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Objectives. In the UK, three people die every day awaiting an organ transplant. To address this, Scotland and England plan to follow Wales and introduce opt-out donor consent. However, emotional barriers, myths and misconceptions may deter potential registrants. Our objectives were to estimate the number of people who plan to opt-out of the donor register and to test if emotional barriers (e.g., medical mistrust) differentiated participants within this group. Finally, in an experimental manipulation, we tested whether intention to donate decreased by making emotional barriers more salient and increased following a widely used myth-busting intervention. Design. Mixed between-within design. Methods. UK residents (n = 1202) were asked whether they would choose; opt-in, deemed consent, or opt-out/not sure if legislation changes to opt-out. Participants also completed measures of donor intentions at baseline, following a 12-item emotional barriers questionnaire and again, following a 9-item myth-busting intervention. Results. Findings indicate that 66.1% of participants selected to opt-in to the donor register, 24.3% selected deemed consent and 9.4% selected opt-out/not sure. Emotional barriers, notably, fears surrounding bodily integrity were significantly elevated in participants who selected opt-out/not sure. Increasing the salience of emotional barriers reduced donor intentions in the opt-out/not sure group. However, dispelling organ donation myths did not increase intention within this group. Conclusions. If opt-out legislation is introduced in Scotland and England, approximately 10% of participants plan to opt-out or are not sure. Dispelling organ donation myths with facts may not be the best method of overcoming emotional barriers and increasing donor intentions for those planning to opt-out.

OBJECTIVES: In the United Kingdom, three people die every day awaiting an organ transplant. To address this, Scotland and England plan to follow Wales and introduce opt‐out donor consent. However, emotional barriers, myths, and misconceptions may deter potential registrants. Our objectives were to estimate the number of people who plan to opt‐out of the donor register and to test whether emotional barriers (e.g., medical mistrust) differentiated participants within this group. Finally, in an experimental manipulation, we tested whether intention to donate decreased by making emotional barriers more salient and increased following a widely used myth‐busting intervention. DESIGN: Mixed between–within design. METHODS: UK residents (n = 1,202) were asked whether they would choose opt‐in, deemed consent, or opt‐out/not sure if legislation changes to opt‐out. Participants also completed measures of donor intentions at baseline, following a 12‐item emotional barriers questionnaire and again, following a 9‐item myth‐busting intervention. RESULTS: Findings indicate that 66.1% of participants selected to opt‐in to the donor register, 24.3% selected deemed consent, and 9.4% selected opt‐out/not sure. Emotional barriers, notably fears surrounding bodily integrity, were significantly elevated in participants who selected opt‐out/not sure. Increasing the salience of emotional barriers reduced donor intentions in the opt‐out/not sure group. However, dispelling organ donation myths did not increase intention within this group. CONCLUSIONS: If opt‐out legislation is introduced in Scotland and England, approximately 10% of participants plan to opt‐out or are not sure. Dispelling organ donation myths with facts may not be the best method of overcoming emotional barriers and increasing donor intentions for those planning to opt‐out. STATEMENT OF CONTRIBUTION: What is already known about this subject? In the United Kingdom, three people die every day waiting for an organ transplant. Although 90% of the UK population support organ ...

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. STATEMENT OF CONTRIBUTION: What is already known about this subject? Although around 90% of individuals in the United Kingdom support organ donation, just 40% are actively registered as donors. As part of measures to improve rates of organ ...

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.

Acknowledgements The authors would like to acknowledge the assistance of Amy Hickman, and Eluned Hughes from Breast Cancer Now, for guidance on practical intervention perspectives, and Jill Hampton in manuscript preparation. Thanks also to all the members of our public advisory group. The Health Services Research Unit, University of Aberdeen, receives core funding from Scottish Government Chief Scientist Office. Funding This work was supported by The Scottish Government, grant number BC/Screening/17/01. The funders provided independent referee reports, which guided some of the study parameters (as described in the text). The funders have read this manuscript. In-kind support was given by Breast Cancer Now for facilitating this study. ; Peer reviewed ; Publisher PDF

Acknowledgements Our thanks to Elizabeth Banks who advised and assisted with many aspects of the study and also to the many women who commented on the development and design of this study including those on our Public Advisory Team (Pamela Deponio, Maggie Taylor and Mary Wotherspoon). Funding This work was supported by The Scottish Government, grant number BC/Screening/17/01. The funders provided independent referee reports which guided the final study design. The funders have read this manuscript. In-kind support was given by Breast Cancer Now for facilitating this study. ; Peer reviewed ; Publisher PDF