The Forum’s publications and Domain summaries: enhancing organ and tissue donation systems
To identify and address common challenges in deceased organ and tissue donation, Transplant Québec and the Canadian Donation and Transplantation Research Program (CDTRP) organized The International Donation and Transplantation Legislative and Policy Forum. The Forum produced 94 evidence-informed expert consensus recommendations to improve organ and tissue donation and transplantation laws and policies. These aspirational recommendations can be adapted for use in donation and transplant systems in Canada and around the world. You can access the Forum’s publications in Transplantation Direct below and download all Domain summaries.
The CDTRP is leading knowledge mobilization efforts to support the implementation of recommendations. To stay informed about The Forum’s ongoing initiatives, we invite you to explore our revamped Forum website. This is where you can access direct links to The Forum’s publications, summaries of recommendations in each domain, fact sheets, and presentations by Dr. Matthew Weiss.
DOMAIN 1: Baseline Ethical Principles
The Baseline Ethical Principles domain proposes an ethical framework to assist stakeholders and decision-makers in incorporating ethical principles into OTDT practice and policy to maintain public trust and integrity.
The domain acknowledged the importance of international standards of baseline ethical principles within OTDT regulations, policies, and legislation, as outlined in the World Health Organization (WHO) Guiding Principles, the Declaration of Istanbul, and the Barcelona Principles. What is less well-established is how to evaluate newly proposed practices or programs according to these principles.
The proposed framework will assist those responsible for making and approving ethical policy decisions consistent with the established international agreements, declarations, and resolutions on the ethical underpinnings of an OTDT system.
DOMAIN 2: Legislation and Policy
The Legislation and Policy domain provides expert guidance for legislative and policy reform. The 12 recommendations outlined in the chapter focus on (1) legal definitions and legislative scope; (2) consent requirements for donation; (3) allocation of organs and tissue; (4) operation of OTDT systems; and (5) travel for transplant and organ trafficking.
Given that OTDT systems vary in how they are regulated, and local cultural, social, and economic factors impact law and policy, the 12 recommendations address fundamental issues in OTDT. Thus, the recommendations could apply wholly or in part to any jurisdiction developing or reforming its system.
DOMAIN 3: Organ Donation Organization Architecture
The Organ Donation Organization Architecture domain provides expert guidance on the components of an effective organ donation organization (ODO), its relationship with OTDT stakeholders, and markers of best practices supporting an effective donation and transplantation care pathway and continuous improvement.
The 33 recommendations represent the foundational markers of a safe, fair, and transparent system that maximizes the number of organs available for transplantation and maintains public trust across all stages of the care pathway.
DOMAIN 4: Organ and Tissue Donation Consent Model and Intent to Donate Registries
The Organ and Tissue Donation Consent Model and Intent to Donate Registries domain provides expert guidance for jurisdictions implementing or reforming their consent model. The consent model working group does not recommend one type of consent model over another.
Instead, the 11 recommendations outlined in this domain discuss the main factors influencing the success of a consent model. These factors include the type of consent model (opt-in vs opt-out), donor registry, marketing campaigns/public education, and the education of healthcare professionals.
DOMAIN 5: Living Donation
Coming soon.
DOMAIN 6: Tissue and Cell Donation
The Tissue and Cell Donation domain provides expert legislative and policy reform guidance. The 13 recommendations outlined in the chapter focus on (1) self-sufficiency of supply, (2) ethics, (3) quality and safety, and (4) innovation for non-profit organizations.
Given that legislation and policies impacting tissue and cell donation and transplantation vary significantly across jurisdictions, this field’s issues warrant separate considerations from other challenges affecting OTDT systems. The recommendations are not intended to provide a prescriptive pathway for implementation. Instead, the recommendations provide a general framework for developing a fair, ethical, safe, and accessible system supporting patient outcomes and self-sufficiency.
DOMAIN 7: Research and Innovation in Organ Donation
The Research and Innovation in Organ Donation domain provides expert guidance on developing a high-performing and ethically robust deceased donation research framework. The 16 recommendations cover the areas of (1) patient, family, donor, and public involvement in research; (2) donor, surrogate, and recipient consent within a research ethics framework; and (3) data management.
The recommendations are intended to strengthen a jurisdiction’s OTDT system while building and maintaining public trust. The domain followed the US National Academics of Science, Engineering, and Medicine report’s goals of developing a robust and ethical deceased donation research framework.