Colin M E Halverson1,2, Megan Crowley-Matoka3,4, Lainie Friedman Ross2,5,6. 1. 1 Department of Anthropology, University of Chicago, Chicago, IL, USA. 2. 2 MacLean Center for Clinical Medical Ethics, University of Chicago, Chicago, IL, USA. 3. 3 Department of Medical Education-Medical Humanities and Bioethics, Northwestern University Feinberg School of Medicine, Chicago, IL, USA. 4. 4 Department of Anthropology, Northwestern University, Chicago, IL, USA. 5. 5 Department of Pediatrics, University of Chicago, Chicago, IL, USA. 6. 6 Department of Surgery, University of Chicago, Chicago, IL, USA.
Abstract
BACKGROUND: Traditionally, living kidney donors were first-degree relatives due to both greater biological compatibility and concerns about extrafamilial motivation. Because familial relationships often entail distinctive experiences of moral obligation, health-care providers must be attentive to potential undue influences on intrafamilial donor decision-making processes to ensure that decisions are voluntary. METHODS: Qualitative interviews were conducted with 20 individuals who donated kidneys to first-degree relatives and subsequently developed end-stage renal disease themselves. FINDINGS: We analyze the different influences kinship obligations had on participants' decision-making processes. Although participants described their decision to donate as obvious, an appropriate kin response, and free from external pressure, they indirectly expressed some ambivalence-both by their description of the rapidity of the process and in their concern about exposing an intimate to the risks of living donation. DISCUSSION: Our data uncovered an asymmetry. Although our participants claimed that they would donate again, none received a living donor kidney. Our data also highlight the moral significance of the interdependence of donor and recipient in intrafamilial kidney donation and its impact on the range of voluntary choices as perceived by the donor. Their decision-making must be understood as embedded within a network of intimate social relations.
BACKGROUND: Traditionally, living kidney donors were first-degree relatives due to both greater biological compatibility and concerns about extrafamilial motivation. Because familial relationships often entail distinctive experiences of moral obligation, health-care providers must be attentive to potential undue influences on intrafamilial donor decision-making processes to ensure that decisions are voluntary. METHODS: Qualitative interviews were conducted with 20 individuals who donated kidneys to first-degree relatives and subsequently developed end-stage renal disease themselves. FINDINGS: We analyze the different influences kinship obligations had on participants' decision-making processes. Although participants described their decision to donate as obvious, an appropriate kin response, and free from external pressure, they indirectly expressed some ambivalence-both by their description of the rapidity of the process and in their concern about exposing an intimate to the risks of living donation. DISCUSSION: Our data uncovered an asymmetry. Although our participants claimed that they would donate again, none received a living donor kidney. Our data also highlight the moral significance of the interdependence of donor and recipient in intrafamilial kidney donation and its impact on the range of voluntary choices as perceived by the donor. Their decision-making must be understood as embedded within a network of intimate social relations.
Entities:
Keywords:
decision-making; ethics; intrafamilial relationships; kidney transplantation; living donors