. Today the guidelines are very restrictive about minors. Obviously we still do allow living donor twins. And in fact, living donor twins have donated many different organs, not just kidneys, but everything, including in the past year, a test is being donated from one brother to another. What we're known about health risks? The SEBA attendees only consider short-term health risks, the hazards of dental anesthesia and major surgery, and assume that the long-term health risks were presumed to be negligible at most. And they were assured by the fact that life insurance companies didn't charge more if you had one or two kidneys. But both of our donors experienced difficulties. They both knew that it was experimental and acknowledged that they weren't told about risk because there was nothing known about it. And yet both had difficulty getting health insurance. And if you fast forward half a century, we also now, as I mentioned earlier, are aware of the mounting evidence of some long-term health complications. They're uncommon. I don't want to make it that every living donor has health problems because most don't. They're uncommon, but we at least need to acknowledge it because if we want to give an informed consent process, we need to know what those risks are. So donor health, are they a volunteer or a patient? Dr. Murray's description about the first living donor reveals that he sees the donor as a volunteer. This is what he wrote in the SEBA symposium. The donor, a 23-year-old intelligent person, asked a very pointed question. Would the doctors at the Peter Brent Frigum Hospital be willing to take care of him medically for the rest of his life if he gave his kidney? We stated that we neither could nor desired to make a guarantee of that sort. We were there to help his brother. And if he, the prospective donor, could help his brother, we felt that the chance of success was quite good. We then asked the prospective donor if he felt that we physicians and surgeons at the Peter Brent Frigum Hospital would ever refuse to care for him in the future. And he answered, of course not. Nevertheless, his initial request indicates that he expected some sort of compensation, even if we're only medical support for the rest of his life. So Murray was quite clear. He was a volunteer. And in contrast, Leech understood the question as asking whether the medical team would provide care in case the experiment went awry. And he wrote, from the context of a national health service, it came as a shock to some of us here that the donor had to ask that question at all. In the United Kingdom, we can offer the donor the benefits of our social security, which includes the health service itself, and all the costs of his own medical care. PS and FB stories expressed disparate expectations regarding the obligations for lifelong care. FB continued to see his transplant for many, many years. FB does not suggest that the transplant program owed him any remuneration, but it does continue to seek and receive follow-up care from his original surgeon, going as far as to follow his surgeon to Pittsburgh when he needs a transplant himself. In contrast, PS only returned to his transplant team once, about one month after donation. But as I said, he felt very positive. They dealt with us as if we were royalty. Today, we still have questions about who should take responsibility and how it would be paid for. And finally, the last issue was about donor expenses. And here, the SEBA attendees were in contentious against paying the donors for the kidney, but they did worry about the financial impact of donation on the donors. As George Triner said, somebody's going in for his own medical care might be willing to handle the expenses, but the volunteer has gone further in a sense we have a higher obligation to him. Now, both PS and FB reported donation-related expenses. PS used the savings he had collected to go to football tryouts, and then he didn't work for a year after. While unemployed, PS had to live with his sister, with a nearby sister, but he didn't view these as financial burdens of the donation and answered no when asked if he had to deal with any costs. In contrast, FB stated that his donation made it difficult for him to find work and health insurance and all described traveling to the transplant center in the back of his uncle's pickup truck. And he too had stayed with family. So it's interesting that neither of them view those as donor expenses. We pushed only so far. This was their story to tell us. And as I said, some of the SEBA attendees thought reimbursement of donor expenses was owed to them. Today we still have broad consensus that we need to remove the financial obstacles, and yet we haven't been able to do that successfully. And finally, the donor's narratives then reveal a gap in the SEBA discussion, namely the options of discussions regarding the socioeconomic consequences of living donation. Although the experience of our two donors were quite different, right? PS returned to his construction job while pursuing his aspiration of professional football. He doesn't blame not making the team because of the donation just on a small size. He does talk about only being able to get on and off health coverage and trying to cover it with his own money in between. FB states that he lost his military position and because he was unable to get gainful employment becomes self-employed. What's fascinating is if you look today, a systematic review reported that 3 to 11 percent of donors experienced some difficulty with health care coverage. This is of special concern in the U.S. where 12 to 18 percent of living donors lack health insurance at the time of donation. Health care professionals must be made aware of these possibilities in order to ensure that donors are able to give an informed consent. And I know we're coming close to the hour, so I'm going to just say that I'm going to skip a little bit of some of the discussion of what our living donors can teach us and just get on to part four and take about another 10 to 15 minutes before I open it up for questions and just talk about the book that Dick and I just published called The Living Organ Donor because here we give an ethics framework for how to think about living donor organ transplantation. And here our background is we actually as we were trying to develop it we were trying to think when do we do something on one body to benefit a third party and so clearly that it doesn't only happen in transplant it also happens in clinical research. And so clinical research actually has a long history of having research ethics regulations after the Nazi atrocities in the 1940s. And so we started to think how our living donors and research participants similar they both may receive psychological benefit but they're both exposed to physical risks. And so if you look at the original Belmont report which is the report for human subjects protections here in the United States written in 1979 they had three principles for research ethics. Respect for persons which is about respecting individuals should be treated as autonomous agents and meaning that they should be able to give a free and informed consent but that persons with diminished autonomy are entitled to protection. The second principle in the Belmont report is about beneficence about making sure that the benefits outweigh the risks. And the third principle is about justice with the fair selection of subjects. We actually adopted these three principles the first three principles about framework for living donors although rather than talking just about autonomy we decided it would be better to talk about relational autonomy because it was about so relational autonomy is two components one is the right to make a decision free from external forces in other words the traditional individual conception of autonomy but rather to look at autonomy within the doctor-patient relationship where relational autonomy means the responsibility of the team to inform and empower the patient to make a decision that best reflects their own needs values and interests or what we call relational autonomy. And this goes very well with the whole concept of shared decision-making. Interestingly when you think about research you also realize that in our federal regulations we talk about three vulnerable groups pregnant women prisoners and children and what we came to realize is that these are not the only groups that are vulnerable and basically Ken Kipnes in 2001 challenged the concept of vulnerable population and instead said all individuals who participated in research have have possibilities of being vulnerable in different ways and so rather than just thinking about vulnerability from a group we should look at it from an individual perspective and he developed this taxonomy of eight different vulnerabilities which we then modified from the research subject into the living donor transplant donors may have cognitive disability which may actually disqualify them or ought to disqualify them from being a living donor. They may have juridic or deferential which is about feeling obligations to do things according to a hierarchy. They may feel social vulnerability because they are in a group that's rights and interests have been socially disvalued. They may feel the situational vulnerability because their loved one is quite ill or medical vulnerability. They may feel allocational that this is one way of getting some prestige or getting some support from a family in which there have been disagreements and of course their infrastructural vulnerabilities due to the political, organizational, economic and social context of the setting which can interfere with managing the living donor process. So what we then did and we stole these ideas from Ken Kipnis two projects that he was working on actually the second project he worked on when he was a visiting scholar here at the McLean Center. We took his concept of vulnerabilities and we took the concept of special relationships and telling special obligations from a book by Robert Gooden where he assigned special responsibilities for protecting those who are vulnerable on those with whom the vulnerable are in special relationship and so he basically said that professionals such as doctors are one such example and in the transplant arena you can look at the living donor advocate or the living donor advocate team standing in special relationship with the potential living donor and so the LDAD in a sense must ensure that the vulnerabilities are adequately addressed so in that relational autonomy the LDAD ensures that the donor is physically psychologically emotionally healthy enough to donate, evaluates the donor's motivation and voluntariness but using the language of Kipnis and Gooden this means that they're responsible for evaluating all these different types of vulnerability and making sure to empower the potential donor to give voluntary and informed consent. So it's sort of this relational autonomy versus vulnerabilities to ensure that the donor is truly free from undue coercion. Now this doesn't mean that the LDAD should protect donors from all risks, it does mean they are responsible for ensuring that the donor is acting voluntarily with adequate information but also that the donor's transplant team can morally justify enabling the donation and I think it's really important for us to acknowledge that this is a bi-directional role and so what does it mean to address a potential donor's vulnerability as I keep going back to it entails this reconception of autonomy and consent to really think in a shared decision-making process so by providing information and examining the vulnerabilities that pertain to a particular living donor the LDAD and other members of the donor transplant team empower the donor to understand the risks and benefits tailored to the particular donor, acknowledge his or her particular vulnerabilities and help determine what these vulnerabilities can be adequately addressed or whether they overwhelm the donor's ability to give a voluntary and informed consent and clearly part of what that will require is also that we understand what the risks are so that and that it's not that we just have this generic notion but to the extent that transplant colleagues are working to try to individualize and determine what degree of risk a particular candidate potential donor may have so that is the transplant team is responsible for promoting a richer conception of autonomy that empowers potential donors to more fully consider whether donation is in his or her best interest as well as protecting individual donors when the decision is too risky is based on inadequate information or understanding or is otherwise not morally justifiable and so that is our five principles it's respect for persons as I said instead of just talking about autonomy using the concept of relational autonomy beneficence making sure that the benefits outweigh the risks for both the donor and for their candidate respectively and individually we talk about justice and a fair selection of living donors and ensuring that it's voluntary we look at their vulnerabilities and not just group vulnerabilities but that every individual may be vulnerable based on one or more of that taxonomy that threaten an individual's ability to make an informed and voluntary decision and within the special doctor patient relationship which is the LDAT the living donor advocate team to the potential donor respect for persons addresses vulnerabilities by enabling and empowering the potential donor to address those vulnerabilities that limit his or her ability to autonomously make decisions that reflect his or her values and beliefs and finally prohibiting donation when the potential donor cannot adequately recognize the extent to which he or she is vulnerable or where he or she cannot act freely and independently protecting those whose decision making is compromised so I'm going to stop here with just with that approach I was going to give a case study but I feel that I'd rather save some time for discussion so I'm just going to conclude with these remarks that living donor kidney transplant involves two patients the living donor and the transplant candidate we need to have separate teams for each patient because each is a patient in their own right and then we have this five-principle framework for thinking about when is it ethical and how can we ethically perform living donor transplantation so with that I just want to acknowledge my funding sources my colleague the book that I just wrote with Dick Thistlesway a special tribute to Bob Beach who was an advisor to our RWJ grant and I would love to stop sharing my screen and take questions well I'm going to give the floor to Michelle in a minute but I think that was absolutely superb Laney and really a good example of ethics at not only the highest level but really thinking about this and having new understandings of how we should approach this and deeper and richer things because on a personal level it is funny my nephew gave a kidney to his brother and it just you know raises all these fascinating issues that you brought up even when you know and just like and those stories are so incredibly powerful so I'm going to let Michelle who's got huge experience and one of your collaborators continue the conversation. Hi Laney that was that was just excellent and as Mindy said superb and you know I really so timely anyone who's looked at recent New York Times articles and a couple of weeks ago on the Sunday Times there was a letter that just went into to I think the ethicist I'm talking about how he didn't like his brother and but his brother needed a kidney and what should he do and actually the ethicist said get over it and donate which I thought was very interesting but anyway we'll that aside I wanted to get your thoughts on how about the issues that decisions are not always binary that people can you know have not just one decision but two at the same time and we often encounter in evaluating patients the the following scenario with where the potential donors says I don't want to donate however I could not live with myself if I didn't and and so how do you protect the the person from themselves and and in a sense you know that's just not an uncommon scenario and so I'm wondering about your your thoughts on that and obviously that you know it speaks to vulnerable you know and but at the same time someone recognizing what they want but they can't do so or maybe they don't want it you can't be sure so Laney I'm interested in your thoughts on that. Yeah no so it's great and the example from the ethicist is a great example because what he's saying is get over it and donate so actually I see that Walter Glandon is on the call and Walter and I wrote a piece many years ago about do do we have moral obligations to donate to family members and we argued that you might have an obligation a moral obligation even though it's the feasible whereas most in the transplant community would say no totally voluntary there's no it's all superrogatory above the idea of duty it's just something you can choose to do and the reason we argued that there was a moral obligation the easiest way to think about it is to think about the negative so if I told you Michelle that I had decided I was not just going to donate my kidney to a stranger even though I saw an ad and I felt bad that this person needed a kidney and we had the same blood type you would think you made lots of people don't donate and we have a hundred thousand people on the wait list so clearly most people don't do it you wouldn't think twice but if I turned to you and said my brother needs a kidney and I've been thinking about and I just don't think I want to donate to my brother your first question would be why why not right just like that ethicist said so I think that one that there might be a moral I think there is a moral obligation sometimes within families and that as I said is it's a pretty controversial point the second is then that the fact that we have that our emotions and our moral obligations conflict shouldn't surprise us and so then the question is we ought to do the right thing and as the ethicist said just get over it and donate thank you then you want to take the floor um yeah I just wanted to do a very brief follow-up on on that Laney um and just about where this thought of moral obligation fits with the concept of improper pressure if um I refuse to donate and one of my relatives believes that I have a moral obligation to do so and tells me I have a moral obligation to do so and says that he or she will think worse of me if I don't do so which presumably is true they if I don't do what they believe is my moral obligation they will think worse of me is that problematic pressure or is that just the way the moral life and family life goes right it's it's sort of a mix of both right I mean the fact is is that uh there are a lot of things that people do that other people judge good or bad right or wrong of course if it's the relative who's telling you you ought to do it the question is well why don't you go and do it as well um family relations aren't just brothers and sisters it could be aunts and uncles and cousins as well so that's the first thing so um yeah I do think that in the end you have the right to refuse and so what is the role of the living donor advocate here if you come in and say I really don't want to donate but my aunt will think much worse I mean I couldn't deal with going to family gatherings the question is the living donor advocate should work with you about your vulnerabilities and whether you're really making a voluntary decision and again about relational autonomy about empowering you to have the courage to say no if you really don't want to do it um does that mean that and you might have good reasons to overcome despite the fact that you have moral obligations maybe you have responsibilities to young kids and you can't afford to take the time off from work or that um or other obligations that might actually override this as I said I view it as a prima facie obligation but I don't think it's an absolute obligation so um so I think the living donor advocate has a long conversation with you so that you finally come to the decision that you think is best uh but is there a moral obligation I still think that at the heart there is but there are reasons why you might be able to justify to yourself and to the world why you're not going to donate thank you and I know it's a controversial and I don't think that I have an obligation to donate to the stranger on the street and so that does raise interesting issues about what's the importance of families um and as you know is leading to my next book which is about sibling obligations so how about this if there's no more questions lanie we're going to give you a little bit of downtime before you do the afternoon session and again we want to thank you for a really absolutely outstanding discussion and in the chat there was a lot of compliments and kudos and um uh deb um Werner's uh collecting some of the um resources that I'll be putting together over the next couple of months so we can follow up on these conversations so thank you so much and we'll give you a little downtime great thank you very much