Genetics from Laboratory to Society: Societal Learning as an Alternative to Regulation PDF
Preview Genetics from Laboratory to Society: Societal Learning as an Alternative to Regulation
Genetics from Laboratory to Society Health, Technology and Society Series Editors: Andrew Webster, University of York, UKand Sally Wyatt, Royal Netherlands Academy of Arts and Sciences, The Netherlands Titles include: Andrew Webster (editor) NEW TECHNOLOGIES IN HEALTH CARE Challenge, Change and Innovation Gerard de Vries and Klasien Horstmann (editors) GENETICS FROM LABORATORY TO SOCIETY Societal Learning as an Alternative to Regulation Forthcoming titles include: John Abraham and Courtney Davis CHALLENGING PHARMACEUTICAL REGULATION Innovation and Public Health in Europe and the United States Alex Faulkner MEDICAL DEVICES AND HEALTHCARE INNOVATION Herbert Gottweis, Brian Salter and Catherine Waldby THE GLOBAL POLITICS OF HUMAN EMBRYONIC STEM CELL SCIENCE Jessica Mesman MEDICAL INOVATION AND UNCERTAINTY IN NEONATOLOGY Maggie Mort, Tracy Finch, Carl May and Frances Mair MOBILISING MEDICINE Information Technology and the Modernisation of Health Care Steven P. Wainwright and Clare Williams THE BODY, BIO-MEDICINE AND SOCIETY Reflections on High-Tech Medicine Health, Technology and Society Series Standing Order ISBN 978-1-4039-9131-7 Hardback (outside North America only) You can receive future titles in this series as they are published by placing a standing order. Please contact your bookseller or, in case of difficulty, write to us at the address below with your name and address, the title of the series and the ISBN quoted above. Customer Services Department, Macmillan Distribution Ltd, Houndmills, Basingstoke, Hampshire RG21 6XS, England Genetics from Laboratory to Society Societal Learning as an Alternative to Regulation Edited by Gerard de Vries University of Amsterdam Klasien Horstman Technical University Eindhoven, and University of Maastricht Selection and editorial matter © Gerard de Vries and Klasien Horstman 2008 Chapters © their authors 2008 Translation © Ton Brouwers 2008 Softcover reprint of the hardcover 1st edition 2008 978-0-230-00535-8 All rights reserved.No reproduction,copy or transmission of this publication may be made without written permission. No paragraph of this publication may be reproduced,copied or transmitted save with written permission or in accordance with the provisions of the Copyright,Designs and Patents Act 1988,or under the terms of any licence permitting limited copying issued by the Copyright Licensing Agency,90 Tottenham Court Road,London W1T 4LP. Any person who does any unauthorized act in relation to this publication may be liable to criminal prosecution and civil claims for damages. The authors have asserted their rights to be identified as the authors of this work in accordance with the Copyright,Designs and Patents Act 1988. First published in Dutch in 2004 by Aksant,Amsterdam as Genetica van laboratorium naar samenleving. De ongekende praktijk van voorspellende genetische testen. First published in English 2008 by PALGRAVE MACMILLAN Houndmills,Basingstoke,Hampshire RG21 6XS and 175 Fifth Avenue,New York,N.Y.10010 Companies and representatives throughout the world PALGRAVE MACMILLAN is the global academic imprint of the Palgrave Macmillan division of St.Martin’s Press,LLC and of Palgrave Macmillan Ltd.Macmillan® is a registered trademark in the United States,United Kingdom and other countries.Palgrave is a registered trademark in the European Union and other countries. ISBN 978-1-349-28208-1 ISBN 978-0-230-59877-5 (eBook) DOI 10.1057/9780230598775 This book is printed on paper suitable for recycling and made from fully managed and sustained forest sources.Logging,pulping and manufacturing processes are expected to conform to the environmental regulations of the country of origin. A catalogue record for this book is available from the British Library. A catalog record for this book is available from the Library of Congress. 10 9 8 7 6 5 4 3 2 1 17 16 15 14 13 12 11 10 09 08 Contents Abbreviations vii Preface x Notes on the Contributors xiii 1 The ‘Unknown’ Practice of Genetic Testing 1 Gerard de Vries 2 Constructing Results in Prenatal Diagnosis: Beyond Technological Testing and Moral Decision-Making 17 Myra van Zwieten 3 Genetic Diagnostics for Hereditary Breast Cancer: Displacement of Uncertainty and Responsibility 37 Marianne Boenink 4 Lifestyle, Genes and Cholesterol: New Struggles about Responsibility and Solidarity 64 Klasien Horstman 5 Detecting Familial Hypercholesterolaemia: Escaping the Family History? 90 Klasien Horstman and Carin Smand 6 Genetics and Insurance: New Technologies, New Policies, New Responsibilities 118 Ine van Hoyweghen 7 Work, Health and Genetics: Problems of Regulation in a Changing Society 138 Ruth Benschop and Gerard de Vries 8 Genetic Risks and Justice in the Workplace: The End of the Protection Paradigm? 155 Rein Vos v vi Contents 9 Learning from the Work that Links Laboratory to Society 171 Gerard de Vries and Klasien Horstman Notes 191 Bibliography 204 Author Index 215 Subject Index 219 Abbreviations ABI Association of British Insurers AMC Academic Medical Centre (Amsterdam) (Academisch Medisch Centrum Amsterdam) ARBO(WET) Dutch Occupational Health and Safety Act (Arbeidsomstandigheden Wet) BPV&W Grassroot Organization for Insurance and Labour (Breed Platvorm Verzekerden en Werk) BW Civil Law(Burgerlijk Wetboek) BRCA(1/2) Breast Cancer Gene CBO Dutch Institute for Health Care (Centraal Begeleidingsorgaan voor Intercollegiale Toetsing) COT Independant Advice, Inspection and Management for Building and Industry (Centrum voor Onderzoek en Technisch Advies) CF Cystic fybrosis (hereditary life threatening disease) CTE Chronic toxic encephalopathy (see OPS) CVZ Netherlands Health Care Insurance Board (College voor Zorgverzekeringen) CHZ Coronary Heart Disease DNA Deoxyribonucleic acid EHC Hereditary Hypercholesterolaemia Foundation (Stichting Erfelijke Hypercholesterolemie) FH Familial Hypercholesterolaemia FISH Fluorescente In Situ Hybridization FME-CWM Trade organization for the technological-industrial sector (Federatie Metaal- en Elektrotechnische Industrie – Contactgroep van Werkgevers in de Metaalindustrie) FNV Dutch Confederation of Trade Unions (Federatie Nederlandse Vakbeweging) FWO Research Foundation – Flanders (Belgium) HDL High-density lipoprotein (the ‘good’ cholesterol) HGAC Human Genetics Advisory Commission HRM Human resources management ICSI Intra cytoplasmic sperm injection i-FISH interface Fluorescente in situ hybridization IVF In-vitro fertilization vii viii Abbreviations JAMA Journal of the American Medical Association KNMG Royal Dutch Medical Association (Koninklijke Nederlandsche Maatschappij tot Bevordering der Geneeskunst ) KWF Dutch Cancer Society (Koningin Wilhelmina Fonds) LDL Low-density lipoprotein (‘bad cholesterol’) LPL Lipoprotein lipase (‘very bad cholesterol’) LVO Belgian Law on Insurance Contracts (Landverzekeringsovereenkomst) MAC Maximally Acceptable Concentration NHG Dutch College of General Practitioners (Nederlands Huisartsen Genootschap) NIGZ Netherlands Institute for Health Promotion and Disease Prevention (Nationaal Instituut voor Gezondheidsbevordering en Ziektepreventie) NIZW Dutch Institute for Care and Wellbeing (Nederlands Instituut voor Zorg en Welzijn) NTvG Dutch Journal of Medicine (Nederlands Tijdschrift voor Geneeskunde) NWO Netherlands Organization for Scientific Research (Nederlandse Organisatie voor Wetenschappelijk Onderzoek) OPS Organic Psycho-Syndrome (brain disease, often called ‘painters disease’ or ‘Scandinavian disease’; see CTE) OTA Office of Technology Assessment PKU Phenylketonuria (inherited metabolic disease) RMO Netherlands Council for Social Development (Raad voor Maatschappelijke Ontwikkeling) RNA Ribonucleic acid RSI Repetitive Strain Injury SER The Social and Economic Council of The Netherlands (Sociaal-Economische Raad) STG The Foundation for Future Health Scenarios (Stichting Toekomstscenario’s Gezondheidszorg) StOEH Hereditary Hypercholesterolaemia Detection Foundation (Stichting Opsporing Erfelijke Hypercholesterolemie) StOET Hereditary Cancer Detection Foundation (Stichting voor Opsporing Erfelijke Tumoren) TNO Dutch Organization for Technological Research and Innovation (Nederlandse Organisatie voor Toegepast Natuurwetenschappelijk Onderzoek) Abbreviations ix WBO Organization of Business and Industry Act (Wet op de Bedrijfsorganisatie) WGBO Dutch Law on Medical Treatment (Wet op de Geneeskundige Behandelingsovereenkomst) WHO World Health Organization WMK Dutch Medical Examination Act (Wet op de Medische Keuringen) ZON Netherlands Organization for Health Research and Development (Zorg Onderzoek Nederland)
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