Public knowledge and attitudes towards consent policies for organ donation in Europe. A systematic review

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Highlights

  • Awareness of consent system is lower in opt-out countries than in opt-in countries

  • Awareness of procedures to express consent or refusal is lower in opt-out countries

  • People agree with opt-in regardless of the consent system in place in their country

  • People prefer opt-in and mandatory choice to opt-out when these options are offered

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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References (51)

  • J. de Groot et al.

    Decision making by relatives about brain death organ donation: an integrative review

    Transplantation

    (2012)
  • C. Haugland et al.

    Factors influencing the relatives decision regarding organ donation in interaction with the intensive care nurses - a meta-synthesis

  • M.J. Irving et al.

    Factors that influence the decision to be an organ donor: a systematic review of the qualitative literature

    Nephrol Dial Transplant Off Publ Eur Dial Transpl Assoc - Eur Ren Assoc

    (2012)
  • A.L. Simpkin et al.

    Modifiable factors influencing relatives' decision to offer organ donation: systematic review

    BMJ

    (2009)
  • S.K. Shah et al.

    A narrative review of the empirical evidence on public attitudes on brain death and vital organ transplantation: the need for better data to inform policy

    J Med Ethics

    (2015)
  • E. Johnson et al.

    Do Defaults save lives?

    Science

    (2003)
  • R.W. Gimbel et al.

    Presumed consent and other predictors of cadaveric organ donation in Europe

    Prog Transplant

    (2003)
  • K. Healy

    Do presumed-consent laws raise organ procurement rates

    DePaul Rev

    (2005)
  • G.B. Neto et al.

    The impact of presumed consent law on organ donation: an empirical analysis from quantile regression for longitudinal data

    Working Paper of Public Health

    (2012)
  • R. Coppen et al.

    The impact of donor policies in Europe: a steady increase, but not everywhere

    BMC Health Serv Res

    (2008)
  • R. Coppen et al.

    Imagining the impact of different consent systems on organ donation: the decisions of next of kin

    Death Stud

    (2010)
  • E. Mossialos et al.

    Does organ donation legislation affect individuals' willingness to donate their own or their relative's organs? Evidence from European Union survey data

    BMC Health Serv Res

    (2008)
  • A. Rithalia et al.

    Impact of presumed consent for organ donation on donation rates: a systematic review

    BMJ

    (2009)
  • F. Bilgel

    The impact of presumed consent laws and institutions on deceased organ donation

    Eur J Health Econ HEPAC Health Econ Prev Care

    (2012)
  • A. Bendorf et al.

    Socioeconomic, demographic and policy comparisons of living and deceased kidney transplantation rates across 53 countries

    Nephrol Ther

    (2013 Sep)
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      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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      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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