title: Understanding selective refusal of eye donation. Identity, beauty, and interpersonal relationships.
abstract: Corneal transplantation is the most common form of organ transplantation performed globally. However, of all organs, eyes have the highest rate of refusal of donation. This study explored the reasons why individuals decide whether or not to donate corneas. Twenty-one individuals were interviewed who had made a donation decision (13 refused corneal donation and eight consented). Analysis was performed using Grounded Theory. Refusal of corneal donation was related to concerns about disfigurement and the role of eyes in memory and communication. The request for donation therefore raised concerns about a potential adverse change in the ongoing relationship with the deceased, even in death. For those who refused donation, these concerns overshadowed awareness of need or benefit of transplantation. Adjusting the donation message to be more congruent with the real, lived experience of corneal donation may to some extent "prepare" individuals when the donation question is raised.
authors.affiliation: Centre for Values, Ethics and the Law in Medicine, University of Sydney, Sydney, NSW, Australia, mitchell@eye.usyd.edu.au.
authors.forename: Mitchell
authors.initials: M
authors.lastname: Lawlor
authors.forename: Ian
authors.initials: I
authors.lastname: Kerridge
mesh_terms: D000328:Adult; D000368:Aged; D001315:Australia; D001504:Beauty; D003315:Cornea; D016039:Corneal Transplantation / Q000941:ethics / Q000523:psychology; D005123:Eye; D005190:Family / Q000523:psychology; D005260:Female; D006801:Humans; D007258:Informed Consent / Q000941:ethics / Q000523:psychology; D007398:Interpersonal Relations; D007407:Interviews as Topic; D008297:Male; D008875:Middle Aged; D036301:Qualitative Research; D020858:Tissue and Organ Harvesting / Q000941:ethics / Q000523:psychology; D009927:Tissue and Organ Procurement; D014481:United States