INTERNATIONAL LIBRARY OF ETHICS, LAW, AND THE NEW MEDICINE

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1 GENETIC DEMOCRACY

2 INTERNATIONAL LIBRARY OF ETHICS, LAW, AND THE NEW MEDICINE Founding Editors DAVID C. THOMASMA DAVID N. WEISSTUB, Université de Montréal, Canada THOMASINE KIMBROUGH KUSHNER, University of California, Berkeley, U.S.A. Editor DAVID N. WEISSTUB, Université de Montréal, Canada Editorial Board TERRY CARNEY, University of Sydney, Australia MARCUS DÜWELL, Utrecht University, Utrecht, the Netherlands SØREN HOLM, University of Cardiff, Wales,United Kingdom GERRIT K. KIMSMA, Vrije Universiteit, Amsterdam, the Netherlands DAVID NOVAK, University of Toronto, Canada EDMUND D. PELLEGRINO, Georgetown University, Washington D.C., U.S.A. DOM RENZO PEGORARO, Fondazione Lanza and University of Padua, Italy DANIEL P. SULMASY, Saint Vincent Catholic Medical Centers, New York, U.S.A. LAWRENCE TANCREDI, New York University, New York, U.S.A. VOLUME 37 The titles published in this series are listed at the end of this volume.

3 Genetic Democracy Philosophical Perspectives Edited by VEIKKO LAUNIS Turku, Finland and JUHA RÄIKKÄ Turku, Finland

4 Editors Veikko Launis Turku Finland Juha Räikkä Turku Finland ISBN: e-isbn: Library of Congress Control Number: c 2008 Springer Science+Business Media B.V. No part of this work may be reproduced, stored in a retrieval system, or transmitted in any form or by any means, electronic, mechanical, photocopying, microfilming, recording or otherwise, without written permission from the Publisher, with the exception of any material supplied specifically for the purpose of being entered and executed on a computer system, for exclusive use by the purchaser of the work. Printed on acid-free paper springer.com

5 Acknowledgements The editors are deeply indebted to the writers and collaborators who participated the Genetic Democracy Authors Meeting held in Turku, Finland, in August The majority of the papers included were originally presented as part of this meeting. Originally, the ideas discussed in this volume grew out of the research project Genetic Democracy: Social and Ethical Implications of Genetically Modified Organisms, directed by Juha Räikkä and funded by the Academy of Finland ESGEMO Research Programme. Editorial work makes great demands on secretarial and other practical services. In practical matters, we have been enormously assisted by many of our colleagues in the Department of Philosophy at the University of Turku. Special thanks are due to Kirsi Rajala, Minna Soini and Susanne Uusitalo. Finally, we are grateful to the Academy of Finland and Turku University Foundation which provided us the financial support to arrange the Authors Meeting in Turku. v

6 Contents Contributors... ix Introduction: The Scope and Importance of Genetic Democracy... 1 Veikko Launis The Prerequisites for Genetic Democracy... 9 Helena Siipi Ethical Expertise in Democratic Societies Eerik Lagerspetz Towards Global Bioethics: The UNESCO Universal Declaration on Bioethics and Human Rights Henk ten Have Autonomy and Genetic Privacy Juha Räikkä Values, Rights and GMO: Against Radicalism Niklas Juth The Precautionary Principle and the Risks of Modern Agri-Biotechnology 75 Marko Ahteensuu Population Databanks and Democracy in Light of the Icelandic Experience 93 Vilhjálmur Árnason and Stefán Hjörleifsson Equality and Community in Public Deliberation: Genetic Democracy in Taiwan Terence Hua Tai and Wen-Tsong Chiou Genetic Resources, Genetic Democracy and Genetic Equity Keekok Lee Moral Constraints on Permissible Genetic Design Thomas Pogge vii

7 Contributors Marko Ahteensuu is a PhD Candidate in the Department of Philosophy at the University of Turku, Finland. He has worked in research projects on bioethics both in Finland and abroad. mataah@utu.fi Vilhjálmur Árnason is Professor of Philosophy in the Department of Philosophy and Centre for Ethics at the University of Iceland. vilhjarn@hi.is Wen-Tsong Chiou is Assistant Research Fellow in the Institutum Iurisprudentiae, Academia Sinica, Taiwan. wentsong@gate.sinica.edu.tw Henk ten Have is Director of the Division of Ethics of Science and Technology in Unesco, France. H.Tenhave@unesco.org Stefán Hjörleifsson is M.D. and Research Fellow in the Department of Public Health and Primary Health Care at the University of Bergen, Norway. stefan.hjorleifsson@isf.uib.no Niklas Juth is Doctor of Philosophy and Senior Lecturer in Medical Ethics at Karolinska Institutet, Sweden. niklas.juth@ki.se Eerik Lagerspetz is Professor of Practical Philosophy at the University of Turku, Finland. eerlag@utu.fi Veikko Launis is Professor of Medical Ethics at the University of Turku, Finland. vlaunis@utu.fi ix

8 x Contributors Keekok Lee presently holds an Honorary Research Fellowship in the School of Social Sciences, University of Manchester. Previously, she held an Honorary Chair in Environmental Philosophy at the University of Lancaster. Thomas Pogge is Professor of Political Science at the Columbia University, New York. Juha Räikkä is Lecturer in Practical Philosophy at the University of Turku, Finland. Dr. Helena Siipi is Assistant of Philosophy at the University of Turku, Finland. Terence Hua Tai is Professor and Chair in the Department of Philosophy at the National Chengchi University, Taiwan, and serves as Director of the Chengchi University Center for Science, Technology and Human Values.

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European Bioethics Training Camp Individualized Medicine and the Ethics of Access 18. 24. August 2014 Bad Honnef, Germany International and Interdisciplinary Conference for Students Online registration