Just Waiting : Ethical Challenges in Priority Setting Posed by Organ Scarcity in Kidney Transplantation

Sammanfattning: Over the last few decades kidney transplantation has transformed from an experimental treatment to the treatment of choice for end-stage renal disease. Unfortunately, however, the established organ donation models in many countries, relying chiefly on altruism, fail to motivate a sufficient number of donors. As a consequence, many lives which could be saved are lost, and others which can be improved are left to deteriorate.Dealing with the challenge of scarcity in kidney transplantation requires a dual approach. In the immediate term, we must ensure the fair distribution of kidney transplantation as a scarce medical resource. In the long term, we must find a policy level solution to mitigate the root issue of scarcity. The policy approach promoted in this thesis is the introduction of incentive based organ donation. Fair resource allocation, and incentive based donation are two themes which raise interesting normative questions, and ethical challenges. Each theme corresponds to two paperswhich form the basis for the thesis.Papers I &II, evaluate fairness in the priority setting processes underpinning access to kidney transplantation; this is done both within Sweden's four transplant centers and the Toronto General Hospital in Canada. The criteria, values, and procedures used in clinical decision-making are analyzed to identify barriers to fairness and how such barriers can be removed.Papers III and IV, propose incentive based living kidney donation and incentive based deceased donation, respectively, as policy solutions to the organ scarcity. The most frequently raised ethical objections against incentive based models are discussed in a bid to demonstrate the moral permissibility of incentive based organ donation.The discussion about fairness, and incentive based models, highlights that the ethical challenges raised by kidney scarcity are inherently difficult. While we may not find infallible solutions we certainly can work towards better solutions. We can create clinical priority setting processes, that while not perfect, move us closer towards increased fairness by removing clear obstacles to just distribution. We can create organ donation policies while not free of ethical challenges; do not shy away from all risk, or from asking the difficult questions.