Australian Perspectives on Opt-In and Opt-Out Consent Systems for Deceased Organ Donation

Hyde, Melissa K.; Masser, Barbara M; Edwards, Abigail R. A.; Ferguson, Eamonn

Abstract

Introduction: As many countries change to opt-out systems to address organ shortages, calls for similar reform in Australia persist. Community perspectives on consent systems for donation remain under-researched, therefore Australian perspectives on consent systems and their effectiveness in increasing donation rates were explored. Design: In this descriptive cross-sectional study, participants completed a survey presenting opt-in, soft opt-out, and hard opt-out systems, with corresponding descriptions. Participants chose the system they perceived as most effective and described their reasoning. Results: Participants (N = 509) designated soft opt-out as the most effective system (52.3%; hard opt-out 33.7%; opt-in 13.7%). Those who identified with an ethnic/cultural group or were not registered had greater odds of choosing opt-out. Six themes identified in thematic analysis reflected their reasoning: (1) who decides (individual, shared decision with family); (2) right to choose; (3) acceptability (ethics, fairness); and utility in overcoming barriers for (4) individuals (apathy, awareness, ease of donating, fear/avoidance of death); (5) family (easier family experience, family veto); (6) society (normalizing donation, donation as default, expanding donor pool). Choice and overcoming individual barriers were more frequently endorsed themes for opt-in and opt-out, respectively. Discussion: Results suggested the following insights regarding system effectiveness: uphold/prioritize individual's recorded donation decision above family wishes; involve family in decision making if no donation preference is recorded; retain a register enabling opt-in and opt-out for unequivocal decisions and promoting individual control; and maximize ease of registering. Future research should establish whether systems considered effective are also acceptable to the community to address organ shortages.

Citation

Hyde, M. K., Masser, B. M., Edwards, A. R. A., & Ferguson, E. (2021). Australian Perspectives on Opt-In and Opt-Out Consent Systems for Deceased Organ Donation. Progress in Transplantation, 31(4), 357-367. https://doi.org/10.1177/15269248211046023

• Journal Article Type: Article
• Acceptance Date: Jul 6, 2021
• Online Publication Date: Nov 22, 2021
• Publication Date: Dec 1, 2021
• Deposit Date: Sep 20, 2021
• Publicly Available Date: Nov 22, 2021
• Journal: Progress in Transplantation
• Print ISSN: 1526-9248
• Electronic ISSN: 2164-6708
• Peer Reviewed: Peer Reviewed
• Volume: 31
• Issue: 4
• Pages: 357-367
• DOI: https://doi.org/10.1177/15269248211046023
• Keywords: Transplantation
• Public URL: https://nottingham-repository.worktribe.com/output/6292685
• Publisher URL: https://journals.sagepub.com/doi/abs/10.1177/15269248211046023?journalCode=pitb
• Additional Information: Accepted for publication in the journal Progress in Transplantation.