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Negotiating Trust in the Canadian Blood System: Governance and the Politics of Public Accountability in the Wake of the Tainted Blood Scandal

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Negotiating Trust in the Canadian Blood System: Governance and the Politics of Public Accountability in the Wake of the Tainted Blood Scandal Negotiating Trust in the Canadian Blood System: Governance and the Politics of Public Accountability in the Wake of the Tainted Blood Scandal by JAY FIDDLER B.A. Carleton University, 1997 M.A. The University of British Columbia, 2004 A THESIS SUBMITTED IN PARTIAL FULFILLMENT OF THE REQUIREMENTS FOR THE DEGREE OF DOCTOR OF PHILOSOPHY in THE FACULTY OF GRADUATE STUDIES (Sociology) THE UNIVERSITY OF BRITISH COLUMBIA (Vancouver) May 2011 © Jay Fiddler, 2011 Abstract Blood and its derivatives are critical public health resources. Therefore, the ability to ensure a sufficient and safe supply of blood is a central role for governments and blood organizations. The challenges involved in ensuring this complex resource became evident following the contamination of blood supplies in the 1980s and 1990s with the Human Immunodeficiency Virus (HIV) and Hepatitis C (HCV). In Canada, this became known as the “tainted blood scandal”, with approximately 2000 people infected with HIV and more than 160,000 people infected with HCV through contaminated blood products. This crisis resulted in the loss of public trust in the Canadian blood system and in those responsible for its management. The public outcry led blood experts and governments to adopt more efficient ways of anticipating and managing emergent threats to blood safety by implementing the precautionary principle. These efforts also aimed to retain their legitimacy and rebuild public trust by integrating formal mechanisms of stakeholder engagement in risk governance. By using stakeholder engagement as a case study, this study focuses on the institutional processes of rebuilding trust in the Canadian blood system following the tainted blood scandal. The analysis describes competing ideas about trust, risk and responsibility in the blood system and traces the influence of stakeholders groups such as the hemophilia community and other blood consumer organizations. The findings suggest that stakeholder engagement primarily serves the interests of the blood operator by enhancing its reputation as a responsible manager of the blood system. It also diverts attention away from the role of the state in managing blood risk through expert systems ii and a policy of strict adherence to the precautionary principle. The analysis also demonstrates that stakeholder engagement can also serve as an alternative form of power and influence for hemophilia consumers. As victims of tainted blood, these consumers are able to play a unique role in endorsing blood safety and thus helping to rebuild reputation and public trust. However, because of this role they may also become an organizational risk if their interests are not reflected in blood policy. iii Preface Smith, AP, Matthews, R., Fiddler, J. (2011) Blood donation and community: Exploring the influence of social capital. International Journal of Social Inquiry. Vol:4 No:1 January 2011. This publication derived out of a study entitled “The Social Determinants of Blood Donation: Examining the Role of Social Capital, Ethnicity, and Trust.” Parts of this publication, particularly the historical context of the blood system, appear in Chapter 2 were written by me. The study was conducted over four different research sites (Surrey, Vancouver, Richmond and Kelowna), each with a Canadian Blood Services blood donor clinic. I did interviews with 42 participants (out of 103) and approximately 25 hours of participant observation in two different sites (Kelowna and Vancouver). Along with the other co-investigators, I helped to establish the data analysis codes derived from interview data, document data and participant observation and then analyze the data for write up. UBC Behavioural Research Ethics Board certificates #B04-0554 (for the ‘Sponsored Agency of the Canadian Institutes of Health Research) and certificate #04- 0024 (for the Bayer Blood Partnership Fund). Smith, A.P. and J. Fiddler. (2009). Making the Gift of Life Safer: The Canadian Tainted Blood Scandal. (pp. 491-505). In Health, Illness and Health Care in Canada. 4th edition. B. S. Bolaria and H.D. Dickinson (Eds.). This book chapter provides an overview of the tainted blood scandal and its regulatory consequences. My contribution centers around the sections outlining the history of the Canadian tainted blood scandal and the procedures and policies subsequently put in place to manage blood risk. I also contributed to the theoretical framework, which is outlined in the section titled “Blood and the Risk Society.” Material for this chapter comes from Chapters 2 and 3 of my dissertation. The data derives from a review of the existing literature, not from interview data. iv Table of Contents Abstract ............................................................................................................................... ii Preface ................................................................................................................................ iv Table of Contents ................................................................................................................ v List of Tables ...................................................................................................................... ix List of Figures ..................................................................................................................... x Acknowledgements ............................................................................................................ xi Chapter One: Governing Risks and Trust through Stakeholder Participation ........... 1 Chapter Two: Setting the Stage: Responding to Tainted Blood and Public Distrust .............................................................................................................................. 10 A Historical Overview of Blood Contaminations in North America .............................. 11 Emergence of Acquired Immunodeficiency Syndrome (AIDS) ................................. 11 Emergence of Hepatitis C (HCV) ............................................................................... 14 The Krever Inquiry: Recommendations for a New Canadian Blood System ................. 15 Blood Consumers: The Hemophilia Population in Canada ........................................ 19 The Current Canadian Blood System: Two New Blood Operators ............................ 20 Rethinking Blood Safety: Governing Risks, Public Accountability and Trust ........... 22 Public Accountability and Precaution .............................................................. 25 Gaps in the Literature .................................................................................................. 28 Overview of the Dissertation ...................................................................................... 30 Chapter Three: Theorizing Stakeholder Participation in Risk Governance .............. 33 Conceptualizing Blood Risks in the Risk Society .......................................................... 34 Access Points and Trust Building ............................................................................... 37 Governmentality and the Stakeholder Society ................................................................ 40 A Governmentality Perspective on Governing ........................................................... 41 Public Participation as a Strategy of Government ...................................................... 43 Risk as a Strategy of Government ............................................................................... 45 v Governmentality and the Blood System ..................................................................... 46 Risk, Culture and Moral Responsibility .......................................................................... 49 Summary and Conclusions .............................................................................................. 54 Chapter Four: Methodology and Context: The How, the What and the Who ........... 57 The How: Research Methods .......................................................................................... 57 Interview Participants: Description of Sampling Frame ................................................. 58 Expert Advisory Committee on Blood Regulation (EAC-BR) ................................... 61 Canadian Blood Services (CBS) ................................................................................. 64 Interview Protocol ........................................................................................................... 67 Document Collection ...................................................................................................... 70 Data Analysis .................................................................................................................. 73 Summary and Conclusions .............................................................................................. 77 Chapter Five: Public Participation in Regulatory Risk Governance: Representatives of Governmental Responsibility for Blood Safety ............................. 79 Situating the EAC-BR in the Regulatory Environment: Tainted Blood and the Krever Inquiry ................................................................................................................. 83 Creating a New Regulatory Environment ................................................................... 84 Redefining Risk and Responsibility in the Canadian Blood System .............................. 86 Conceptualizing Risks and Responsibilities ..............................................................
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