What Are the Harms of Refusing to Allow Living Kidney Donation? An Expanded View of Risks and Benefits

Abstract

Recent Organ Procurement and Transplantation Network policies relating to living kidney donation (LKD) warrant renewed attention to the ethics of transplantation from living donors. These policies focus on risks related to potential donor evaluation, informed consent and follow‐up. The ethical basis of living donation is a favorable risk/benefit ratio for the donor, but regulations and research have given less attention to the benefits of donation. Relatedly, the transplant field has also failed to consider potential harms from denying patients the opportunity to donate. These harms may be substantial in the setting of directed kidney donation to a spouse/partner, sibling or child. We argue that complete assessment of donor risks and benefits demands consideration of not only the risks and benefits of donation, but also those of refusing a donor. In contrast to the ever‐expanding literature on risks of donation, there are no data describing outcomes for individuals who were turned down as kidney donors. We consider factors contributing to this omission in the transplant literature, argue that current regulations may perpetuate a narrow understanding of relevant risks and benefits in LKD, and identify areas for improvement in research and clinical practice.

Identifying Outcomes that Are Important to Living Kidney Donors

“…Current guidelines for informed consent and follow-up care do not comprehensively address psychosocial outcomes and other donor-reported outcomes that are relevant to decision making (14)(15)(16)(17). This study aims to identify the effects of kidney donation that are deemed important by living kidney donors, and to understand the beliefs underpinning the outcomes they value.…”

When Opportunity Knocks Twice: Dual Living Kidney Donation, Autonomy and the Public Interest

“…41 Indeed, recently a call has been made to the transplant community to study the harms experienced by potential LKDs who, although willing, are not able to donate. 42 In this work, Allen et al argue that the risks of donation and those of non-donation should be considered in tandem and, by extrapolation, the risk of nondonation may sometimes be 'greater' than that of donation. In Tom's case, there might be a case for considering not only the benefits and harms of donation, but also of denying him the opportunity to donate.…”

Living kidney donation

“…73 In addition to evaluating the risks, consideration of living kidney donation must also involve an evaluation of the benefits to potential donors, which can be substantial, and the harms of non-donation. 76 …”