L/I‐1 Beyond coercion: a new paradigm for understanding donor motivation and informed consent in living donor transplantation (LDT)

Despite major medical and technological advances in living donor transplantation (LDT) in recent decades, comparatively little advancement has been made in the area of donor informed consent. Concerns about donor coercion continue to vex the transplant and bioethics communities, which struggle to make sense of donors’ motivations and decision‐making. Failure to comply with objective criteria for “informed consent” is assumed to negate the possibility of autonomy with regard to the decision to donate. And yet, research suggests that actual donor decision‐making does not correspond to the gold standard model of informed consent. Potential donors report making the decision to donate immediately when the subject of donation is first mentioned and well before the start of the formal “informed consent” process. This variance between the ideal of informed consent and actual donor decision‐making poses a seemingly intractable problem for the transplant community: if donors are not making the decision to donate in accordance with the informed consent requirements, on what basis are their decisions being made? Historically, this variance has been addressed by introducing into the consent process various procedures to slow down and authenticate donor decision‐making, including creating a staged consent process to “manage” coercion, the introduction of a forced “cooling off” period, offers of a “medical excuse” as a way out of donation, psychological assessments, and the use of donor advocates. Recently, Spital suggested living related donors may be providing valid consent that may not be “informed.” These and similar proposals do not adequately resolve the problem. We suggest the way out of the problem is through reconceptualizing donor decision‐making and the role donors’ motivations play therein. Specifically, an explanation for the discrepancy between the gold standard ideal of informed consent and actual donor decision‐making is that donors have most information relevant to make the decision to donate immediately available when the issue of donation is first raised. Using work by Fellner and Marshall, Freedman, and others, we suggest this information can constitute “recognizable reasons” for donation, including awareness of the consequences of the decision to donate or not; ascription of responsibility related to these consequences to themselves; awareness of moral norms; and information about the presumed risks and benefits of donation. Unlike the current model, the new paradigm allows for objective assessment of individual donors' motivations and decision‐making in ways that give latitude to individual donors' own value system without falling into relativism or subjectivism. It is not necessary to share donors' personal value system in order to deem their reasons acceptable; one only needs to “recognize” they comprise an acceptable justification for that individual donor. Thus the new paradigm's conceptualization of donor decision‐making allows for recognition that donors can be legitimately and positively influenced by considerations that the gold standard process of “informed consent” cannot accommodate.