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Challenging the Biomedical Monopolies of Knowledge Challenging the Biomedical Monopolies of Knowledge: A Case Study of PharmaWatch Kaye Buchholz B.A. Communication, Brock University THESIS SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF MASTER OF ARTS In the School of Communication O Kaye Buchholz 2005 SIMON FRASER UNIVERSITY Spring 2005 All rights reserved. This work may not be reproduced in whole or in part, by photocopy or other means, without permission of the author. APPROVAL NAME: Kaye Buchholz DEGREE: TITLE OF Challenging The Biomedical Monopolies Of Knowledge: THESIS: A Case Study Of Pharmawatch EXAMINING COMMITTEE: CHAIR: Prof. Alison Beale Prof. Gary McCarron Senior Supervisor, School of Communication, SFU Prof. Pat Howard Suprevisor, School of Communication, SFU Prof. Catherine Murray Examiner Associate Professor, School of Communication, SFU Date: i i SIMON FRASER UNIVERSITY PARTIAL COPYRIGHT LICENCE The author, whose copyright is declared on the title page of this work, has granted to Simon Fraser University the right to lend this thesis, project or extended essay to users of the Simon Fraser University Library, and to make partial or single copies only for such users or in response to a request from the library of any other university, or other educational institution, on its own behalf or for one of its users. The author has further granted permission to Simon Fraser University to keep or make a digital copy for use in its circulating collection. The author has further agreed that permission for multiple copying of this work for scholarly purposes may be granted by either the author or the Dean of Graduate Studies. It is understood that copying or publication of this work for financial gain shall not be allowed without the author's written permission. Permission for public performance, or limited permission for private scholarly use, of any multimedia materials forming part of this work, may have been granted by the author. This information may be found on the separately catalogued multimedia material and in the signed Partial Copyright Licence. The original Partial Copyright Licence attesting to these terms, and signed by this author, may be found in the original bound copy of this work, retained in the Simon Fraser University Archive. W. A. C. Bennett Library Simon Fraser University Burnaby, BC: Canada Simon Fraser University Ethics Approval The author, whose name appears on the title page of this work, has obtained human research ethics approval from the Simon Fraser University Office of Research Ethics for the research described in this work, or has conducted the research as a member of a project or course approved by the Ethics Office. A copy of the approval letter has been filed at the Theses Ofice of the University Library at the time of submission of this thesis or project. The original application for ethics approval and letter of approval is filed with the Office of Research Ethics. Inquiries may be directed to that Office. Bennett Library Simon Fraser University Bumaby, BC, Canada This thesis examines the emergence of pharmaceutical safety advocacy groups in contestation to biomedical knowledge monopolies. It questions: how can a pharmaceutical safety advocacy group influence change in a society dominated by biomedical monopolies of knowledge? To inform this question, historical ideas of monopolies of knowledge and expertise are discussed in their application to biomedical practices and the emergence of advocacy groups. A case study of the pharmaceutical safety advocacy group, PharrnaWatch is presented to explain why and how they, along with other advocacy groups employ epistemological and political strategies to resist the dominance of pharmaceutical knowledge systems. his thesis is dedicated to my mother. Thank you for your strength i~s~iratio~~. I offer my gratitude to the faculty, staff and my fellow students at the SFU School of Communication, who have played an integral role in encouraging my research path. I owe particular thanks to my senior advisor, Gary McCarron, whose support and wisdom throughout the process was invaluable. I thank Jane Thompson and Zena Sharman for their instrumental critiques. As well, thank you to Patricia Howard and Catherine Murray for their extended enthusiasm and engagement in the subject. Thank you to the board members of PharmaWatch, who encouraged my involvement with the organization and allowed this research to unfold. Special thanks to my love, Ian, whose support throughout this process was unbroken. TABLE OF CONTENTS Approval .......................................................................................................... ii ... Abstract .............................................................................................................. III Dedication .......................................................................................................... iv Acknowledgements ............................................................................................ v Table of Contents ........................................................................................... vi .. List of Abbreviations ........................................................................................ VII Chapter One: Introduction ................................................................................. 1 Chapter Two: Theoretical Overview ............................................................... 6 Breaking Down Monopolies of Knowledge ........................................................6 Monopolies of Knowledge and Expertise ..........................................................8 Biomedical Monopolies of Knowledge and Expertise ......................................11 The Emergence of Advocacy Groups.............................................................. 19 Conclusion ......................................................................................................25 Chapter Three: Research Methods ................................................................ 27 Phase One ......................................................................................................28 Phase Two ......................................................................................................30 Chapter Four: Findings and Discussion ........................................................ 36 Establishing an Identity Focused on Consumer Rights ...................................37 Converging with Technology ...........................................................................48 Competing with the Mainstream Media ........................................................... 54 Maintaining Autonomy without Being Co-opted ...............................................64 Chapter Summary ...........................................................................................79 Chapter Five: Conclusion ............................................................................. 81 In Summary .....................................................................................................85 Appendix: PharmaWatch Board Member Interview Questions ................... 89 Bibliography...................................................................................................... 90 Works Cited..................................................................................................... 90 Works Consulted .............................................................................................94 Websites Consulted ........................................................................................96 Recommended Readings on Pharmaceutical Safety ......................................97 LIST OF ABBREVIATIONS ADR - adverse drug reaction BCPWA - British Columbia People with Aids BCA - Breast Cancer Association CADRMP - Canadian Adverse Drug Reaction Monitoring Program CPS - Compendium of Pharmaceutical and Specialties CTS - charitable tax status DES - diethylstilbestrol HC - Health Canada OCAPl - Off ice of Consumer Affairs and Public Interest PW - PharmaWatch SDR - Society for Diabetic Rights SBD - Summary Basis of Decisions TPD - Therapeutic Products Directorate vii CHAPTER ONE: INTRODUCTION In the last decade, advocacy groups concerned with pharmaceutical safety have steadily emerged to challenge biomedical knowledge systems. Organizations such as the Canadian based PharmaWatch are sceptical of the great reliance and trust placed in the state, industry and medical authorities' information sources and decision-making processes. This biomedical knowledge structure is comparable to Harold Innis' critique of authorities capacity to hold iimonopolies of knowledge" (1950) - that is, a body of knowledge exclusively controlled by a select set of members of society. In relation to the multi-billion- dollar pharmaceutical industry, for instance, industry and the state are the controllers of knowledge and decision-making processes concerning the regulation and marketing of various drug products. Furthermore, these institutions produce and control the regulated pharmaceutical information distributed to the public. Increasingly however, data pointing to the questionable safety of various drugs and irrational pharmaceutical prescribing trends have emerged alongside consumers' personal stories of adverse reactions to pharmaceuticals. Yet, many unsafe pharmaceuticals remain on the market, some with sales that continue to soar. Consequently, consumers who have had dire pharmaceutical experiences have been motivated to form consumer-led organizations
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