Aperçu général
En 2021, Transplant Québec et le Programme de recherche en don et transplantation du Canada ont organisé conjointement le Forum législatif et politique international sur le don et la transplantation (le Forum). Le Forum a réuni 57 experts internationaux du don et de la transplantation, y compris des patients, familles et donneurs partenaires, afin de fournir des conseils sur la structure d’un système idéal de don et de transplantation d’organes et de tissus (DTOT).
Sept groupes de travail – appelés « chapitres » – ont été chargés de générer les sujets méritant des recommandations, de rassembler et de résumer les preuves pertinentes liées à ces sujets, et de créer des recommandations. Les recommandations relient les preuves et les concepts éthiques à la réforme législative et politique et sont applicables aux juridictions qui développent ou réforment le système de DTOT. Voir les détails de chaque chapitre ci-dessous.
Lead: Dr. Dale Gardiner, NHS Blood and Transplant, London, United Kingdom
Authorship Committee:
- Dr. Curie Ahn, National Medical Center, Seoul, South Korea
- Dr. Aviva Goldberg, University of Manitoba, Winnipeg, Canada
- Dr. Andrew McGee, Australian Centre for Health Law Research, Faculty of Business and Law, QUT, Brisbane, Australia
- Dr. Sanjay Nagral, Jaslok Hospital & Research Centre, Mumbai, India
- 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
- Ms. Carmen Carrière, CDTRP Patient, Family and Donor Researcher Partnership Platform
- Mr. Austin Kinsella, CDTRP Patient, Family and Donor Researcher Partnership Platform
Scope and Core Themes:
- Self-sufficiency: Jurisdictions should strive for self-sufficiency by providing sufficient organs for their residents.
- Efficacy: Jurisdictions should implement legislation/policy/laws etc., that work.
- Universality: Speaks to the concept of margins of appreciation (MoA). Speaks to setting limits, and MoA should accommodate where disagreements occur as long as it does not contradict a universal principle (i.e. murder for donation).
- Protection: Jurisdictions should think about and implement policies that protect the vulnerable, including donors, recipients, and others impacted by donation and transplantation.
Lead: Prof. Maeghan Toews, University of Adelaide, Adelaide, Australia
Authorship Committee:
- Prof. Jennifer Chandler, University of Ottawa, Ottawa, Canada
- Ms. Meredith Maloof, Indigenous Law Centre – University of Saskatchewan, Winnipeg, Canada
- Prof. Thadeus Masson Pope, Mitchell Hamline School of Law, Ottawa, Canada
- Mr. Alberto Sandiumenge, University Hospital Vall d’Hebron, Barcelona, Spain
- Mr. Roger Pape, CDTRP Patient, Family and Donor Researcher Partnership Platform
- Ms. Kim Soutar, CDTRP Patient, Family and Donor Researcher Partnership Platform
Scope and Core Themes:
- Public Trust
- Equity & Fairness & Justice
- Individual Autonomy
- Respect for Human Rights
- Improve population health/wellbeing through donation and transplantation
Leads: Dr. Howard Nathan, Gift of Life Donor Program, Philadelphia, United States, Ms. Susan Gunderson, LifeSource, Minneapolis, United States, and Ms. Claire Willement, NHS Blood and Transplant, London, United Kingdom
Authorship Committee:
- Mr. Louis Beaulieu, Chief Executive Officer, Transplant Québec, Montreal, Canada
- Mr. Anthony Clarkson, NHS Blood and Transplant, London, United Kingdom
- Mr. David Hartell, Canadian Blood Services, Ottawa, Canada
- Dr. Günther Kirste, Albert Ludwigs University Freiburg, Medical Center, Freiburg, Germany
- Ms. Helen Opdam, Australian Organ and Tissue Authority, Victoria, Australia
- Dr. Haibo Wang, China Organ Transplant Response System, Hong Kong, China
- Ms. Linda Powell, CDTRP Patient, Family and Donor Researcher Partnership Platform
- Mr. Richard Ippersiel, CDTRP Patient, Family and Donor Researcher Partnership Platform
Scope and Core Themes:
- Data collection and reporting: At all stages of the donation and transplantation care pathways; Needs to be timely, accurate and easily accessible for those who need it; Needs to drive decision making, action, and improvements; Needs to be safely and legally stored.
- Roles; accountability; legal authority: It needs to be clear who does what, why and when and where accountability lies at local, regional and national levels and under which This includes accountability for safety; quality assurance; quality improvement; regulators etc
- Frameworks and best practice guidance: clinical; legal guidance to help interpret the law; ethical guidance to inform clinical decision making; used to inform action at local, regional and national levels; maintains public and clinical confidence in the system
- Education (clinical and public): Training and education to support the clinical service; public awareness to improve awareness and support, dispel myths, support community leaders in raising awareness at a local level
- Collaboration: At all stages of the care pathway; between all stakeholders (critical care teams; ODOs; regulators; transplant teams etc.); provide seamless care for donors and their families; support organ viability assessment; local, regional, national and international to share learning and best practice
Lead: Mr. Phil Walton, NHS Blood and Transplant, London, United Kingdom
Authorship Committee:
- Dr. Stephen Beed, Dalhousie University, Halifax, Canada
- Dr. Alicia Perez Blanco, Organizacion nacional de trasplantes (ONT), Madrid, Spain
- Ms. Alexandra Glazier, New England Organ Bank (CEO), Boston, United States
- Dr. Daniela Salomão, Health Department of the Distrito Federal Government, Sao Paulo, Brazil
- Dr. Matthew Weiss, Medical Director – Organ Donation, Transplant Québec, Quebec, Canada
- Ms. Kim Jordison, CDTRP Patient, Family and Donor Researcher Partnership Platform
- Ms. Jennifer Kingdon, CDTRP Patient, Family and Donor Researcher Partnership Platform
Scope and Core Themes:
- Consent Models: to include opt-in, opt-out, reciprocity, incentives, and mandated choice
- Operational Delivery: how to convert policy into practice
- Engagement: when introducing a change, you need support (public, health professionals, faith groups, charities, etc.)
- Donor Registry: explore the merits of a registry
Lead: Dr. Elmi Muller, University of Cape Town, Cape Town, South Africa
Authorship Committee:
- Dr. Prosanto Chaudhury, McGill University Health Centre; Medical Director – Organ Transplantation, Transplant Québec; Montreal, Canada
- Dr. Jongwon Ha, Department of Surgery, Seoul National University College of Medicine, Seoul National University Hospital, Seoul, South Korea
- Mr. Kirit Mistry, South Asian Health Action Patient, Family, Donor Partner
- Dr. Michel Paquet, Centre hospitalier de l’Université de Montréal (CHUM), Montreal, Canada
- Dr. Sunita Singh, University of Toronto, Toronto General Hospital / University Health Network, Toronto, Canada
- Ms. Shilpa Raju, CDTRP Patient, Family and Donor Researcher Partnership Platform
- Mr. Larry Workfolk, CDTRP Patient, Family and Donor Researcher Partnership Platform
Scope and Core Themes:
- Donor safety: clinical safety for the donor, long-term follow-up, access to treatment if needed, and donors who travel to donate
- Non-directed anonymous donors: kidney exchange program, open chains, advanced donation (voucher system)
- Financial neutrality & other barriers to living donation: financial barriers, education awareness, cultural & gender issues, disparate access, prioritization, insurability, and long-term follow-up
- Public solicitation: Use of various platforms, including social media, to solicit a donor
- Minor donors: Not a core theme, but should it be included?
Lead: Dr. Jacinto Sanchez Ibañez, Galician Health Services, A Coruna University Hospital, Coruna, Spain
Authorship Committee:
- Ms. Maria del Mar Lomero Martinez, Council of Europe, Strasbourg, France
- Mr. Étienne Fissette, Héma-Québec, Montreal, Canada
- Ms. Marta Fraga, Council of Europe, Strasbourg, France
- Ms. Christine Humphreys, Eye Bank of Canada – Ontario Division, Toronto, Canada
- Mr. Murray Wilson, CDTRP Patient, Family and Donor Researcher Partnership Platform
Scope and Core Themes:
- Self-sufficiency (and where relevant, cells) for human application: based on voluntary, non-remunerated donation, and security of supply
- Quality and safety of tissues and cells for human application
- Robust ethical principles: Fostering the development of safe and effective innovative options for the not-for-profit setting
Lead: Dr. Mélanie Dieudé, Héma-Québec; CDTRP; Université de Montréal; Montréal, Canada
Authorship Committee:
- Dr. Florence Cayouette, Children’s Hospital of Eastern Ontario, Ottawa, Canada
- Dr. Prosanto Chaudhury, McGill University Health Centre; Medical Director – Organ Transplantation, Transplant Québec; Montreal, Canada
- Dr. Henrietta Consolo, University of Glasgow, Glasgow, United Kingdom
- Dr. Sonny Dhanani, Children’s Hospital of Eastern Ontario, Ottawa, Canada
- Mr. Manuel Escoto, Canadian Donation and Transplantation Research Program, Edmonton, Canada
- Prof. Fadi Issa, University of Oxford, Oxford, United Kingdom
- Dr. Gabriel Oniscu, Edinburgh Transplant Centre & University of Edinburgh, Edinburgh, United Kingdom
- Ms. Karen Rockell, UK Organ Donation & Transplantation Research Network Patient, Family, Donor Partner
- Dr. Wenshi Jiang, Shenzhen, People’s Republic of China
- Dr. Nicholas Murphy, CDTRP Trainee
Scope and Core Themes:
- Research Consent
- Data Management: including data collection, storage, and sharing
- Research ethical standards
- Patient partnerships in research
Le Forum s’est concentré sur :
- Les principes éthiques fondamentaux liés au DTOT ;
- L’examen des systèmes juridiques nécessaires au DTOT, y compris les modèles de consentement au don, les lois sur le don d’organes et de tissus et les lois sur la référence obligatoire ;
- La comparaison et l’évaluation des modèles d’organismes de don d’organes les plus associés à des systèmes de DTOT fructueux ;
- L’interactions entre les systèmes de don d’organes et de tissus de personnes décédées ;
- Les considérations juridiques et systémiques des programmes de don vivant ;
- Les questions liées à la recherche et à l’innovation dans les systèmes de DTOT.
Comité scientifique
(en ordre alphabétique)
Louis Beaulieu
Marcelo Cantarovich
Jennifer Chandler
Prosanto Chaudhury
Rosanne Dawson
Mélanie Dieudé
Ed Ferre
Aviva Goldberg
Susan Gunderson
David Hartell
Sam Shemie
Marie Josée Simard
Matthew Weiss
Jennifer Woolfsmith
Comité de planification
(en ordre alphabétique)
Louis Beaulieu
Prosanto Chaudhury
Mélanie Dieudé
Manuel Escoto
Patricia Gongal
David Hartell
Lee James
Catherine Lachance
Stéphanie Larivière
Annie-Carole Martel
Marie Josée Simard
Kristian Stephens
Matthew Weiss
Chronologie du Forum

Stratégie de transfert des connaissances
Une fois les recommandations finalisées, l’étape suivante consiste à soutenir leur mise en œuvre, aux niveaux régional, national et international. Le principal résultat sera une série de publications en libre accès décrivant la recommandation et les preuves à l’appui. Les recommandations seront également diffusées par le biais de conférences scientifiques, de webinaires, de fiches d’information et de rapports de synthèse.
Les objectifs de la stratégie de transfert des connaissances du Forum sont les suivants :
Sensibiliser et promouvoir l’action sur les recommandations du Forum en matière de don et de transplantation d’organes et de tissus, ainsi que les changements politiques et législatifs ;
Informer les patients, les familles et les donneurs (PFD), les professionnels de la santé, les centres de don et transplantation, les gouvernements, provinciaux et territoriaux et fédéral ;
Influencer les comportements et soutenir les actions fondées sur des preuves de la part des décideurs politiques au sein des gouvernements et des établissements de soins de santé ;
Soutenir les PFD partenaires et les groupes de patients qui s’engagent dans la conduite du changement.
L’équipe du PRDTC, en collaboration avec Transplant Québec, a rédigé jusqu’à maintenant trois fiches d’information portant sur les sujets suivants :
- Référence obligatoire
- Collecte de données et reddition de comptes
- Modèles de consentement
La fiche d’information sur la référence obligatoire a aidé les décideurs du gouvernement de l’Alberta à mieux comprendre ce sujet lors de l’examen, du débat et de l’application du projet de loi 205. Des portions de cette fiche d’information ont d’ailleurs été lues dans le cadre du débat sur le projet de loi par les membres de l’Assemblée législative de l’Alberta le 2 mai 2022.
Vous pouvez télécharger les fiches d’information ci-dessous.
Partenaires
Transplant Québec, le Programme de recherche en don et transplantation du Canada, The Transplantation Society, la Société canadienne de transplantation, la Société canadienne du sang et l’International Society for Organ Donation and Procurement sont tous des partenaires officiels qui ont contribué au contenu scientifique et participeront à la distribution des recommandations.