Negotiating bioethics : the governance of UNESCO's Bioethics Programme

2013·1.5 MB·English

by  Langlois, Adèle

Negotiating Bioethics
The sequencing of the entire human genome has opened up unprecedented possibilities for
healthcare, but also ethical and social dilemmas about how these can be achieved,
particularly in developing countries. UNESCO’s Bioethics Programme was established to
address such issues in 1993. Since then, it has adopted three declarations on human genetics
and bioethics (1997, 2003 and 2005), set up numerous training programmes around the
world and debated the need for an international convention on human reproductive cloning.
Negotiating Bioethics presents Langlois’ research on the negotiation and implementation
of the three declarations and the human cloning debate, based on fi eldwork carried out in
Kenya, South Africa, France and the UK, among policy-makers, geneticists, ethicists, civil
society representatives and industry professionals. The book examines whether the
UNESCO Bioethics Programme is an effective forum for (a) decision-making on bioethics
issues and (b) ensuring ethical practice. Considering two different aspects of the UNESCO
Bioethics Programme – deliberation and implementation – at international and national
levels, Langlois explores:
• how relations between developed and developing countries can be made more equal;
• who should be involved in global level decision-making and how this should proceed;
• how overlap between initiatives can be avoided;
• what can be done to improve the implementation of international norms by sovereign
states;
• how far universal norms can be contextualized;
• what impact the effi cacy of national level governance has at international level.
Drawing on extensive empirical research, Negotiating Bioethics presents a truly global
perspective on bioethics. The book will be of interest to students and scholars of sociology,
politics, science and technology studies, bioethics, anthropology, international relations
and public health.
Adèle Langlois is Senior Lecturer in Politics and International Relations at the University
of Lincoln. She has conducted fi eldwork in India, Kenya and South Africa. Her research
interests include the regulation of human genetic and biomedical research, polio eradication
and normative theories of global governance.
Genetics and Society
Series Editors: Ruth Chadwick, Director of Cesagen, Cardiff University, John
Dupré, Director of Egenis, Exeter University, David Wield, Director of Innogen,
Edinburgh University and Steve Yearley, Director of the Genomics Forum,
Edinburgh University.
The books in this series, all based on original research, explore the social,
economic and ethical consequences of the new genetic sciences. The series is
based in the Cesagen, one of the centres forming the ESRC’s Genomics Network
(EGN), the largest UK investment in social-science research on the implications
of these innovations. With a mix of research monographs, edited collections,
textbooks and a major new handbook, the series is a valuable contribution to the
social analysis of developing and emergent bio-technologies.
Series titles include:
New Genetics, New Social Formations Handbook of Genetics and
Peter Glasner, Paul Atkinson and Society
Helen Greenslade Paul Atkinson, Peter Glasner and
Margaret Lock
New Genetics, New Identities
Paul Atkinson, Peter Glasner and The Human Genome
Helen Greenslade Chamundeeswari Kuppuswamy
The GM Debate Community Genetics and
Risk, politics and public engagement Genetic Alliances
Tom Horlick-Jones, John Walls, Gene Eugenics, carrier testing and
Rowe, Nick Pidgeon, Wouter Poortinga, networks of risk
Graham Murdock and Tim O’Riordan Aviad E. Raz
Growth Cultures Neurogenetic Diagnoses
Life sciences and economic development The power of hope and
Philip Cooke the limits of today’s medicine
Carole Browner and
Human Cloning in the Media H. Mabel Preloran
Joan Haran, Jenny Kitzinger,
Maureen McNeil and Kate O’Riordan Debating Human Genetics
Contemporary issues in public policy
Local Cells, Global Science and ethics
Embryonic stem cell research in India Alexandra Plows
Aditya Bharadwaj and Peter Glasner
Genetically Modifi ed Crops on Trial Gender and Genetics
Opening up alternative futures of Sociology of the prenatal
Euro-agriculture Kate Reed
Les Levidow
Risky Genes
Creating Conditions Genetics, breast cancer and
The making and remaking of a Jewish identity
genetic condition Jessica Mozersky
Katie Featherstone and Paul Atkinson
The Gene, the Clinic and
Genetic Testing the Family
Accounts of autonomy, responsibility Diagnosing dysmorphology, reviving
and blame medical dominance
Michael Arribas-Allyon, Srikant Joanna Latimer
Sarangi and Angus Clarke
Barcoding Nature
Regulating Next Generation Shifting cultures of taxonomy in an
Agri-Food Biotechnologies age of biodiversity loss
Lessons from European, North Claire Waterton, Rebecca Ellis and
American and Asian experiences Brian Wynne
Edited by Michael Howlett and
David Laycock Negotiating Bioethics
The governance of UNESCO’s
Regenerating Bodies Bioethics Programme
Tissue and cell therapies in the Adèle Langlois
twenty-fi rst century
Julie Kent
Forthcoming titles include:
Scientifi c, Clinical and Commercial
Development of the Stem Cell
From radiobiology to
regenerative medicine
Alison Kraft
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Negotiating Bioethics
The governance of UNESCO’s
Bioethics Programme
Adèle Langlois
First published 2013
by Routledge
2 Park Square, Milton Park, Abingdon, Oxon OX14 4RN
Simultaneously published in the USA and Canada
by Routledge
711 Third Avenue, New York, NY 10017
Routledge is an imprint of the Taylor & Francis Group, an informa
business
© 2013 Adèle Langlois
The right of Adèle Langlois to be identifi ed as author of this work has
been asserted by her in accordance with sections 77 and 78 of the
Copyright, Designs and Patents Act 1988.
All rights reserved. No part of this book may be reprinted or reproduced or
utilised in any form or by any electronic, mechanical, or other means,
now known or hereafter invented, including photocopying and recording,
or in any information storage or retrieval system, without permission in
writing from the publishers.
Trademark notice: Product or corporate names may be trademarks or
registered trademarks, and are used only for identifi cation and explanation
without intent to infringe.
British Library Cataloguing in Publication Data
A catalogue record for this book is available from the British Library
Library of Congress Cataloging in Publication Data
Langlois, Adèle.
Negotiating bioethics : the governance of UNESCO’s Bioethics
Programme / Adèle Langlois.
pages cm. — (Genetics and society)
Includes bibliographical references and index.
1. Unesco’s Bioethics Programme. 2. Bioethics—International
cooperation. 3. Medical ethics—International cooperation.
4. Medical genetics—Law and legislation—International
cooperation. I. Title.
R724.L264 2013
174.2—dc23 2013003325
ISBN: 978-0-415-53346-1 (hbk)
ISBN: 978-0-203-10179-7 (ebk)
Typeset in Times New Roman
by Refi neCatch Limited, Bungay, Suffolk

A PDF version of this book is available for free in Open Access at
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For Mum and Dad
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Contents
List of tables xi
Foreword xii
Acknowledgements xiv
Abbreviations xvi
1 Introduction 1
2 Bioethics: human genetic and biomedical research
ethics at UNESCO and beyond 5
Bioethics 5
Genetics and genomics 9
The UNESCO Bioethics Programme 14
UNESCO and human cloning 19
3 Global governance: a conceptual framework for
analysing bioethics at UNESCO 29
Global governance 30
The deliberative process: representation, legitimacy
and accountability 34
The implementation process: realizing and enforcing norms 37
Application to the UNESCO Bioethics Programme 42
4 Deliberating bioethics: UNESCO’s standard-setting activities 45
The infrastructure of the UNESCO Bioethics Programme 45
Drafting and negotiating the declarations 47
The human cloning debate 57