Public knowledge and attitudes towards consent policies for organ donation in Europe. A systematic review
Section snippets
Background
In Europe, opt-out policies (i.e. presumed consent) for deceased organ procurement are an increasingly common strategy to address the organ shortage (Additional file Table 1). Under opt-out laws, individuals are automatically considered donors after death unless they have explicitly objected during their lifetime. Some European countries have had this system for several years (e.g. Spain, Austria) and others have recently considered or achieved legislative changes (Table 1). Scotland and
Study selection
We followed a seven-step approach for systematic reviews of empirical studies in bioethics, including the MIP model (methodology, issues, participants) to define research questions and inclusion/exclusion criteria [28]. We sought both quantitative and qualitative empirical studies addressing either knowledge or attitudes towards the systems of consent for post-mortem OD by lay people in Europe. Full details of the search strategy, selection criteria, data extraction and quality assessment are
Results
The search yielded 1,482 citations, with 467 assessed in full-text form (Fig. 1). Seventy studies were eventually retained, comprising 42 scientific articles and 28 surveys. Ten of these studies deal exclusively with the role of the family and are not included in this qualitative synthesis. The remaining 60 results are numbered according to the following convention: published articles are signalled by the letter “A”; grey literature reports are signalled by the letter “G” (Additional file Table
Discussion
The relative impact of the model of consent on organ donation rates is controversial. Some have argued that opt-out regulations lead straight to larger pools of organs for transplantation [4,12,13,15,16,19,22,23], while others dispute this claim [14,17,18,20,21,24,[31], [32], [33], [34], [35]]. The ethical acceptability of presumed consent is also a debated issue, with arguments in favour [[36], [37], [38], [39]] and against [[40], [41], [42], [43], [44]]. This review explores people's
Conclusions
Identifying and addressing public views towards the consent system for organ procurement is key in developing effective and ethical organ donation policies. This study provides the first comprehensive systematic review of available studies conducted in European countries on public knowledge and attitudes towards different models of consent for deceased organ donation, including presumed consent (opt-out), and expressed consent (opt-in).
Our findings show that people's awareness of the consent
Competing interests
The authors declare that they have no competing interests.
Acknowledgments
We thank Anja Marie Bornø Jensen for her contribution in the process of data extraction. We thank David Shaw for useful comments and recommendations. We also thank especially Fátima Al Mesri Rodríguez for her assistance in several parts of the process.
Funding
This study was conducted as part of the RESPONSE [Research on Ethical Strategies to Increase Organ Donation in Europe] project (FFI2015-62699-ERC) funded by the Spanish Ministry of Economy, Spain. The funding body had no role in the design of the study, data collection, data analysis, data interpretation, nor in writing the manuscript.
Authors' contributions
AMP and DRA designed and conducted the study and wrote the manuscript. JD gathered all the data about consent systems legislations in European countries. MM and SiSchi supervised the methodology as well as the interpretation and reporting of results, and together with JD, contributed to eligibility assessment, quality assessment, data extraction, and drafting the manuscript. MF, JR, ES, and SW contributed to eligibility assessment, quality assessment, and data extraction. GR contributed to
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Should the family have a role in deceased organ donation decision-making? A systematic review of public knowledge and attitudes towards organ procurement policies in Europe
2022, Transplantation ReviewsCitation Excerpt :The main objective of this SR was to measure the levels of public knowledge and support towards these policies. A partial synthesis of results from this SR, focusing specifically on individual consent, has been published elsewhere [18]. In this article, we provide a partial synthesis of results that focuses on knowledge and attitudes towards the role of the family.
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2021, Transplantation ReviewsCitation Excerpt :This assumption has raised ethical concerns that identify presumed consent registration as a form of nudge [38], in itself a type of ‘manipulative’ influence in public health contexts [39]. Additionally, the libertarian principle that every citizen is given the option to opt out of donation, and thus autonomy of choice is respected, has been put into question arguing that in most opt-out countries significant proportions of the population are unaware of the policy [40,41] . Despite opt-out being hailed as the solution to the enduring problem of consent [3,42], the fact is that in practice the donor's consent cannot be presumed or deemed without the authorization of donor families.
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Contributed equally