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

Abstract

Introduction: In England, everyone is considered an organ donor unless they have registered for opt-out donation. Research Question: This study evaluated positive statements and negative affective attitudes against anticipated organ donor status and whether the order in the attitudes and statements presented impacted organ donor intention under an opt-out system. Design: A quasi-experimental mixed between-within design was employed with participants assigned to 1 of 2 conditions. Participants in the first condition received negative affective attitude statements followed by positive statements. This was reversed in the second condition to combat ordering effects. Participants ( N = 679) were asked about their donor status under an opt-out system. There were three groups: opt-in (actively), opt-out/not sure, and deemed consent (no objection). Organ donor intentions were measured at three intervals: baseline, post-positive statements, and post-negative attitudes. Results: Approximately 10% of participants would opt-out or were unsure of their intentions to be an organ donor under an opt-out system. Significant effects were found in both positive statements and negative affective attitudes. All groups expressed greater medical mistrust and were most influenced by cognitive attitudes. Conclusions: Under the opt-out system in England, it is anticipated that the majority would actively opt-in or have no objection to being automatically registered as an organ donor. Public health campaigns would benefit from promoting the most influential positive statements and refuting the most detrimental negative attitudes to increase intentions of those who plan to opt-out or are unsure.

“I am in favour of organ donation, but I feel you should opt-in” - qualitative analysis of the #options 2020 survey free-text responses from NHS staff toward opt-out organ donation legislation in England

“…Whilst the ndings from the overall #options survey demonstrated awareness is higher in NHS staff, there was a signi cant narrative in the free-text response regarding a lack of awareness and a concern the general public must also lack the same awareness of the system change. Some responses also re ected medical mistrust concerns of the general public 13,14,16 as well as expressing a fear of losing trust with the public 9,16 , as found within previous work. Additional research articles raising awareness of the opt-out system in England suggest that despite publicising the change with carefully crafted positive messaging, negative views and attitudes are likely to in uence interpretation leading to an increase in misinformation 28 .…”

“…These concerns can be linked to emotional and attitudinal barriers towards organ donation, understanding and acceptance 9 . Four frequently referenced barriers include (1) jinx factor: superstitious beliefs; (2) ick factor: feelings of disgust related to donating; (3) bodily integrity: body must remain intact; (4) medical mistrust: believing doctors will not save the life of someone on the ODR [13][14][15] . The latter barrier is mostly reported by the general public in countries with opt-out systems 13,14,16 and is also a barrier healthcare staff believe will occur in the UK under an opt-out system 9,16 .…”

“I am in favour of organ donation, but I feel you should opt-in”—qualitative analysis of the #options 2020 survey free-text responses from NHS staff toward opt-out organ donation legislation in England

“…Whilst the findings from the overall #options survey demonstrated awareness is higher in NHS staff, there was a significant narrative in the free-text response regarding a lack of awareness and a concern the general public must also lack the same awareness the system change. Some responses also reflected medical mistrust concerns of the general public [13,14,16] as well as expressing a fear of losing trust with the public [9,11,16], as found within previous work. Additional research articles raising awareness of the opt-out system in England suggest that despite publicising the change with carefully crafted positive messaging, negative views and attitudes are likely to influence interpretation leading to an increase in misinformation [28].…”

“…These concerns are frequently linked to emotional and attitudinal barriers towards organ donation, understanding and acceptance [9]. Four often referenced barriers include (1) jinx factor: superstitious beliefs [13][14][15]; (2) ick factor: feelings of disgust related to donating [13][14][15]; (3) bodily integrity: body must remain intact [13][14][15]; (4) medical mistrust: believing doctors will not save the life of someone on the ODR [13][14][15]. The latter barrier is mostly reported by the general public in countries with opt-out systems [13,14,16] although medical mistrust does feature as a barrier across all organ donation systems.…”

“…Four often referenced barriers include (1) jinx factor: superstitious beliefs [13][14][15]; (2) ick factor: feelings of disgust related to donating [13][14][15]; (3) bodily integrity: body must remain intact [13][14][15]; (4) medical mistrust: believing doctors will not save the life of someone on the ODR [13][14][15]. The latter barrier is mostly reported by the general public in countries with opt-out systems [13,14,16] although medical mistrust does feature as a barrier across all organ donation systems. In addition, it is a reported barrier healthcare staff believe will occur in the UK under an opt-out system [9,16].…”