'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

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. 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.