![](\"https:\/\/cdtrp.ca\/wp-content\/uploads\/2023\/04\/International-Forum-Website-Header.png\" "\\"International")
<\/span><\/div><\/div>Overview<\/strong><\/span><\/h3>\nTransplant Qu\u00e9bec and the Canadian Donation and Transplantation Research Program co-hosted The International Donation and Transplantation Legislative and Policy Forum<\/strong> (the Forum). The Forum assembled 61 international experts in donation and transplantation, including patient, family, and donor partners, to provide guidance on the structure of an ideal organ and tissue donation and transplantation (OTDT) system. The Forum developed 94 evidence informed expert consensus recommendations with the objective of improving organ and tissue donation and transplantation laws and policy.<\/p>\nSeven working groups <\/strong>– called “Domain”<\/strong> – were responsible for generating the topics that merit recommendations, gathering and summarizing relevant evidence related to these topics, and creating recommendations. The recommendations link evidence and ethical concepts to legislative and policy reform and are applicable to jurisdictions developing or reforming their OTDT system. See the details of each Domain below.<\/p>\n<\/div><\/div><\/i><\/i><\/span>Domain 1 \u2013 Baseline Ethical Principles<\/span><\/a><\/h4><\/div>\nLead: <\/strong><\/span>Dr. Dale Gardiner, NHS Blood and Transplant, London, United Kingdom<\/strong><\/h6>\nAuthorship Committee:<\/strong><\/span><\/h6>\n\n- Dr. Curie Ahn, National Medical Center, Seoul, South Korea<\/li>\n
- Dr. Aviva Goldberg, University of Manitoba, Winnipeg, Canada<\/li>\n
- Dr. Matthew Weiss, Transplant Qu\u00e9bec, Qu\u00e9bec, Canada<\/li>\n
- Dr. Andrew McGee, Australian Centre for Health Law Research, Faculty of Business and Law, QUT, Brisbane, Australia<\/li>\n
- Dr. Sanjay Nagral, Jaslok Hospital & Research Centre, Mumbai, India<\/li>\n
- Prof. Christy Simpson, Department of Bioethics, Dalhousie University (Primary appt); Australian Centre for Health Law Research (Adjunct appt); Canadian Blood Services (Bioethics Consultant), Halifax, Canada<\/li>\n
- Mr. Austin Kinsella, CDTRP Patient, Family and Donor Researcher Partnership Platform<\/li>\n<\/ul>\n
\nSUMMARY<\/strong><\/span><\/h6>\nThe Baseline Ethical Principles<\/em> 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.<\/span>\u00a0<\/span><\/p>\nThe 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.\u00a0<\/span>\u00a0<\/span><\/p>\nThe 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.<\/span>\u00a0<\/span><\/p>\nAccess the publication<\/span><\/span><\/a> | Download Domain Summary<\/a><\/strong><\/p>\n<\/div><\/div><\/div><\/i><\/i><\/span>Domain 2 \u2013 Legislation and Policy<\/span><\/a><\/h4><\/div>\nLead: <\/strong><\/span>Prof. Maeghan Toews, University of Adelaide, Adelaide, Australia<\/strong><\/h6>\nAuthorship Committee:<\/strong><\/span><\/h6>\n\n- Prof. Jennifer Chandler, University of Ottawa, Ottawa, Canada<\/li>\n
- Dr. Matthew Weiss, Transplant Qu\u00e9bec, Qu\u00e9bec, Canada<\/li>\n
- Prof. Thadeus Masson Pope, Mitchell Hamline School of Law, Ottawa, Canada<\/li>\n
- Mr. Alberto Sandiumenge, University Hospital Vall d\u2019Hebron, Barcelona, Spain<\/li>\n
- Mr. Roger Pape, CDTRP Patient, Family and Donor Researcher Partnership Platform<\/li>\n<\/ul>\n
\nSUMMARY<\/strong><\/span><\/h6>\nThe Legislation and Policy<\/em> 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.\u00a0<\/span>\u00a0<\/span><\/p>\nGiven 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.\u00a0<\/span>\u00a0<\/span><\/p>\nAccess the publication<\/span><\/span><\/a> | Download Domain Summary<\/a><\/strong><\/p>\n<\/div><\/div><\/div><\/i><\/i><\/span>Domain 3 \u2013 Organ Donation Organization Architecture<\/span><\/a><\/h4><\/div>\nLeads: <\/strong><\/span>Dr. Howard Nathan, <\/strong>Gift of Life Donor Program, Philadelphia, United States,\u00a0Ms. Susan Gunderson, <\/strong>LifeSource, Minneapolis, United States, and Ms. Claire Willement<\/strong>, NHS Blood and Transplant, London, United Kingdom<\/h6>\nAuthorship Committee:<\/strong><\/span><\/h6>\n\n- Mr. Louis Beaulieu, Chief Executive Officer, Transplant Qu\u00e9bec, Montreal, Canada<\/li>\n
- Dr. Matthew Weiss, Transplant Qu\u00e9bec, Qu\u00e9bec, Canada<\/li>\n
- Mr. Manuel Escoto, Canadian Donation and Transplantation Research Program, Edmonton, Canada<\/li>\n
- Mr. Anthony Clarkson, NHS Blood and Transplant, London, United Kingdom<\/li>\n
- Mr. David Hartell, Canadian Blood Services, Ottawa, Canada<\/li>\n
- Dr. G\u00fcnther Kirste, Albert Ludwigs University Freiburg, Medical Center, Freiburg, Germany<\/li>\n
- Ms. Helen Opdam, Australian Organ and Tissue Authority, Victoria, Australia<\/li>\n
- Dr. Haibo Wang, China Organ Transplant Response System, Hong Kong, China<\/li>\n
- Ms. Linda Powell, CDTRP Patient, Family and Donor Researcher Partnership Platform<\/li>\n
- Mr. Richard Ippersiel, CDTRP Patient, Family and Donor Researcher Partnership Platform<\/li>\n<\/ul>\n
\nSUMMARY<\/strong><\/span><\/h6>\n![\"\"](\"https:\/\/cdtrp.ca\/wp-content\/uploads\/2023\/10\/Organ-Donation-Systems-Visual-Abstract-V2-DH-1024x576.png\")
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The Organ Donation Organization Architecture<\/em> 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.<\/span>\u00a0<\/span><\/p>\nThe 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.<\/span>\u00a0<\/span><\/p>\nAccess the publication<\/span><\/span><\/a> | Download Domain Summary<\/a><\/strong><\/p>\n<\/div><\/div><\/div><\/i><\/i><\/span>Domain 4 \u2013 Organ and Tissue Donation Consent Model and Intent to Donate Registries<\/span><\/a><\/h4><\/div>\nLead: <\/strong><\/span>Mr. Phil Walton, NHS Blood and Transplant, London, United Kingdom<\/strong><\/h6>\nAuthorship Committee:<\/strong><\/span><\/h6>\n\n- Dr. Stephen Beed, Dalhousie University, Halifax, Canada<\/li>\n
- Dr. Alicia Perez Blanco, Organizacion nacional de trasplantes (ONT), Madrid, Spain<\/li>\n
- Ms. Alexandra Glazier, New England Organ Bank (CEO), Boston, United States<\/li>\n
- Dr. Daniela Salom\u00e3o, Health Department of the Distrito Federal Government, Sao Paulo, Brazil<\/li>\n
- Dr. Matthew Weiss, Medical Director \u2013 Organ Donation, Transplant Qu\u00e9bec, Quebec, Canada<\/li>\n
- Ms. Kim Jordison, CDTRP Patient, Family and Donor Researcher Partnership Platform<\/li>\n
- Ms. Jennifer Kingdon, CDTRP Patient, Family and Donor Researcher Partnership Platform<\/li>\n<\/ul>\n
\nSUMMARY<\/strong><\/span><\/h6>\nThe<\/span> Organ and Tissue Donation Consent Model and Intent to Donate Registries<\/span><\/i> 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.\u00a0<\/span>\u00a0<\/span><\/p>\nInstead, the 11 recommendations outlined in this domain discuss <\/span>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.<\/span>\u00a0<\/span><\/p>\nAccess the publication<\/span><\/span><\/a> | Download Domain Summary<\/a><\/strong><\/p>\n<\/div><\/div><\/div><\/i><\/i><\/span>Domain 5 \u2013 Living Donation<\/span><\/a><\/h4><\/div>\nLead: <\/strong><\/span>Dr. Elmi Muller, University of Cape Town, Cape Town, South Africa<\/strong><\/h6>\nAuthorship Committee:<\/strong><\/span><\/h6>\n\n- Dr. Prosanto Chaudhury, McGill University Health Centre; Medical Director \u2013 Organ Transplantation, Transplant Qu\u00e9bec; Montreal, Canada<\/li>\n
- Dr. Jongwon Ha, Department of Surgery, Seoul National University College of Medicine, Seoul National University Hospital, Seoul, South Korea<\/li>\n
- Mr. Kirit Mistry, South Asian Health Action Patient, Family, Donor Partner<\/li>\n
- Dr. Michel Paquet, Centre hospitalier de l\u2019Universit\u00e9 de Montr\u00e9al (CHUM), Montreal, Canada<\/li>\n
- Dr. Sunita Singh, University of Toronto, Toronto General Hospital \/ University Health Network, Toronto, Canada<\/li>\n
- Ms. Shilpa Raju, CDTRP Patient, Family and Donor Researcher Partnership Platform<\/li>\n
- Mr. Larry Workfolk, CDTRP Patient, Family and Donor Researcher Partnership Platform<\/li>\n<\/ul>\n
Scope and Core Themes:<\/strong><\/span><\/h6>\n\n- Donor safety: clinical safety for the donor, long-term follow-up, access to treatment if needed, and donors who travel to donate<\/li>\n
- Non-directed anonymous donors: kidney exchange program, open chains, advanced donation (voucher system)<\/li>\n
- Financial neutrality & other barriers to living donation: financial barriers, education awareness, cultural & gender issues, disparate access, prioritization, insurability, and long-term follow-up<\/li>\n
- Public solicitation: Use of various platforms, including social media, to solicit a donor<\/li>\n
- Minor donors: Not a core theme, but should it be included?<\/li>\n<\/ul>\n<\/div><\/div><\/div>
<\/i><\/i><\/span>Domain 6 \u2013 Tissue and Cell Donation<\/span><\/a><\/h4><\/div>\nLead: <\/strong><\/span>Dr. Jacinto Sanchez Iba\u00f1ez, Galician Health Services, A Coruna University Hospital, Coruna, Spain<\/strong><\/h6>\nAuthorship Committee:<\/strong><\/span><\/h6>\n\n- Ms. Maria del Mar Lomero Martinez, Council of Europe, Strasbourg, France<\/li>\n
- Dr. Matthew Weiss, Transplant Qu\u00e9bec, Qu\u00e9bec, Canada<\/li>\n
- Mr. Manuel Escoto, Canadian Donation and Transplantation Research Program, Edmonton, Canada<\/li>\n
- Ms. Marta Fraga, Council of Europe, Strasbourg, France<\/li>\n
- Ms. Christine Humphreys, Eye Bank of Canada \u2013 Ontario Division, Toronto, Canada<\/li>\n
- Mr. Murray Wilson, CDTRP Patient, Family and Donor Researcher Partnership Platform<\/li>\n<\/ul>\n
\nSUMMARY<\/strong><\/span><\/h6>\n![\"\"](\"https:\/\/cdtrp.ca\/wp-content\/uploads\/2023\/10\/Tissue-Donation-Visual-Abstract-2023-01-12-1024x576.png\")
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The<\/span> Tissue and Cell Donation<\/span><\/i> 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.\u00a0<\/span>\u00a0<\/span><\/p>\nGiven 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.\u00a0\u00a0<\/span>\u00a0<\/span><\/p>\nAccess the publication<\/span><\/span><\/a> | Download Domain Summary<\/a><\/strong><\/p>\n<\/div><\/div><\/div>
Seven working groups <\/strong>– called “Domain”<\/strong> – were responsible for generating the topics that merit recommendations, gathering and summarizing relevant evidence related to these topics, and creating recommendations. The recommendations link evidence and ethical concepts to legislative and policy reform and are applicable to jurisdictions developing or reforming their OTDT system. See the details of each Domain below.<\/p>\n<\/div> The Baseline Ethical Principles<\/em> 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.<\/span>\u00a0<\/span><\/p>\n 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.\u00a0<\/span>\u00a0<\/span><\/p>\n 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.<\/span>\u00a0<\/span><\/p>\n Access the publication<\/span><\/span><\/a> | Download Domain Summary<\/a><\/strong><\/p>\n<\/div><\/div><\/div> The Legislation and Policy<\/em> 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.\u00a0<\/span>\u00a0<\/span><\/p>\n 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.\u00a0<\/span>\u00a0<\/span><\/p>\n Access the publication<\/span><\/span><\/a> | Download Domain Summary<\/a><\/strong><\/p>\n<\/div><\/div><\/div> The Organ Donation Organization Architecture<\/em> 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.<\/span>\u00a0<\/span><\/p>\n 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.<\/span>\u00a0<\/span><\/p>\n Access the publication<\/span><\/span><\/a> | Download Domain Summary<\/a><\/strong><\/p>\n<\/div><\/div><\/div> The<\/span> Organ and Tissue Donation Consent Model and Intent to Donate Registries<\/span><\/i> 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.\u00a0<\/span>\u00a0<\/span><\/p>\n Instead, the 11 recommendations outlined in this domain discuss <\/span>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.<\/span>\u00a0<\/span><\/p>\n Access the publication<\/span><\/span><\/a> | Download Domain Summary<\/a><\/strong><\/p>\n<\/div><\/div><\/div> The<\/span> Tissue and Cell Donation<\/span><\/i> 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.\u00a0<\/span>\u00a0<\/span><\/p>\n 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.\u00a0\u00a0<\/span>\u00a0<\/span><\/p>\n Access the publication<\/span><\/span><\/a> | Download Domain Summary<\/a><\/strong><\/p>\n<\/div><\/div><\/div><\/i><\/i><\/span>Domain 1 \u2013 Baseline Ethical Principles<\/span><\/a><\/h4><\/div>
Lead: <\/strong><\/span>Dr. Dale Gardiner, NHS Blood and Transplant, London, United Kingdom<\/strong><\/h6>\n
Authorship Committee:<\/strong><\/span><\/h6>\n
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\nSUMMARY<\/strong><\/span><\/h6>\n
<\/i><\/i><\/span>Domain 2 \u2013 Legislation and Policy<\/span><\/a><\/h4><\/div>
Lead: <\/strong><\/span>Prof. Maeghan Toews, University of Adelaide, Adelaide, Australia<\/strong><\/h6>\n
Authorship Committee:<\/strong><\/span><\/h6>\n
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\nSUMMARY<\/strong><\/span><\/h6>\n
<\/i><\/i><\/span>Domain 3 \u2013 Organ Donation Organization Architecture<\/span><\/a><\/h4><\/div>
Leads: <\/strong><\/span>Dr. Howard Nathan, <\/strong>Gift of Life Donor Program, Philadelphia, United States,\u00a0Ms. Susan Gunderson, <\/strong>LifeSource, Minneapolis, United States, and Ms. Claire Willement<\/strong>, NHS Blood and Transplant, London, United Kingdom<\/h6>\n
Authorship Committee:<\/strong><\/span><\/h6>\n
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\nSUMMARY<\/strong><\/span><\/h6>\n
<\/p>\n<\/i><\/i><\/span>Domain 4 \u2013 Organ and Tissue Donation Consent Model and Intent to Donate Registries<\/span><\/a><\/h4><\/div>
Lead: <\/strong><\/span>Mr. Phil Walton, NHS Blood and Transplant, London, United Kingdom<\/strong><\/h6>\n
Authorship Committee:<\/strong><\/span><\/h6>\n
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\nSUMMARY<\/strong><\/span><\/h6>\n
<\/i><\/i><\/span>Domain 5 \u2013 Living Donation<\/span><\/a><\/h4><\/div>
Lead: <\/strong><\/span>Dr. Elmi Muller, University of Cape Town, Cape Town, South Africa<\/strong><\/h6>\n
Authorship Committee:<\/strong><\/span><\/h6>\n
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Scope and Core Themes:<\/strong><\/span><\/h6>\n
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<\/i><\/i><\/span>Domain 6 \u2013 Tissue and Cell Donation<\/span><\/a><\/h4><\/div>
Lead: <\/strong><\/span>Dr. Jacinto Sanchez Iba\u00f1ez, Galician Health Services, A Coruna University Hospital, Coruna, Spain<\/strong><\/h6>\n
Authorship Committee:<\/strong><\/span><\/h6>\n
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\nSUMMARY<\/strong><\/span><\/h6>\n
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