Sitting Here in Limbo: The Saga of End-Stage Renal Failure and Kidney Transplantation in the United States

Abstract

This paper aims to evaluate the role that personal appeals for organ donations have played throughout the history of transplantation, with particular attention to the diverse relationships such appeals have had with public policy regarding organ transplantation — at times seeming to animate policy developments, while at other times assuming an antagonistic role vis-a-vis the medical and legal establishments — and the further ethical issues implicated by the advent of social media as a tool to facilitate these exchanges. In Part I, I will recount the history of modern treatment for kidney disease, and how its development set up a paradigm that deeply entwined the federal government and the medical establishment. I will discuss the complex history of the earliest widely-used treatment for kidney failure — dialysis — paying special attention to the issues of scarcity and allocation that have complicated this treatment since the opening of the first long-term dialysis clinics in the early 1960s. I will discuss how the success of kidney transplantation created new problems of supply and demand that resemble those associated with dialysis in the past. I will recount the history of legislation related to kidney disease and organ donation, including a discussion of the role that personal emotional appeals have played in shaping public policy related to the treatment of kidney disease, even before transplantation became the preferred method of treatment. In Part II, I will provide statistics to illustrate the gravity of the issues that characterize our current system of regulating organ transplantation. Then, I will describe the values that motivate our organ donation and allocation system, and the conflicts they can engender. In Part III, I aim to further elucidate the profound moral issues implicated in organ transplantation by discussing the experience of having end stage renal disease, and relating the reality of this experience to an analysis of the rhetoric surrounding kidney transplantation in the United States. Part IV will address various issues concerning directed donations from living organ donors. First, I will discuss the notable absence of regulation with regard to organ donations from living donors, explaining why this regulatory gap exists, and how it has led to further controversy and dysfunction within the organ transplantation system. Second, I will discuss concerns unique to living kidney donation, and how the medical and legal establishments have responded to these concerns in crafting the transplant process as it operates today. Next, I will analyze trends in living donation, specifically the increasing popularity of non-related directed donations. I will discuss the ethical issues implicated in this trend, including the permissibility of directed donation, how certain types of directed donation conflict with the values that constitute the backbone of our current organ transplantation system, and the question of risk to both donor and recipient. I will then specifically address the role of social media and the Internet in facilitating this trend, and the ways in which new social media platforms to facilitate living donation may serve to exacerbate inequalities in organ allocation. In Part V, I will propose a way to harness the power of social media in order to facilitate increased donation, and make several suggestions for improving our policy regarding living organ donation.