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10Th Global Summit of National Ethics/Bioethics Committees: Finding Paths Through the World First Edition 2015

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10Th Global Summit of National Ethics/Bioethics Committees: Finding Paths Through the World First Edition 2015 F / 10th Global Summit of National Ethics/Bioethics Committees: Finding Paths Through the World First edition 2015 2015 Comisión Nacional de Bioética/Secretaría de Salud Calzada Arenal No. 134, col. Arenal Tepepan, C.P. 14610, Deleg. Tlalpan, México, D.F. Phone: +52 55 54872760 http://conbioetica-mexico.salud.gob.mx ISBN: 978-607-460-472-6 Edited by: Manuel Hugo Ruiz de Chávez Guerrero Raúl Jiménez Piña Proofreading coordinator: José Manuel Lozoya Pacheco Proofreading: Aidée Orozco Pérez, América Nelly Pérez Manjarrez, Ángeles Marina Adame Gayoso, Edén González Roldán, Gabriela Pineda Hernández, Gustavo Oláiz Barragán, Karla Gabriela Sánchez Villanueva, Mario Patricio Silva Schütte, Marisa Valdés Fernández, Miguel Ángel Morales Gutiérrez, Sandra Lizbeth Carrizosa Guzmán. Design: Editarte Printed and made in Mexico Editor’s note: The views expressed on this publication are those of the authors and do not necessarily reflect the point of view of the National Bioethics Commission of Mexico. All images and pictures were taken from the authors’ presentations. It was considered best to keep the original sense of the lectures. Consequently, these are published in the language they were delivered, which is also why some of them appear in English, Spanish or French, and only a style review was made -barely correcting slip-ups in the spoken discourse. CONTENT Presentation ...........................................................................................11 Foreword ..................................................................................................13 Acknowledgments ..............................................................................15 Preface ...................................................................................................... 17 Opening session ................................................................................... 21 • Manuel H Ruiz de Chávez, President of the 10th Global Summit of National Ethics/Bioethics Committees .............................................................. 21 • Issac Morales Tenorio, Secretary of Foreign Affairs representative .................................... 25 • Maureen Birmingham Panamerican/World Health Organization representative ..........27 Inauguration ceremony ....................................................................31 Key note speeches ........................................................................... 33 • The 9th Global Summit of National Ethics Committees. Review and discussion ........................................................................... 33 • Evolution and prospects of the National Bioethics Commission of Mexico ......................................................................... 36 • Introduction to the 10th Global Summit: Outline and expectations ..................................................................................... 41 Session 1: National Bioethics Committees: profile, role and function .................................................................51 • Presentation .............................................................................................. 51 • Introduction .............................................................................................. 52 • necs questionnaire: overview and presentation ............................ 55 • L’indépendance la cne, indispensable dans une démocratie directe ................................................................ 61 • Gaps between ethical deliberation and reality .............................. 65 • The role of international organizations ........................................... 73 Session 2: Emerging Health Technologies .............................79 • Presentation ............................................................................................. 79 • Introduction ............................................................................................... 81 • Ethics of new and emerging health technology ............................ 83 • Assessment of new health technologies ........................................ 87 • Ethical issues in information and communication technology for health ............................................................................. 91 • La télésanté clinique au Québec: un regard éthique .................... 97 • Novel neurotechnologies: intervening in the brain .......................101 • Regenerative Medicine using pluri-potential stem cells ............107 Session 3: Universal Health Coverage (uhc) .......................113 • Presentation .............................................................................................113 • Introduction ............................................................................................. 114 • Ethical priority-setting for a progressive realization of universal health coverage/Making fair choices on the path to universal health coverage ........................................116 • Challenges in the system of social protection in health ........... 124 • Institucionalización de la salud ..........................................................127 • Universalidad: Responsabilidad del Estado ....................................132 • The Paradox of Sri Lanka’s Health Achievements ...................... 134 • Good quality well accessed medical care: dream or ethical imperative ................................................................138 • Co-payment: a challenge to priority-setting and universal health coverage? A Swedish nec perspective ............................... 141 Session 4: Research involving Vulnerable populations with focus on children ....................................................................145 • Presentation ........................................................................................... 145 • Introduction ............................................................................................ 147 • On the concept of vulnerability in research ...................................150 • Towards an ethical framework for the involvement of children in research .......................................................................... 154 • Informed Consent in Research Involving Children with Cancer ..............................................................................160 • Safeguarding Children: Pediatric Medical Countermeasure Research ................................................ 164 Bioethics on the Global Level: Issues and Challenges . .................................................................. 173 Role and Function of Steering Committee: Future Summits .............................................. 187 • Next Venue .............................................................................................209 Clossing remarks ................................................................... 215 Market Place Sessions ......................................................... 217 conbioética-Mexico travel grant ...................................... 221 List of participants ............................................................... 224 Contributors .......................................................................... 235 F PRESENTATION Mexico is honored and proud for the great success of the th Global Summit of National Ethics/Bioethics Committees, which gathered representatives from more than one hundred countries from around the globe to foster open dialogue, mutual learning and exchange information about specic and priority aspects of bioethics issues, both for our country as well as the group of nations who participated. This productive meeting, held with great enthusiasm and expectation, laid the ground work for discussing and analyzing national and global public policy on ethics in health. The Summit was meant not only as an opportunity for Mexico to highlight its efforts in bioethics, but as a way of consolidating Mexico’s leadership in the Americas, a key aim of the National Bioethics Commission’s work in recent years. It was an ideal platform for all of the Americas to become aware of the wide-ranging and complex projects, work and advances that have been carried out in this eld. The issue is of utmost importance for our government, as the President of the Republic, Enrique Peña Nieto, has made a call to build a society of rights, within the framework of a more egalitarian and inclusive Mexico. This has, on one hand, strengthened the National Bioethics Commission, and, on the other, promoted the creation of bioethics committees in each of the states. The stage and the areas of opportunity for advancing a bioethical culture in our country, thus, are favorable for the promotion of projects and programs aimed at developing knowledge in the eld, such as the organization of this great event. / The realization of the th Global Summit of National Ethics/ Bioethics Committees is a reection of the commitment of our nation to the best causes of Humanity. I would like to thank all participants for their valuable contributions and for making this such a memorable occasion. • Mercedes Juan Secretary of Health, Mexico F FOREWORD The Global Summit of National Ethics/Bioethics Committees (), held once in every two years, brings together National Ethics Committees, i.e., bodies with a recognised national role in providing bioethics advice or decision regardless of their names, such as Ethics/ Bioethics Committees/ Commissions/ Advisory Bodies, from around the world to share their thoughts and experiences
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