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Overview

In 2021, Transplant Québec and the Canadian Donation and Transplantation Research Program co-hosted The International Donation and Transplantation Legislative and Policy Forum (the Forum). The Forum assembled 57 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.

Seven chapter working groups 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 chapter below.

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

The scope of the Forum focused on:

  • Fundamental ethical principles related to OTDT;
  • Consideration of legal systems required for OTDT, including consent models for donation, organ and tissue gift acts, and mandatory referral laws;
  • Comparison and evaluation of models of organ donation organizations most associated with successful OTDT systems;
  • Interactions between deceased organ and tissue donation systems;
  • Legal and system considerations of living donation programs;
  • Issues related to research and innovation in OTDT systems
Scientific Committee

(in alphabetical order)

  • 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

Planning Committee

(in alphabetical order)

  • 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

Timeline of the Forum

Knowledge Translation Strategy

With the recommendations finalized, the next step is to support their movement into action, at regional, national, and international levels. The primary output will be a series of open access publications outlining the recommendation and supporting evidence. The recommendations will also be distributed through scientific conferences, webinars, fast facts information sheets and summary reports.

The objectives of the Forum’s KT strategy are to:
  • Raise awareness and promote action on the Forum’s recommendations of organ and tissue donation and transplantation policy and legislative changes;

  • Inform patients, families, and donors (PFD) health professionals, transplant and donation centers (ODOs), Federal, Provincial, and Territorial Governments;

  • Influence behaviour and support evidence-based action from policy makers within governments and health care settings;

  • Support PFD partners and patient groups who are engaged in driving change.

The CDTRP team along with Transplant Québec completed two information factsheets on Mandatory Referral and on Data Collecting and Public Reporting. Elected officials in Alberta, Canada, used and cited these factsheets during debate in support of Bill 205, the Human Tissue and Organ Donation (Mandatory Referral) Amendment Act, 2022. The Mandatory Referral fact sheet helped Alberta government policy makers better understand this topic as they review, debate, and process Bill 205. Portions of this fact sheet were stated as part the Bill’s debate by Members of the Alberta Legislative Assembly on May 2, 2022.

You can download the first two fact sheets below.
Mandatory Referral Fact Sheet
Data Collection and Public Reporting Fact Sheet

Partnerships

Transplant Quebec, The Canadian Donation and Transplantation Research Program, The Transplantation Society, the Canadian Society of Transplantation, Canadian Blood Services, and the International Society for Organ Donation and Procurement are all official partners who have contributed to the scientific content and will partner with the distribution of the recommendations.