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.
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 language | English |
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Pages (from-to) | 257-274 |
Number of pages | 17 |
Journal | British Journal of Health Psychology |
Volume | 25 |
Issue number | 2 |
Early online date | 30 Jan 2020 |
DOIs | |
Publication status | Published - May 2020 |
Data Availability Statement
The anonymized data that supports the findings of this study are available from the corresponding author upon reasonable request.Keywords
- organ donation
- opt-out consent
- medical mistrust
- bodily integrity
- government control
- thematic analysis