'If I donate my organs it's a gift, if you take them it's theft': a qualitative study of planned donor decisions under opt-out legislation.

Miller J ，Currie S ，O'Carroll RE 《BMC PUBLIC HEALTH》

'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.

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 transplantation, Scotland and England are moving to an opt-out organ donation consent system in 2020. Existing research has shown that feelings and emotions are important factors that influence donor relevant decisions under the current opt-in system, but little research has explored potential deterrents under the new plans for opt-out consent. Minimizing the number of people opting out of the donor register is key to ensure sustained rates of transplantation. What does this study add? This study explored why people plan to opt-out of the new system in Scotland and England. Medical mistrust and bodily integrity concerns remain as salient barriers under opt-out laws. Fears of unwarranted government control and a perceived threat to one's freedom of choice emerged as a novel barrier.

Miller J ，Currie S ，McGregor LM ，O'Carroll RE ... -  《-》

'What if I'm not dead?' - Myth-busting and organ donation.

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. Mixed between-within design. 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. 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. 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 donation, only 38% are registered donors. To address this, Scotland and England have recently proposed to introduce an opt-out system of donor consent. To date, limited research has investigated public attitudes and intentions regarding opt-out consent laws in Scotland and England. Emotional barriers (e.g., medical mistrust) are key factors that may deter potential registrants. However, no research has examined these barriers in relation to proposed opt-out consent laws. Myth-busting is widely used around the world as part of campaigns promoting organ donation. The NHS currently use a myth-busting feature on their webpage to dispel harmful myths about organ donation; however, there is limited evidence of the impact this has on intentions to become an organ donor. What does this study add? Approximately 10% of UK participants plan to opt-out or are unsure of their decision, if the law changes to opt-out. Emotional barriers, notably, bodily integrity fears, are significantly elevated in people who plan to opt-out. Increasing the salience of emotional barriers reduced donor intentions for people who plan to opt-out. A myth-busting intervention had no effect on donor intentions for people who plan to opt-out of the donor register.

Miller J ，Currie S ，O'Carroll RE 《-》

Presumed Dissent? Opt-out Organ Donation and the Exclusion of Organs and Tissues.

It is often claimed that a legitimate approach to organ donation is an opt-out system, also known as 'presumed consent', 'deemed consent', or 'deemed authorisation', whereby individuals are presumed or deemed willing to donate at least some of their organs and tissues after death unless they have explicitly refused permission. While sharing a default in favour of donation, such systems differ in several key respects, such as the role and importance assigned to the family members of prospective donors and their preferences, and exclusions and safeguards which often specify the demographic groups, purposes, or organs and tissues that will remain outside the scope of the opt-out system. Using the recent shift to opt-out in England, Scotland, and Northern Ireland as case studies, and by reference to the key goals motivating this shift across the UK, this article asks whether and, if so, why, and how, opt-out systems for post-mortem organ donation should restrict the types of organs and tissues for which consent is deemed. In other words, ought opt-out systems for PMOD presume dissent regarding the donation of certain organs and tissues?

Williams NJ ，O'Donovan L ，Wilkinson S 《-》

Attitudes to Organ Donor Registration in England Under Opt-Out Legislation.

Clark NL ，Copping L ，Swainston K ，McGeechan GJ ... -  《-》