Table Of ContentGenetics 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)
