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welfare care & care & care & welfare Ine Van Hoyweghen is a postdoctoral research fellow welfare at the University of Maastricht. Ine Van Hoyweghen Risks in the Making In recent decades, insurance companies, scientists and the public have debated the potential use of genetic testing in the insurance industry. With Risks in the Making, Ine Van Hoyweghen alters the terms of the debate, moving it from abstract, theoretical grounds to the question of how insurance companies actually work. Through an empirical Risks in the Making ethnographic study of life insurance, Van Hoyweghen reveals fascinating Travels in Life Insurance and Genetics and important details about insurance practices and risk management, underscoring the diversity of insurance markets, underwriting practices Van Hoyweghen and strategies. By doing so, this book opens up an important examination of today’s risk selection procedures in the insurance industry for not only those directly connected to the field, but a wider audience who may be interested in understanding how the impact of developments in the life sciences in today’s core institutional practices can be interrogated through sociological inquiry. ISBN-13 978 90 5356 927 6 ISBN-10 90 5356 927 8 www.aup.nl A U P A U P Risks in the Making CARE & WELFARE Care and welfare are changing rapidly in contemporary welfare states. The Care & Welfare series publishes studies on changing relationships between citizens and professionals, on care and welfare governance, on identity politics in the context of these welfare state transformations, and on ethical topics. It will inspire the international academic and political debate by developing and reflecting upon theories of (health) care and welfare through detailed national case studies and/or international com- parisons. This series will offer new insights into the interdisciplinary theory of care and welfare and its practices. series editors Jan Willem Duyvendak, University of Amsterdam Trudie Knijn, Utrecht University Monique Kremer, Netherlands Scientific Council for Government Policy (Wetenschappelijke Raad voor het Regeringsbeleid – WRR) Margo Trappenburg, Utrecht University, Erasmus University Rotterdam previously published Jan Willem Duyvendak, Trudie Knijn and Monique Kremer (eds.), Policy, People, and the New Professional. De-professionalisation and Re-profession- alisation in Care and Welfare, 2006 (ISBN 978 90 5356 885 9) Risks in the Making Travels in Life Insurance and Genetics Ine Van Hoyweghen Cover design: Sabine Mannel, NEON Design, Amsterdam Layout: JAPES, Amsterdam ISBN-13 978 90 5356 927 6 ISBN-10 90 5356 927 8 NUR 741 / 756 © Amsterdam University Press, Amsterdam 2007 All rights reserved. Without limiting the rights under copyright reserved above, no part of this book may be reproduced, stored in or introduced into a retrieval system, or transmitted, in any form or by any means (electronic, mechanical, photocopying, recording or otherwise) without the written permission of both the copyright owner and the author of the book. Contents Preface 7 I Risky Business: The Collision of Genetics and Life Insurance 9 Genetics and Society 9 Reconstructing Risky Business 15 Risky Travels 22 Making Risk, Enacting the Social 24 II “Genetics Is Not the Issue”: Insurers on Genetics and Life Insurance 27 Introduction 27 A Public Relations Problem 27 From Playing Defence to a Proactive Approach 33 The Politics of Waiting 41 Conclusion 44 III Risky Bodies Stage 1: Constituting the Underwriting Practice 49 Introduction 49 The Non-Medical Appetiser of the Table 50 Positioning the Product: The Medical Questionnaire 56 Conclusion 64 IV Risky Bodies Stage 2: Governing by Numbers 67 Introduction 67 Categorising Risky Bodies 72 Measuring Risky Bodies 84 Conclusion 93 V Risky Bodies Stage 3: The Art of Underwriting 97 Introduction 97 The Relevance of Judgement 98 The Manoeuvrability of the Final Risk Appraisal 105 At the End of the Day 113 Conclusion 116 VI Risky Bodies Future Stage? Risk Carriers and Risk Takers 119 Introduction 119 Lifestyle as Predictive Health Information 121 The Involuntary Character of Genetic Risks 131 Risk Carriers vs. Risk Takers 133 Side Effects of a Genetic Essentialism 134 Conclusion 136 5 VII Towards Experimental Learning 141 Learning by Travelling 141 The Organisation of Voice to Stimulate Learning Processes 141 Risk Taking as Experimental Learning with Genetics 154 Glossary 161 Notes 165 Bibliography 177 Index 193 6 contents Preface Everybody's a mad scientist, and life is their lab. We're all trying to experiment to find a way to live, to solve problems, to fend off madness and chaos. David Cronenberg AIDS, gene crops, BSE, stem cells… In an uncertain society like ours we can never demand too much from science to provide conclusive solu- tions to these issues. Faced with prevailing uncertainties, we need fresh policy perspectives. This book reports on a journey through one of these current issues: the use of genetic testing in insurance. In an effort to find new openings, the book explores this from an empirical sociological angle – by studying the insurance industry from the inside. It explores medical underwriting practices and how insurers make insurance risks. I highlight the many experiments, oscillations and balancing acts in- surers face in order to arrive at “proper” insurability rates, as a matter of trial and error. My own methodological approach also capitalises on this experimental character and, as such, the travel metaphor has been used throughout the book. By identifying insurance risk selection as assem- blage work, the book creates spaces for negotiation on the insurability of people. From there, I make an appeal for “risk taking” in insurance in dealing with the uncertainties of genetics. Such “risk taking” might take the form of an experimental learning policy during the process of risk making. The book provides empirical arguments for this new policy per- spective. It is an edited version of my Ph.D. thesis, which was defended at the Catholic University of Leuven (Belgium) in 2004. Many people supported me during this trip. Special thanks are first and foremost to my thesis advisors, Rita Schepers and Klasien Horst- man. They provided the essential moral and intellectual support, lis- tened patiently to my doubts and enthusiasms and helped whenever I momentarily lost track. Many friends and colleagues offered invaluable advice and support over the years. First, I would like to mention my co- travellers of the Department of Sociology at the Catholic University of Leuven: Lesley Hustinx, Anja Declercq, Hans Neefs, Yota Mokos, Jaak Billiet and many others. The NWO-club – Gerard de Vries, Klasien Horstman, Rein Vos, Dick Willems, Ruth Benschop, Marianne Boenink and Myra van Zwieten – offered the kind of learning, disturbing discus- sions and new insights I sometimes desperately needed. My stay at the SATSU in York was equally stimulating in many respects. I gratefully acknowledge Andrew Webster for acting as my local supervisor there. Special mention goes to Femke Merkx. I greatly benefited from discus- sions about our insurance people. Also thanks to my co-experimenters in 7 the “Ethnography of Genomics” group at the University of Maastricht. It always feels great to return home and reminisce about our travels in genomics world. I am especially grateful to all those I met in the world of insurance. I owe much to many people there, for guiding me through the insurance landscape and for co-exploring it and sharing their valu- able insights. My sincere thanks to all the underwriters, medical advi- sors, actuaries, managers and board members for their cooperation. Furthermore, I could not have even started this journey without the Scientific Fund of Flanders (FWO), which created the financial condi- tions that helped launch me out into this world. Financial support to publish the book was provided by a number of organisations. Substantial funding was awarded through a grant from the Brocher Foundation (www.brocher.ch). I also received generous support from the Dutch As- sociation of Insurers. This book also received a grant from the Nether- lands Organisation for Scientific Research (NWO). I am deeply indebted to all of these organisations for making publication possible. I am grate- ful to Ton Brouwers who edited the text and improved the original. Most of all, I am grateful to my family, for being the cornerstone of this entire journey. My final and enormous thanks are to them. Ine Van Hoyweghen Maastricht, September 2006 8 preface I Risky Business: The Collision of Genetics and Life Insurance Genetics and Society Genome mapping, genetic testing, DNA banks, reproductive technolo- gies, pharmacogenetics – all of these reflect scientific breakthroughs and new opportunities in medicine that are both fascinating and disturb- ing. Over the past decade, the potential of genetics to help us understand and control health and disease in radically new ways has been widely discussed. Some observers view these spectacular advances as part of a larger process they refer to as “Genetic Revolution”. Others raise ques- tions as to its ethical, legal and social repercussions, suggesting that this genetic turn will lead to the creation of a genetic underclass. The fear of genetic discrimination continues to be exacerbated by on- going developments in genetic research. The Human Genome Project (HGP), a $1.9 billion global program to map and sequence all human genes, has been hailed as spurring a new golden age of medicine, nota- bly with respect to the prevention, diagnosis and treatment of many ma- jor diseases. This molecular genetics, or “new genetics”, allows us to understand which genes contribute to which diseases. Scientists say that currently there are about four thousand, generally rare diseases – like Huntington's disease, cystic fibrosis, and Duchenne muscular dys- trophy – with so-called genetic markers that can identify people who are at risk of contracting them. Prominent genetic researchers, such as Francis Collins, anticipate that it will soon be possible to test for a variety of susceptibility genes and consider appropriate prevention strategies.