title: Opting out: confidentiality and availability of an 'alibi' for potential living kidney donors in the USA.
abstract: Ethicists and guidelines have suggested that potential living kidney donors who withdraw from evaluation be offered an 'alibi.' We sought to determine what potential living kidney donors are told about their ability to opt out, alibi availability and postwithdrawal confidentiality. We reviewed 148 consent forms for living kidney donor evaluation from US transplant centres that performed >5 living kidney transplants in 2010-2011 (response rate 87%). We found that while 98% of centres used evaluation consent forms that indicated that the donor could withdraw, only 21% of these documents offered an alibi. Another 23% of centres' consent forms indicated that the transplant team would be willing to inform the intended recipient that an individual was not a potential donor. Relatively few consent documents explicitly addressed the confidentiality of the donor's health information (31%), candidacy status (18%), decision (24%) or reasons (23%) following withdrawal. To preserve potential donors' autonomy and relationships, we advocate that all transplant centres offer general alibis in their evaluation consent forms. We conclude by offering recommendations for evaluation consent discussions of opting out, alibis and postwithdrawal confidentiality.
authors.affiliation: Section of Organ Transplantation & Immunology, Department of Surgery, Yale University School of Medicine, New Haven, Connecticut, USA.
authors.forename: Carrie
authors.initials: C
authors.lastname: Thiessen
authors.affiliation: Section of Organ Transplantation & Immunology, Department of Surgery, Yale University School of Medicine, New Haven, Connecticut, USA.
authors.forename: Yunsoo A
authors.initials: YA
authors.lastname: Kim
authors.affiliation: Section of Nephrology, Department of Internal Medicine, Yale University School of Medicine, New Haven, Connecticut, USA.
authors.forename: Richard
authors.initials: R
authors.lastname: Formica
authors.affiliation: Section of Nephrology, Department of Internal Medicine, Yale University School of Medicine, New Haven, Connecticut, USA.
authors.forename: Margaret
authors.initials: M
authors.lastname: Bia
authors.affiliation: Section of Organ Transplantation & Immunology, Department of Surgery, Yale University School of Medicine, New Haven, Connecticut, USA.
authors.forename: Sanjay
authors.initials: S
authors.lastname: Kulkarni
mesh_terms: D003219:Confidentiality / Q000941:ethics*; D032962:Consent Forms / Q000706:statistics & numerical data*; D006801:Humans; D016030:Kidney Transplantation; D019520:Living Donors / Q000523:psychology*; D009927:Tissue and Organ Procurement / Q000941:ethics* / Q000379:methods*
keywords: Donation/Procurement of Organs/Tissues; Ethics; Informed Consent; Kidneys; Transplantation