‘It’s like being conscripted, one volunteer is better than 10 pressed men’: A qualitative study into the views of people who plan to opt‐out of organ donation

Jordan Miller* (Corresponding Author), Sinéad Currie, Lesley M. McGregor, Ronan E. O’Carroll

*Corresponding author for this work

Research output: Contribution to journalArticlepeer-review

7 Citations (Scopus)

Abstract

Objectives
To overcome the shortage of organ donors, Scotland and England are introducing an opt-out organ donor registration system in 2020. This means individuals will be automatically considered to consent for donation unless they actively opt-out of the register. Research has found that emotional barriers play a key role in donor decisions under opt-in legislation, yet little is known about factors that influence donor decisions under opt-out consent. Our objectives were to investigate attitudes towards organ donation and opt-out consent from individuals who plan to opt-out, and to explore the reasons why they plan to opt-out.

Design
Qualitative interview study.

Methods
Semi-structured interviews were conducted with 15 individuals from Scotland (n = 14) and England (n = 1) who self-reported the intention to opt-out of the register following the legislative change to opt-out. The interviews were transcribed verbatim and analysed using thematic analysis.

Results
Three main themes were identified: (1) consent versus coercion, which describes the perception of freedom of choice under an opt-in system and fears of ‘government interference’ and threatened autonomy under opt-out, (2) self-protection, encompassing fears of medical mistrust, bodily integrity concerns, and apprehension regarding the recipient selection process, and lastly, (3) ‘riddled with pitfalls’, which includes the notion that opt-out consent may increase susceptibility of stigma and reproach when registering an opt-out decision.

Conclusions
This study reinforces existing opt-in literature surrounding medical mistrust and bodily integrity concerns. A threat to one’s autonomous choice and heightened reactance arising from perceptions of unwarranted government control have emerged as novel barriers.
Original languageEnglish
Pages (from-to)257-274
Number of pages17
JournalBritish Journal of Health Psychology
Volume25
Issue number2
Early online date30 Jan 2020
DOIs
Publication statusPublished - May 2020

Keywords

  • organ donation
  • opt-out consent
  • medical mistrust
  • bodily integrity
  • government control
  • thematic analysis

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