Walton Phil, Pérez-Blanco Alicia, Beed Stephen, Glazier Alexandra, Ferreira Salomao Pontes Daniela, Kingdon Jennifer, Jordison Kim, Weiss Matthew J
Organ and Tissue Donation and Transplantation, NHS Blood and Transplant, London, United Kingdom.
Organización Nacional de Trasplantes, Madrid, Spain.
Transplant Direct. 2023 Apr 28;9(5):e1416. doi: 10.1097/TXD.0000000000001416. eCollection 2023 May.
Consent model and intent to donate registries are often the most public facing aspects of an organ and tissue donation and transplantation (OTDT) system. This article describes the output of an international consensus forum designed to give guidance to stakeholders considering reform of these aspects of their system.
This Forum was initiated by Transplant Québec and cohosted by the Canadian Donation and Transplantation Program partnered with multiple national and international donation and transplantation organizations. This article describes the output of the consent and registries domain working group, which is 1 of 7 domains from this Forum. The domain working group members included administrative, clinical, and academic experts in deceased donation consent models in addition to 2 patient, family, and donor partners. Topic identification and recommendation consensus was completed over a series of virtual meetings from March to September 2021. Consensus was achieved by applying the nominal group technique informed by literature reviews performed by working group members.
Eleven recommendations were generated and divided into 3 topic groupings: consent model, intent to donate registry structure, and consent model change management. The recommendations emphasized the need to adapt all 3 elements to the legal, societal, and economic realities of the jurisdiction of the OTDT system. The recommendations stress the importance of consistency within the system to ensure that societal values such as autonomy and social cohesion are applied through all levels of the consent process.
We did not recommend one consent model as universally superior to others, although considerations of factors that contribute to the successful deployment of consent models were discussed in detail. We also include recommendations on how to navigate changes in the consent model in a way that preserves an OTDT system's most valuable resource: public trust.
同意模式和捐赠意愿登记系统往往是器官和组织捐赠与移植（OTDT）系统中最面向公众的方面。本文介绍了一个国际共识论坛的成果，该论坛旨在为考虑对其系统这些方面进行改革的利益相关者提供指导。
该论坛由魁北克移植协会发起，由加拿大捐赠与移植项目共同主办，并与多个国家和国际捐赠与移植组织合作。本文描述了同意和登记领域工作组的成果，该工作组是该论坛七个领域之一。该领域工作组成员包括已故捐赠同意模式方面的行政、临床和学术专家，此外还有两名患者、家属和捐赠者代表。主题确定和建议共识在2021年3月至9月的一系列虚拟会议上完成。通过应用由工作组成员进行的文献综述提供信息的名义群体技术达成了共识。
共提出了11项建议，并分为3个主题类别：同意模式、捐赠意愿登记系统结构以及同意模式变更管理。这些建议强调需要使所有这三个要素适应OTDT系统管辖范围内的法律、社会和经济现实。这些建议强调了系统内一致性的重要性，以确保诸如自主性和社会凝聚力等社会价值观在同意过程的各个层面得到应用。
我们并没有推荐一种同意模式普遍优于其他模式，尽管详细讨论了有助于成功部署同意模式的因素。我们还包括了关于如何以保护OTDT系统最宝贵资源——公众信任的方式应对同意模式变化的建议。
