Informed Consent for Living Donation: A Review of Key Empirical Studies, Ethical Challenges and Future Research

Abstract

Given the organ scarcity, live organ donation is increasingly considered a viable alternative for kidney and liver transplantation. Yet living donation challenges the ethical principle of nonmaleficence by subjecting healthy individuals to medical, psychosocial and unknown risks. Therefore, transplant providers, policymakers and donors are committed to ensuring that prospective donors provide adequate informed consent to undergo the procedure. Informed consent for living donation is ethically required as a means of demonstrating respect for donor's autonomy and protecting their safety. However, all elements of informed consent are fraught with difficulties due to the unique nature of the donation process and outcome. This paper reviews empirical research on informed consent for live kidney donors (LKD) and live liver donors (LLD) for both adult and pediatric recipients. As this review shows, studies that empirically assessed the quality of informed consent elements reveal considerable variability and deficiencies across the informed consent process, suggesting the need for improvement. This review highlights challenges to each element of consent for both LKDs and LLDs, and situates trends within broader policy contexts, ethical debates and avenues for future innovative research.

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

“…LKD is therefore considered acceptable when the risks of nephrectomy are low, and when the donor deems these risks worthwhile given expected benefits of donation (3,4). However, recent Organ Procurement and Transplantation Network (OPTN) policies establishing requirements for informed consent, medical evaluation and follow-up of living kidney donors focus on the risks of nephrectomy, while ignoring other important aspects of the decision to donate a kidney (5,6). These policies reflect the limited attention to the benefits of kidney donation in transplant research and the absence of any data describing outcomes for individuals who were turned down as kidney donors.…”

Psychosocial support for children and families requiring renal replacement therapy

“…It is essential that each family is assessed by a social worker so that the burden of care is understood and resources such as grants can be maximised [46]. Transplantation is the preferred modality of treatment for children needing RRT, but again the financial impact on the family of living related donor transplantation, often from mothers, needs to be understood and carefully assessed as well as the lasting impact on family dynamics [47,48].…”

Standardized information for living liver donors

“…Providing essential information to prospective living liver donors is necessary to optimize their understanding and ensure that they are fully prepared to undergo the donation process. 2 However, systematic reviews indicate that prospective living liver donors are not sufficiently informed and do not adequately comprehend the information that they receive about donation procedures and associated risks. 3,4 Thus, there is a great need to provide standardized information to prospective living liver donors to supplement the current informed consent process.…”