The History of Solid Organ Transplantation

This chapter provides a brief history of solid organ transplantation. Although the focus is on the living donor, the history of living donor solid organ transplantation is intertwined with the history of deceased donor solid organ transplantation. This is particularly true in the early years of solid organ transplantation when the earliest success for some solid organ transplants began with living donors, e.g. kidney, and began with deceased donors for other solid organ transplants, e.g. liver. The history of each solid organ in which living donors have supplied grafts (kidney, liver, lung, pancreas, intestines, and uterus) is described even though some are rarely if ever performed today, e.g. lung, intestine, pancreas. We also discuss the living domino donor—a candidate-recipient (most commonly the recipient of a deceased donor liver or heart) whose own organ is not discarded but is transplanted into another person.

Prisoners as Living Organ Donors

This chapter considers the special case in which a prisoner seeks to serve as a living donor and what lessons can be learned from human subjects protections for research participants given that both activities are done with the primary goal to benefit third parties. In the federal regulations that codify human subjects protections in the US (45 CFR 46), there are additional protections enumerated for research on prisoners. Current Department of Justice Federal Bureau of Prisons policy allows prisoners to serve as living donors but only for first-degree relatives. This chapter describes what special considerations should be assessed for prisoners to ethically serve as potential living donors using a vulnerabilities approach adapted from the human research subjects protection literature. The donor transplant team (living donor advocacy team) needs both a living donor advocate and a prisoner liaison to ensure that the potential prisoner-donor satisfactorily addresses the vulnerabilities faced by prisoners.

Women and Minorities as Living Organ Donors

In this chapter, two demographic traits of living donors are observed: the over-representation of women and the under-representation of Blacks. This raises the question of whether these differences should be considered a disparity or a preference. A traditional bioethics approach would state that as long as living donors believe that the benefits of participation outweigh the risks and harms (beneficence) and the donors give a voluntary and informed consent (autonomy or, more accurately, respect for persons), then the demographics reflect a mere difference in preferences. Such an analysis, however, ignores the social, economic, and cultural determinants as well as various forms of structural discrimination (such as racism and sexism) that may imply that the distribution is less voluntary than may appear initially. The distribution also raises justice concerns regarding the fair recruitment and selection of living donors and their recipients. A vulnerabilities analysis can help explain the demographics of living donation.

Dealing With Uncertainty

Apolipoprotein L1 (APOL1) may explain much of the excess rate of end-stage renal disease (ESRD) in Blacks compared to Whites. Kidney grafts from deceased donors with two APOL1 risk alleles have worse graft survival, but outcomes appear unaffected by recipient APOL1 status. Unknown is whether unilateral nephrectomy increases the risk of ESRD in living donors with two APOL1 risk alleles and whether their donated kidneys have worse graft survival compared with other living donor grafts. This chapter addresses the decision-making processes of the donor and candidate with their respective separate transplant teams when incomplete data about long-term safety and outcome have implications for both patients. The chapter argues that voluntary APOL1 testing should be offered to prospective Black living donors but the results should only be shared with potential recipients with the living donor’s consent. Living donors are patients who have a right to privacy about their genetic makeup.

Living Donor Liver Transplantation for Acute Liver Failure

Acute liver failure (ALF), or fulminant hepatic failure, affects approximately two to three thousand patients (adults and children) annually in the United States and accounts for approximately eight percent of all liver transplants. Liver transplant for ALF is complicated by the fact that many patients who present with ALF spontaneously recover; however, the severe time constraints that ALF poses means that patients with ALF are usually listed for deceased donor liver transplant, and potential living donors begin donor evaluations even before it is known whether a transplant will be necessary. ALF was initially a contraindication to living donor liver transplantation (LDLT) both because of poor outcomes and because of concerns that the living donors did not have adequate time to give an informed and voluntary consent. Results have improved and ALF in now an accepted indication for LDLT. This chapter examines the ethical issues raised by LDLT in the setting of ALF.

The Living Organ Donor as Patient

This is a book about living solid organ donors as patients in their own right. This book is premised on the supposition that the field of living donor organ transplantation is ethical, even if some specific applications are not, eg, pre-mortem organ procurement of an imminently dying patient. When Joseph Murray performed the first successful living kidney donor transplant in 1954, he thought this would be a temporary stopgap. Today, however, the goal of adequate organ supply without living donors remains elusive. If anything, the supply:demand ratio is worse. In this book, a five-principle living donor ethics framework is developed and used to examine the ethical issues raised by living donor selection demographics, innovative attempts to increase living organ donation, and living donor decision-making and risk thresholds. This ethics framework uses the three principles of the Belmont Report modified to organ transplantation (respect for persons, beneficence, and justice) supplemented by the principles of vulnerability and of special relationships creating special obligations. The approach requires that the transplant community fully embraces living organ donors (and prospective living organ donors) as patients to whom special obligations are owed. Only when living organ donors are regarded as patients in their own right and have a living donor advocate team dedicated to their well-being can the moral boundaries of living solid organ donation be determined and realized. This book provides theoretical arguments and practice guidelines, complemented by case studies, to ensure that living donors are given the full respect and care they deserve.

Minors as Living Organ Donors

In 1957, three years after the first successful kidney transplant between identical twin brothers, the Supreme Judicial Court in Massachusetts authorized kidney transplantation between three sets of identical twin minors and approved another two dozen living donor transplants involving minor donors over the next twenty years. Today, minors rarely serve as living solid organ donors, and donation by minors is prohibited in much of the world. In this chapter arguments are made to restrict children from serving as living donors except as a last resort. It is also argued that if one embraces the concept of the living donor as patient, then one would not make an exception for living donation by a minor to his or her identical twin sibling.

Organ Markets

This chapter examines the arguments in favor of and opposed to a market for kidney grafts from living sources. Although the National Organ Transplant Act (NOTA) of 1984 made it illegal to buy or sell organs in the US, and the World Health Organization recommended a similar ban in 1991 (which was reaffirmed in 2010), there is some support for a kidney market in academic circles. While measures to make living donation financially neutral for living donors are ethical and widely popular, payments that serve as incentives or bribes are neither. The buying and selling of living organ grafts are not an ethical means to mitigate the shortage of organs for transplantation.

Understanding Patients’ and Living Donors’ Kidney Paired Donation Educational Experiences and Recommendations for Improvement

Introduction Educating potential kidney patients and living donors about the risks and benefits of kidney paired donation to ensure they make informed decisions is complex. This study aimed to increase understanding of patients’ and donors’ decision-making about donation, the educational content they received, and their recommendations for educational improvements. Method We conducted a mixed methods study, including semistructured interviews and quantitative surveys, with 43 participants (25 living donors; 18 kidney recipients). Findings Participants reported that the benefits of paired donation motivated them to participate (ie, helping multiple people, receiving a transplant sooner, flexible timing of donation). Although deciding to participate in paired donation was a systematic, logical, and carefully considered process for some. For most, it was a quickly made, often emotion-based decision. Paired donation educational content on different topics varied, with recipients reporting receiving less information than donors about donor protections and processes to ameliorate the challenges faced, such as broken swaps and chains, and delays in matching. Those who faced challenges requested more information about donor protections and support during and after paired donation. Although many acknowledged their transplant coordinators’ helpfulness, participants also recommended being more proactive in learning about kidney paired donation and speaking to former donors and recipients beforehand. Discussion Standardized, health literate educational content addressing the gaps and variability in education received may help increase paired donation informed decision-making.