Working Groups


Chapter 1 – Baseline Ethical Principles

Lead: Dr. Dale Gardiner, NHS Blood and Transplant, London, United Kingdom
Authorship Committee and Content

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.

Chapter 2 – Legal Foundations

Lead: Prof. Maeghan Toews, University of Adelaide, Adelaide, Australia
Authorship Committee and Content

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

Scope and Core Themes:

  • Public trust
  • Equity & fairness & justice
  • Individual autonomy
  • Respect for Human Rights
  • Improve population health/wellbeing through donation and transplantation

Chapter 3 – Donation System Architecture

Leads: Mr. Howard Nathan, Gift of Life Donor Program, Philadelphia, United States and Ms. Susan Gunderson, LifeSource, Minneapolis, United States, and Ms. Claire Williment, NHS Blood and Transplant, London, United Kingdom
Authorship Committee and Content

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 legislation. 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

Chapter 4 – Consent Model and Emerging Legal Issues

Lead: Mr. Phil Walton, NHS Blood and Transplant, London, United Kingdom
Authorship Committee and Content

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, Brasil
  • 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.

Chapter 5 – Living Donation

Lead: Dr. Elmi Muller, University of Cape Town, Cape Town, South Africa
Authorship Committee and Content

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 R. Pâquet, 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

Content:

  • 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.

Chapter 6 – Tissue Donation

Lead: Dr. Jacinto Sanchez Ibañez, Galician Health Services, A Coruna University Hospital, Coruna, Spain
Authorship Committee and Content

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-forprofit setting

Chapter 7 – Research and Innovation in OTDT and Emerging Issues

Lead: Dr. Mélanie Dieudé, Executive Director, The Canadian Donation and Transplantation Research Program (CDTRP), Université de Montréal, Montreal, Canada
Authorship Committee and Content

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. Wenshi Jiang, Society of Organ & Tissue Donation China Association for Promotion of Health Science and Technology and Shanxi Provincial Organ Procurement and Allocation Center, People's Republic of China
  • Dr. Nicholas Murphy, Department of Philosphy and Medicine, University of Western Ontario, CDTRP Training Program, London, Canada
  • Dr. Gabriel Oniscu, Edinburgh Transplant Centre & University of Edinburgh, Edinburgh, United Kingdom
  • Ms. Karen Rockell, UK Organ Donation & Transplantation Research Network Patient, United Kingdom

Scope and Core Themes:

  • Research Consent
  • Data Management: including data collection, storage, and sharing
  • Research ethical standards
  • Patient partnerships in research

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