title: A Call for Research on Individuals Who Opt Out of Living Kidney Donation: Challenges and Opportunities.
abstract: In light of the transplant community's efforts to increase living donation, preserving donor autonomy is essential. Understanding how often and the reasons why potential living kidney donors opt out of the donor evaluation process for nonmedical reasons is important for assessing donor voluntariness. The experiences of individuals who opt out of donation may reveal avenues for enhancing donor protections and identify modifiable deterrents to donation. A limited number of centers have reported rates of opting out between 0.2% and 22%; the reasons for declining to donate are not well studied. This article calls for further research on potential living donors who opt out of donation. We describe challenges to studying this population and offer a roadmap for an ethical approach to conducting research on individuals who withdraw from living kidney donor evaluation.
authors: 1 Section of Organ Transplantation & Immunology, Department of Surgery, Yale School of Medicine New Haven, CT.2 Center for Clinical Epidemiology and Biostatistics, University of Pennsylvania, Philadelphia, PA.3 Comprehensive Transplant Center, Center for Healthcare Studies, and Center for Bioethics and Medical Humanities, Northwestern University Feinberg School of Medicine, Chicago, IL.
authors: Carrie
authors: C
authors: Thiessen
authors: Sanjay
authors: S
authors: Kulkarni
authors: Peter P
authors: PP
authors: Reese
authors: Elisa J
authors: EJ
authors: Gordon
mesh_terms: D002755:Choice Behavior; D003219:Confidentiality; D006801:Humans; D007258:Informed Consent / Q000941:ethics; D016030:Kidney Transplantation / Q000941:ethics / Q000379:methods*; D019520:Living Donors / Q000941:ethics; D009392:Nephrectomy / Q000523:psychology*; D010353:Patient Education as Topic / Q000379:methods; D020858:Tissue and Organ Harvesting; D009927:Tissue and Organ Procurement / Q000379:methods*; D006113:United Kingdom; D014838:Volunteers