title: 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, policy-makers 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.
authors.affiliation: Institute for Healthcare Studies, Comprehensive Transplant Center, Northwestern University Transplant Outcomes Research Collaborative, Feinberg School of Medicine, Northwestern University, Chicago, IL, USA. e-gordon@northwestern.edu
authors.forename: E J
authors.initials: EJ
authors.lastname: Gordon
mesh_terms: D000533:Altruism; D003657:Decision Making; D036262:Empirical Research; D006801:Humans; D007258:Informed Consent; D019520:Living Donors; D009927:Tissue and Organ Procurement / Q000941:ethics