Public Health in the Age of Anxiety: Religious and Cultural Roots of Vaccine Hesitancy in Canada 9781487510404

Table of contents :
Contents
Acknowledgments
Introduction and theory
Introduction: Seeking a Better Conversation
1. Crises of Trust and Truth: Religion, Culture, and Vaccine Hesitancy in Canada
2. Vaccine Hesitancy: Ethical Considerations from Multiple Perspectives
3. The Role of Risk Perception in Vaccine Hesitancy and the Challenge of Communication
History
4. Learning from Smallpox Inoculation Refusal: Early Scientific Debates and the Evolution of Vaccine Refusal
5. Not without Risk: The Complex History of Vaccine Resistance in Central Canada, 1885–1960
Biomedicine, The State, And Vaccine-Hesitant/ Rejecting Communities
6. A Portrait Of Vaccine-Hesitant Canadians
7. Vaccine Hesitancy And The Use Of Complementary And Alternative Medicine
8. Epidemiologic Trends In Vaccine-Preventable Diseases And Immunization In Canada
9. Canada’S Vaccine Safety System
Vaccine Politics In Clinical, Media, And Community Settings
10. “It’S Your Body, Your Decision”: An Anthropological Exploration Of Hpv Vaccine Hesitancy
11. Approaching Vaccine-Hesitant Parents: A Clinician’S Perspective
12. The Roots Of Vaccine Hesitancy
13. Public Health And Personal Heuristics
Conclusion
14. Continuing The Conversation
Appendix
Contributors
Index

Citation preview

PUBLIC HEALTH IN THE AGE OF ANXIETY Religious and Cultural Roots of Vaccine Hesitancy in Canada Edited by Paul Bramadat, Maryse Guay, Julie A. Bettinger, and Réal Roy

Controversies and scepticism surrounding vaccinations, though not new, have increasingly come to the fore as more individuals decide not to inoculate themselves or their children for cultural, religious, or other reasons. Their personal decisions put the rights of the individual on a collision course with public and community safety. Public Health in the Age of Anxiety enhances both the public and scholarly understanding of the motivations behind vaccine hesitancy in Canada. The volume brings into conversation people working within such fields as philosophy, medicine, epidemiology, history, nursing, anthropology, public policy, and religious studies. The contributors critically analyse issues surrounding vaccine safety, the arguments against vaccines, the scale of anti-vaccination sentiment, public dissemination of medical research, and the effect of private beliefs on individual decision-making and public health. These essays model and encourage the type of productive engagement that is necessary to clarify the value of vaccines and reduce the tension between pro- and anti-vaccination groups. paul bramadat is a professor and director of the Centre for Studies in Religion and Society at the University of Victoria. His previous works include Religious Radicalization in Canada and Beyond and Christianity and Ethnicity in Canada, both published by University of Toronto Press. maryse guay is a professor in the Faculty of Medicine and Health Sciences at the Université de Sherbrooke. julie a. bettinger is an associate professor in the Department of Pediatrics and a vaccine safety scientist at the Vaccine Evaluation Center at the University of British Columbia. réal roy is an assistant professor in the Department of Biology at the University of Victoria.

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PUBLIC HEALTH IN THE

AGE OF ANXIETY Religious and Cultural Roots of Vaccine Hesitancy in Canada EDITED BY PAUL BRAMADAT, MARYSE GUAY, JULIE A. BETTINGER, AND RÉAL ROY

UNIVERSITY OF TORONTO PRESS Toronto Buffalo London

©  University of Toronto Press 2017 Toronto Buffalo London www.utppublishing.com Printed in the U.S.A. ISBN 978-1-4875-0020-7 (cloth)   ISBN 978-1-4875-2012-0 (paper) Printed on acid-free, 100% post-consumer recycled paper with vegetable-based inks. ________________________________________________________________ Library and Archives Canada Cataloguing in Publication Public health in the age of anxiety: religious and cultural roots of vaccine hesitancy in Canada / edited by Paul Bramadat, Maryse Guay, Julie A. Bettinger, and Réal Roy. Includes bibliographical references and index. ISBN 978-1-4875-0020-7 (cloth). ISBN 978-1-4875-2012-0 (paper) 1. Vaccination – Canada. 2. Vaccination of children – Canada. 3. Vaccines – Canada. I. Bramadat, Paul, 1967–, editor II. Guay, Maryse, 1957–, editor III. Bettinger, Julie A., editor IV. Roy, Réal, editor RJ240.P83 2017 614.4'7083 C2017-901372-6 ________________________________________________________________ This book has been published with the help of a grant from the Federation for the Humanities and Social Sciences, through the Awards to Scholarly Publications Program, using funds provided by the Social Sciences and Humanities Research Council of Canada. University of Toronto Press acknowledges the financial assistance to its publishing program of the Canada Council for the Arts and the Ontario Arts Council, an agency of the Government of Ontario.

    Funded by the Financé par le Government gouvernement du Canada of Canada

an Ontario government agency un organisme du gouvernement de l’Ontario

Contents

Acknowledgments  ix Introduction and Theory Introduction: Seeking a Better Conversation  5 paul bramadat 1  Crises of Trust and Truth: Religion, Culture, and Vaccine Hesitancy in Canada  16 paul bramadat 2  Vaccine Hesitancy: Ethical Considerations from Multiple Perspectives  56 kieran c. o’doherty, christine smith, and c. meghan mcmurtry 3  The Role of Risk Perception in Vaccine Hesitancy and the Challenge of Communication  80 conrad g. brunk History 4  Learning from Smallpox Inoculation Refusal: Early Scientific Debates and the Evolution of Vaccine Refusal  111 réal roy

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Contents

5  Not without Risk: The Complex History of Vaccine Resistance in Central Canada, 1885–1960  129 heather macdougall and laurence monnais Biomedicine, the State, and Vaccine-Hesitant/ Rejecting Communities 6  A Portrait of Vaccine-Hesitant Canadians  165 maryse guay, eve dubé, and caroline laberge 7  Vaccine Hesitancy and the Use of Complementary and Alternative Medicine  195 eve dubé, chantal sauvageau, and dominique gagnon 8  Epidemiologic Trends in Vaccine-Preventable Diseases and Immunization in Canada  229 julie a. bettinger and shannon e. macdonald 9  Canada’s Vaccine Safety System  261 monika naus, barbara law, and aline rinfret Vaccine Politics in Clinical, Media, and Community Settings 10  “It’s Your Body, Your Decision”: An Anthropological Exploration of HPV Vaccine Hesitancy  293 jennafer roberts and lisa m. mitchell 11  Approaching Vaccine-Hesitant Parents: A Clinician’s Perspective  321 françois d. boucher 12  The Roots of Vaccine Hesitancy  342 andré picard 13  Public Health and Personal Heuristics  348 noni e. macdonald

Contents

Conclusion 14  Continuing the Conversation  355 paul bramadat, julie a. bettinger, and maryse guay Appendix  365 Contributors  377 Index  385

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Acknowledgments

This is the first fully interdisciplinary book in Canada to explore this complex topic. It is the product of sustained critical engagement among medical scientists, clinicians, policymakers, social scientists, and humanists. The project required forms and levels of trust and cooperation that are quite unusual in any field. Our work would not have been possible without the generous support of the Quebec Population Health Research Network, the University of Sherbrooke, the Vaccine Evaluation Center of the University of British Columbia, and the Centre for Studies in Religion and Society at the University of Victoria. We are very grateful for this assistance. We are particular pleased that the book involved colleagues and data from French and English Canada and that the book will appear in both official languages; for the latter, we thank the University of Sherbrooke and the Quebec Population Health Research Network. Moreover, many students, colleagues, and staff at our respective universities and at the University of Toronto Press also supported our work both directly and indirectly. In particular, we would like to thank Robbyn Lanning, Leslie Kenny, and Rachel Brown at the Centre for Studies in Religion and Society, Stephen Shapiro and Eric Carlson at the University of Toronto Press, and three anonymous reviewers for helping to bring this project to fruition. Dr. Paul Bramadat, University of Victoria Dr. Maryse Guay, University of Sherbrooke Dr. Julie A. Bettinger, University of British Columbia Dr. Réal Roy, University of Victoria

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PUBLIC HEALTH IN THE AGE OF ANXIETY

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INTRODUCTION AND THEORY

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Introduction: Seeking a Better Conversation paul bramadat

Critics and supporters of Canadian immunization programs differ in many respects, but they arguably share a common exasperation about the way their presumed opponents approach individual and public health. The state of the debate around vaccinations and public health in Europe and North America is such that people on all “sides” of the issue are inclined to dismiss or discredit those they perceive to be suffering under the burden of a dangerous or wilful ignorance about the way the body, the economy, public health, and even the universe actually work. The outcome of these debates is of considerable public interest because discussions about serious infectious disease outbreaks typically lead to disagreements about what each individual owes his or her society; whether we can trust scientists, pharmaceutical companies, or medical experts; whether religious and cultural objections should be treated with deference; and whether the state sometimes ought to place limits on the personal choices. Such disagreements do raise serious and legitimate anxieties, not only among those worried about ­vaccine-preventable epidemics, but among minority religious and cultural groups that have fought so hard to protect their ability to make choices that are consistent with their own convictions and traditions. If the stakes involved in the debate were trivial, the polarized discussion would simply reflect the open dialogue that is such an important part of liberal society. In a decidedly low-risk scenario, one could simply urge people on all sides to try to observe good manners and not impose their opinions on others. Rather alarmingly, though, we face a different situation. The small numbers (perhaps 2–4 per cent of the population) of Canadians who entirely reject immunizations, and those in the growing cohort of people in what we may call the “vaccine-hesitant” community (perhaps 15–20 per cent), together constitute a number that threatens to weaken the “herd immunity”1 that is our most effective bulwark against infectious disease outbreaks many of us cannot even

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imagine. Of course, the estimates for those who reject or hesitate with regard to vaccination are quite speculative, since (for reasons that will become apparent throughout this book) people often pick and choose which vaccines they will accept or choose to operate outside of the recommended vaccination schedule. In any event, since the natural failure rate for many vaccines is around 5–10 per cent, and there are always a small number of people (such as newborns and those undergoing treatment for cancer) who cannot be immunized or are immunized but severely immuno-compromised, adding an additional 10–25 per cent of rejecting or hesitating citizens to this cohort seriously threatens optimal population-level projection.2 The two core objectives of this book are to enhance our understanding of the groups and social discourses that animate vaccine hesitancy and to articulate in a straightforward manner the complex ways vaccines are promoted among a diverse public. Probably the most basic problem facing those who would like to understand people who are either resolutely opposed to or merely hesitant about vaccinations is the heterogeneity of the motivations or “discourses” that bind these groups together. After all, some members of these communities • are merely ill-informed or uninformed about the case for immunizations (Akis et al. 2011, 1168), • are alienated from the medical establishment due to a negative personal experience, • are in fact members of the medical system (such as nurses) but feel that vaccination programs for certain pathogens – e.g., influenza – violate their personal autonomy (Hollmeyer et al. 2009), • have no memory of the ravages of diseases such as polio and diphtheria and thus doubt the value of even a minimal risk to themselves or their children (Roy, chapter 8 in this volume), • are deeply committed to an alternative or complementary medical perspective that frames conventional medicine as simply one among several equally effective ways of approaching health (Mnookin 2012, 33), • eschew conventional biomedicine in favour of a religious or spiritual interpretation of the body and the universe (Kata 2010; Guay et al. 2009; Kennedy and Gust 2008; Smith, Chu, and Barker 2004), • are paralysed by rapidly spreading Internet rumours about vaccine safety (Kata 2010; Healy and Pickering 2011), • suspect state immunization programs are part of an international conspiracy to control the population or reduce the birth rate (among other explanations), or • have questions about vaccine safety, public health program delivery, and the

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influence on these of corporate pharmaceutical interests (Smith, Chu, and Barker 2004, 193; Streefland 2001, 166). In many cases and communities, several of these motivations are combined (Kata 2010; Kennedy and Gust 2008, 132; Streefland 2001). Consequently, it is not surprising that people committed to vaccines often feel frustrated or even confused when they meet someone who espouses one – or several – of the explanations just listed. Which explanations are animating the hesitancy or rejection in a particular case? Why? How might advocates engage a sceptic or opponent with such mixed motivations in a productive conversation about his or her own (not to mention a child’s or a population’s) health? The confusion among vaccine advocates about the nature of these communities and discourses may lead to conflicts and misunderstandings with those who reject or are sceptical about vaccines, and it may create obstacles to entering into meaningful and productive conversations (Kennedy and Gust 2008). The authors in this book are not just aware of the diversity within the vaccine-hesitant and vaccine-rejecting communities but, along with the editors, have made efforts to ensure that a wide spectrum of these communities and claims are present in these chapters. Moreover, as some of the authors in this book indicate, wavering confidence in vaccines is not solely the fault of misinformed, partially informed, or paranoid citizens. In fact, in some cases immunization advocates have not been as humble as they might have been about their role in the eradication or elimination of diseases. In some cases, they have overstated the scientific case for a given vaccine; in other cases, they have not been as transparent as they might have been about the risks associated with particular interventions or the complex history of the development of vaccines in the West (Poland, Jacobson, and Ovsyannikova 2009, 3241; Mnookin 2012; Healy and Pickering 2011, 129; Offit 2011). Disentangling the knot of discourses associated with vaccines has become extremely challenging and yet also quite urgent. Key Concepts In a book written by scholars and practitioners rooted in a number of academic disciplines and professional settings, and intended to be read by a wide range of practitioners, policy makers, scholars, and students, it is challenging to offer tidy definitions of key concepts. Nevertheless, some basic definitions are necessary to prepare readers to engage critically with the core conceptual touchstones. In particular, it is important to elucidate the ways we use key terms such as “vaccine hesitancy,” as well as “cultural” as opposed to “religious” reasons for vaccine hesitancy.

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Those described as “vaccine hesitant” exist in the middle of a spectrum of opinions. At one end are those who are wholeheartedly in favour of vaccines and accept the scientific evidence used to promote them. On the other end of the spectrum are those who, for one reason or another, reject vaccines altogether and who might appear to be indifferent or hostile to any evidence or moral claims advanced to promote vaccination programs. Policymakers, practitioners, and scholars have been using the term “vaccine hesitancy” for roughly a decade (Dubé et al. 2013). The term is deceptively simple: on the surface it refers simply to those individuals and groups who are hesitant about some dimensions of vaccines. However, included in this broad cohort is a range of people, some who have a general anxiety about the safety of vaccines (but still get vaccinated), some who are selective about the illnesses for which they will be vaccinated, and some who are more hesitant for their children than they are for themselves. While this is an amorphous group, we describe hesitancy as the general phenomenon binding them together (Dubé et al. 2013; Environics Research Group 2011; Black and Rappuoli 2010). In this book, we address religious and cultural reasons for vaccine rejection and hesitancy. However, it is important to ask whether it is clear to us, and to readers, what we mean when we speak of “religious” and “cultural” reasons for vaccine rejection and hesitancy. This distinction is, arguably, one of the largest obstacles to understanding vaccine critics and to promoting some kind of conversation between all of the stakeholders in the debate. It is not necessary to burden readers with an exhaustive explanation regarding the way the concepts of religion and culture have become (for some people) so elastic as to include nearly every phenomenon or social force one can imagine, or (for others) so narrow as to exclude all but very specific phenomena. Suffice it to say that in anthropology, history, sociology, religious studies, theology, cultural studies, philosophy, and political science, there are generally accepted ways of using these concepts, but intractable debates often occur among specialists about whether these concepts point to clearly definable processes and phenomena. Nonetheless, although these terms cannot be defined in an unproblematic manner, it would be useful to begin by establishing some working definitions. Consider the following uses of the term “culture”: gay culture, Italian culture, youth culture, suburban culture, student culture, hip hop culture, French Canadian culture. In each case, these groups are bound together by specific forces: ethnic heritage, genetic commonalities, political affiliation, sexual orientation, generational realities, and aesthetic preferences. In order to avoid the problems associated with focusing on only one of these forces, and for the sake of expediency, we might in this book “operationalize” the concept of culture to refer to a group of people that shares a common set of values, beliefs, symbols, and

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practices that are passed from one generation to another and, with time, appear to most members of that culture to be immutable realities rather than conventions reflecting particular times and places (cf. Bramadat and Seljak 2005, 8). It is important to question whether we can consider those who reject and are hesitant about vaccines as part of a larger single culture. Would a member of a group that rejects all vaccines on the basis that they interfere with God’s plans for his or her body have much in common with someone from a group in which vaccinations against measles, meningitis, and pertussis are framed as sensible, but those against rubella and polio are not? Would members of either of these communities recognize – as members of a single culture – another person who objected to the smallpox vaccine because they believed it contained live smallpox virus, or someone else who believes the H1N1 vaccination was part of a government strategy to limit the fertility of certain groups? It is quite likely that some people in these cultures would find it puzzling – even infuriating – to be grouped with others. Here, the point is simply that it is probably better to speak of a number of subcultures that might share a particular behaviour to one degree or another (i.e., each person might refuse or seriously question one or all vaccines). However, these subcultures would differ, often dramatically, in terms of motivations, cosmologies, relationships with “alternative” or “complementary” health models, and orientations towards mainstream society. In popular (and some academic) discourse, the most common way to define religion is to distinguish it from spirituality. The former term – or so the common-sense definition goes – refers to formal institutions, creeds, rituals, symbols, doctrines, rules, and historically continuous norms which have provided enduring social structure for societies and psychological structure for individuals in a universe understood to be part of one divine architecture or another. Spirituality, by contrast, is commonly associated with both an informal and individualistic pursuit of wholeness, mental well-being, transcendence, and enriching personal experiences of something understood to be divine, often with a welcoming community of fellow seekers. The popular association of religion with formal institutions and spirituality with informal personal experiences will be familiar to most readers, although in the next chapter, I question the value of this distinction for our understanding of anti-vaccine and vaccine-hesitant discourses. Chapter Outlines Without engaging in a fairly creative rethinking of some common assumptions about religion and culture in Canada, it will be impossible to see some of the common threads connecting various varieties of vaccine hesitancy. As such, in the first chapter, I provide a critical introduction to the core religious

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and ­cultural dimensions of vaccine hesitancy in Canada. In the second chapter, Kieran C. O’Doherty, Christine Smith, and C. Meghan McMurtry provide an account of the variety of perspectives people use to make decisions about vaccines. The authors offer important insights into vaccine hesitancy, as each philosophical and psychological perspective frames the key issues and problems very differently, a fact that makes it difficult to assume that we could ever achieve convergence on a singular approach to vaccines. In the third chapter, Conrad G. Brunk provides an analysis of the ways people in our society interpret the risks posed by vaccines. Of particular interest to Brunk is the tendency among vaccine proponents to emphasize scientific evidence for vaccines even though a great deal of vaccine hesitancy is not strictly a function of incomplete or incorrect scientific information, but often mainly of different values (regarding the ways people define acceptable risk, the balance between individual autonomy and group responsibilities, the voluntariness of risk, etc.). Developing the capacity to discuss these complex value differences – alongside demonstrable errors in scientific understanding – would contribute significantly towards diminishing the animosity of debates about vaccines and also perhaps reducing vaccine hesitancy itself. The key concern of chapter 4 is history, as Réal Roy traces the complex development of vaccines over the last several centuries in China, Europe, and North America. Grasping the historical development of the scientific and social debates that have surrounded these techniques helps to provide some depth to our understanding of the contemporary debates. In chapter 5, Heather MacDougall and Laurence Monnais use an analysis of vaccine hesitancy in central Canada between 1885 and the 1960s to remind us that this phenomenon has been part of our public conversation for many decades. While some of the social processes and arguments they discuss seem unique to earlier decades and centuries, others bear a striking resemblance to debates that currently rage on this topic. As previously mentioned, vaccine-hesitant individuals and communities coalesce around quite distinctive concerns and values. In the sixth chapter, Maryse Guay, Eve Dubé, and Caroline Laberge provide a portrait of hesitant communities, underlining both the remarkable diversity and yet also the commonalities within this heterogeneous cohort. In the following chapter, Eve Dubé, Chantal Sauvageau, and Dominique Gagnon look more closely at four particular subcultures. They focus their attention on those who make use of “alternative or complementary” health providers, reflecting critically on the fact that there appears to be a strong relationship between such alternative health subcultures and vaccine hesitancy. In chapter 8, Julie A. Bettinger and Shannon E. MacDonald explain the quite dramatic effects of vaccines on serious diseases in Canada. Following their exposition of the evidence for the value of vaccines,

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they reflect on the effect of religious and cultural claims on the dwindling trust many Canadians have in vaccines. In the ninth chapter, Monika Naus, Barbara Law, and Aline Rinfret offer a thorough account of the ways the Canadian scientific, medical, and political establishments work together to ensure the safety of both existing and emerging vaccines. This chapter problematizes some of the concerns about nefarious collusion between “Big Pharma,” “Big Science,” and “Big Government” that haunt so many vaccine-hesitant discourses. The tenth chapter will introduce readers to the many meanings ascribed to a particularly controversial and relatively new vaccine. Jennafer Roberts and Lisa M. Mitchell employ ethnographic methods to reflect on the ways a group of female students at the University of Victoria experiences the promotion of the HPV vaccine; the women in their study articulate in their own words their serious concerns about vaccines and, in so doing, help to humanize the debates around vaccine hesitancy. In chapter 11, paediatrician François D. Boucher offers us his perspective on the conversations he has with vaccine-hesitant parents. His clinical experience enables him to offer succinct advice to other clinicians and leads him to emphasize the value of openness, patience, and long-term relationships with patients. Boucher’s conclusions and practical suggestions reflect the perspectives of many of the other authors in this book. In chapter 12, André Picard offers a critical response that links his experience as a health writer for Canada’s largest national newspaper to his assessment of the book. In the penultimate chapter, paediatrician Noni MacDonald offers her reflections on the some of the problematic intellectual shortcuts involved in thinking about vaccines. In the final chapter, three of the editors – Bramadat, Bettinger, and Guay – ­summarize the book’s key themes and identify issues that should be addressed in the near future. No book on a topic as complex as vaccine hesitancy and rejection could include a comprehensive account of the social, medical, political, and cultural forces at work; this is especially impossible for the first book to address the Canadian situation. For example, while the social determinants of health are discussed in almost all chapters in one way or another, authors do not explore in extensive detail the complex relationship between vaccination uptake, on the one hand, and social class, gender, race, socio-economic status, and one’s access to health facilities, on the other. As well, a discussion of the relationship between the Canadian and international approaches to the medical and social issues we discuss in our chapters may be addressed in a future volume. However, the authors who have written these chapters have provided readers with thorough lists of references to the most current literature on these broader concerns. As well, although several authors describe instances in which religious or cultural groups explicitly reject one or all vaccines, this is not the place to

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provide an extensive or thorough account of the theological and historical roots of these objections or movements. Our hope is that others will see this book as an invitation to enter more deeply into the specific religious, textual, and traditional factors that animate some of the religious and cultural resistance we are able simply to sketch in this book. Although the main focus of these chapters is a scholarly analysis of public and scientific attitudes towards vaccines and vaccine hesitancy, in several chapters, as well as in the appendix, we have provided a space for the voices of the vaccine hesitant to be heard. This book, then, sets the stage for a conversation; it is not the whole conversation. The dimensions of the debate on which we have focused our attention should allow future critics and scholars both to engage in a fruitful dialogue and to fill any gaps evident in our approach. Conclusion Over approximately two years, an interdisciplinary team of authors and editors from a number of regions in Canada engaged in a wide-ranging discussion about vaccines, public opinions, and religious and cultural roots of vaccine rejection and hesitancy. For the past two years of writing and revising, there were lively debates on data, theory, and methods. This book is the result of two face-to-face meetings at which we each learned, taught, and struggled to come to terms with the scientific, psychological, historical, cultural, and religious aspects of vaccine hesitancy. Conducting research aimed at bridging the chasms sometimes separating people in this debate cannot be the responsibility of a single discipline; rather, as this book demonstrates, epidemiologists, anthropologists, physicians, philosophers, public health practitioners, nurses, journalists, policy makers, biologists, historians, and religious studies scholars are all essential partners in working to assess the many forces involved in the increased vaccine hesitancy we see among the public. Only with an effort to overcome the intellectual insularity that can, at times, characterize thinking and writing from strictly scientific, social scientific, and humanistic perspectives can we hope not only to provide a clear account of the public health implications of our current cultural impasse, but to stimulate a (more) humble kind of engagement between and among advocates, sceptics, and rejecters (Poland, Jacobson, and Ovsyannikova 2009; cf. Healy and Pickering 2011). By way of both a warning and an enticement, I should note that there is a considerable methodological range in this book. I recognize that it can be a rather jarring experience to move from, for example, a historical perspective to an epidemiologic perspective, or from a philosophical perspective to a clinical perspective, given the differences in the way those disciplines engage information and

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t­heories. However, my co-editors and I came to believe that it is not just that such disciplines all have something valuable to contribute to the conversation we need to have about vaccine hesitancy, but that it is important for people working within, say, the humanities and social sciences to pay close attention to the ways colleagues in the medical or public policy fields write and think about what are ostensibly the same issues. It was certainly the case that the participants in this book benefitted from crossing the proverbial disciplinary floor on many occasions; our hope is that our readers might reap similar rewards. The authors of this book approach the debates around vaccines from a wide range of perspectives. While our opinions on the value of one or another vaccine vary somewhat, we generally agree that, due to the challenges identified in this book, the case for what is demonstrably one of the most significant health interventions in human history has not been made as effectively and compellingly as many advocates might have wished. Regrettably, pro- and anti-vaccine activists often stake out philosophical, political, and scientific positions that are so diametrically opposed that one has to wonder whether there is any common ground on which we might discuss a resolution of the considerable disagreements involved. This book represents an effort to transcend – or, at least, to carefully demonstrate tensions between – an almost entirely pro-vaccine medical establishment on the one hand and the wide range of people who reject or are hesitant about vaccines on the other. The blame – if one must speak in such terms – for the impasse that often characterizes the debates between “pro-” and “anti-” vaccination activists is shared. It is neither the case that anti-vaccination movements have sprung up unpredictably, nor that “anti-vaxxers” delight in maligning science at any and all opportunity. In fact, these concerns have been with us since the beginning of vaccinations; moreover, the movements demonstrate the power of conviction, emotion, and intuition to create an alternative definition of what might constitute a plausible argument. Vaccine-hesitant individuals and groups often have strong feelings about dangerous vaccines, greedy scientists, imperious doctors, meddling governments, and the heartless economics of “Big Pharma.” All of these concerns and grievances need to be heard, and many are legitimate. The narratives that emerge within vaccine-hesitant subcultures might be explicitly linked, for example, to claims that there is mercury, formaldehyde, or fetal stem cells in vaccines or their production, or that the rate of adverse effects for a given vaccine is too high to justify its promotion. While these specific claims might be subject to simple confirmation or refutation, it is equally important to understand that these stories resonate with individuals, groups, and many members of broader society because they strike them as intuitively correct and disquieting. We acknowledge that both the problems that bedevil

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our public conversation about vaccines and the solutions to these challenges are the responsibility of all stakeholders in the debate: the vaccine hesitant, vaccine developers, clinicians, scholars, and policy makers. To our knowledge, this project is the first of its kind in Canada. As such, we have no guides on this journey. We have in common our curiosity about the current scientific consensus on vaccine safety; the nature of the arguments against vaccines; the scale of vaccine hesitancy in Canada; the ways medical research is disseminated to and interpreted by the public; the effect of public discourse, subcultures, and religious ways of thinking on how people make decisions about their own and their society’s health; and the future of public health and vaccine-preventable diseases in Canada. Our hope is that this project will help to cultivate a context in which social scientists, medical scientists, physicians, public health scholars, and humanists can share with one another the fruits of their intellectual labours. NOTES 1 “Herd immunity” is defined as the form of indirect immunity provided to unvaccinated individuals by virtue of the fact that the vast majority of community members are vaccinated, and thus infectious diseases are unable to spread throughout the community. 2 Of course, even the notion of the optimal herd immunity needs to be considered carefully, since the desired and appropriate levels would be different depending on the specific characteristics of the pathogens. Elsewhere in this book (see especially Bettinger and MacDonald, chapter 8 in this volume), authors reflect on a number of these variables.

REFERENCES Akis, S., S. Velipasaoglu, A.D. Camurdan, U. Beyazova, and F. Sahin. 2011. “Factors Associated with Parental Acceptance and Refusal of Pandemic Influenza A/H1N1 Vaccine in Turkey.” European Journal of Pediatrics 170 (9): 1165–72. http://dx.doi. org/10.1007/s00431-011-1425-6. Black, S., and R. Rappuoli. 2010. “A Crisis of Public Confidence in Vaccines.” Science Translational Medicine 2 (61): 61mr1. http://dx.doi.org/10.1126/ scitranslmed.3001738. Bramadat, P., and D. Seljak, eds. 2005. Religion and Ethnicity in Canada. Toronto: Pearson.

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Dubé, E., C. Laberge, M. Guay, P. Bramadat, R. Roy, and J. Bettinger. 2013. “Vaccine Hesitancy: An Overview.” Human Vaccines & Immunotherapeutics 9 (8): 1763–73. http://dx.doi.org/10.4161/hv.24657. Environics Research Group. 2011. Canadian Adult National Immunization Coverage (NICS) Survey e 2010-Québec, p. 109. Ottawa: Ministère de la Santé et des Services sociaux du Québec. Guay, M., F. Gallagher, G. Petit, S. Ménard, P. Clément, and G. Boyer. 2009. Pourquoi les couvertures vaccinales chez les nourrissons de l’Estrie sont-elles sous-optimales? Sherbrooke: Centre de santé et de services sociaux – Institut universitaire de gériatrie de Sherbrooke. http://www.santeestrie.qc.ca/clients/CIUSSSE-CHUS/professionnels/ vaccination/Etude_couvertures_vaccinales__nourrissons_Estrie_2011.pdf. Healy, M.C., and L. Pickering. 2011. “How to Communicate with Vaccine-Hesitant Parents.” Pediatrics 127 (Suppl): S127–33. http://dx.doi.org/10.1542/peds.2010-1722S. Hollmeyer, H.G., F. Hayden, G. Poland, and U. Buchholz. 2009. “Influenza Vaccination of Health Care Workers in Hospitals: A Review of Studies on Attitudes and Predictors.” Vaccine 27 (30): 3935–44. http://dx.doi.org/10.1016/j. vaccine.2009.03.056. Kata, Anna. 2010. “A Postmodern Pandora’s Box: Anti-Vaccination Misinformation on the Internet.” Vaccine 28 (7): 1709–16. http://dx.doi.org/10.1016/j. vaccine.2009.12.022. Kennedy, A.M., and D.A. Gust. 2008. “Measles Outbreak Associated with a Church Congregation: A Study of Immunization Attitudes of Congregation Members.” Public Health Reports 123 (2): 126–34. Mnookin, S. 2012. The Panic Virus: The True Story behind the Vaccine-Autism Controversy. New York: Simon and Schuster. Offit, P. 2011. Deadly Choices: How the Anti-Vaccine Movement Threatens Us All. New York: Basic Books. Poland, G.A., R.M. Jacobson, and I.G. Ovsyannikova. 2009. “Trends Affecting the Future of Vaccine Development and Delivery: The Role of Demographics, Regulatory Science, the Anti-Vaccine Movement, and Vaccinomics.” Vaccine 27 (25–6): 3240–4. http://dx.doi.org/10.1016/j.vaccine.2009.01.069. Smith, P., S.Y. Chu, and L.E. Barker. 2004. “Children Who Have Received No Vaccines: Who Are They and Where do They Live?” Pediatrics 114 (1): 187–95. http://dx.doi. org/10.1542/peds.114.1.187. Streefland, P.H. 2001. “Public Doubts about Vaccination Safety and Resistance Against Vaccination.” Health Policy 55 (3): 159–72. http://dx.doi.org/10.1016/S01688510(00)00132-9.

1 Crises of Trust and Truth: Religion, Culture, and Vaccine Hesitancy in Canada paul bramadat

Many of us assume or hope that people make personal medical decisions in an “evidence-based” manner, knowing that correctly interpreted empirical evidence will lead the way towards a healthier society for all. Such rational, responsible adults would be immune to fear, ignorance, and magical thinking, not to mention the claims of self-serving corporations, overbearing governments, and idiosyncratic interest groups. The reality, of course, is that such unfettered free agents only exist in the abstract. In fact, even what appears to be a simple decision such as selecting which car to purchase is influenced by both readily available empirical data (e.g., which vehicle has the best mileage, sufficient space, etc.) and a plethora of subjective variables (e.g., the percentage of one’s income one decides to spend on a car, the social statement each car might make and how important that statement is to the individual driver). Buying a car is a complicated endeavour, full of often-subconscious psychosocial forces leading one to make decisions that may appear to others to be contrary to the available evidence, common sense, and good taste. However, personal health decisions are often exponentially more complicated because medical claims made by friends, alternative health care providers, colleagues, Internet “experts,” and trained biomedical (sometimes called allopathic) health professionals often seem to be in tension, if not indeed equivocal. This impression is often shared not just by ill-informed or disinterested patients or parents but even by people such as the well-informed individuals imagined in the opening sentence. Patients are not only bombarded by conflicting information, but the timeline for making some decisions (especially for one’s children) is often so short, and the implications involved (for oneself or one’s children and society) are often perceived to be so serious, that it becomes both extremely important and exceedingly stressful to make an informed, sober choice.

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The subjective variables that bedevil decisions about vaccines are often rooted not just in one’s culture (as are many of the concerns associated with a vehicle decision) but also in religion. It is important for those who want to engage effectively in conversations about the safety, affordability, public reputation, funding, side effects, and efficacy of vaccines to grapple critically and humbly with the powerful roles of religion and culture in the dynamic public and medical discourse(s) that swirl around the practices and policies of immunization. In this chapter, I reflect on how scientists, public health practitioners, clinicians, citizens, and scholars might interpret the continued existence of vaccinehesitant and rejecting communities and their discourses, despite the scientific consensus around vaccines. First, I discuss the major tectonic shifts currently reshaping the religious landscape of Canada. This sociological portrait should provide readers with a backdrop against which to understand those incidents of vaccine refusal or hesitancy that are linked explicitly to religious claims or communities. Second, I offer a brief critical reflection on the key cultural shifts that, over the past several decades, have given rise to significant levels of doubt about vaccine programs. These broad and likely irreversible social changes have dramatically diminished the power and privilege of conventional biomedicine and have created significant obstacles for maintaining or expanding vaccine coverage. Third, I call into question the standard distinction between cultural and religious reasons for vaccine hesitancy and rejection. Although there are good reasons why we often think about these two phenomena separately, there is some value in identifying the arguably common perspective that underlies most religiously and culturally based criticisms of vaccines. Religion in Canada Many of the claims made about the Canadian religious landscape – for example, the assertion that religion is inexorably on the wane or that conservative Protestantism threatens to infiltrate public life – often reflect distorted impressions of more complex or more mundane phenomena. An account of the key religious shifts evident in our society will better equip readers both to understand the relatively rare cases of official (i.e., institutionally derived or otherwise formal) religious rejections of vaccines and to reflect on the arguments I make about the often quasi-religious nature of many anti-vaccine discourses. Much of this section is fairly descriptive, although I do speculate about some of the implications of the shifts I am observing in health care in Canada, and in vaccination programs in particular. Let us begin with a claim that is often articulated as a truism in our society and that has some bearing on our discussions about vaccines: religion is

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floundering and spirituality is thriving. What might we mean by “religion” and “spirituality” in such an assertion? For the moment, we will bracket the debate among religious studies scholars about the definition of religion (Arnal 2000). For our purposes, it is practical to use the term in the way it is used by the majority of Western clinicians, scientists, patients, and others engaged in debates around vaccines. According to this dominant definition, religion involves doctrines, dogmas, institutions, established rituals, enduring traditions, a professional class of clergy and their supporters, norms related to sexuality and the afterlife, and, usually, beliefs about a divinity. As noted in the introductory chapter, spirituality is the term that is often juxtaposed with religion; usually the former term refers to the personal experience an individual might have of the divine, their community, the universe, or themselves. Spiritual experiences – according to this common binary construction – are not entirely dependent upon institutional religious settings. Rather, they are often described as sublime, extra-institutional, subjective, and impressionistic.1 As suggested by the tables below and by research over the past two decades (Bibby 2011; Bramadat and Seljak 2005, 2008, 2013), identification with the dominant Protestant forms of Christianity (e.g., Anglican, Lutheran, Presbyterian, and United Church forms) has been in decline for several decades. Roman Catholics seem to be resisting this trend, but as a trip to large churches in Toronto and Montreal confirms, this is mostly due to the involvement of first-generation immigrants from Catholic societies such as the Philippines and Poland. We may see a decline in the number of practising Catholics as relative newcomers begin to adopt the approach to religion espoused by more settled Canadians; indeed, the relative stability of the number of people who identify as Roman Catholic might change if Canada’s immigration patterns shift more definitively towards regions in which Catholic populations are very modest. As well, what it means for French Canadians (who represent a large segment of Canada’s Catholic population) to say they are Roman Catholic is complicated (Lefebvre 2008). In many instances, such a claim says as much or more about the fact that they were baptized as Roman Catholics and that they continue to see Catholicism as intimately and intractably linked to Québécois culture and nationhood as it does about cherished religious beliefs and practices. Since many francophone Québécois are concerned about the survival of their linguistic minority in a continent of almost 350 million anglophones (not to mention those who speak neither English nor French as a first language), there is a tendency among Québécois to perceive all markers of cultural difference – such as the French language and Roman Catholicism – as inalienable features of their

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national (and in many cases, personal) self-understanding (Lefebvre 2008). As such, for all of the reasons outlined in this paragraph, the apparent relatively stable Roman Catholic figures need to be interpreted cautiously. Related and distinctive processes are also at work in the dominant AngloProtestant communities in Canada. There are, in other words, Canadians who continue to tell pollsters that they are attached to the Anglican or United Church, for example, when in fact many of them have no connection with any church, have not raised their children in the church, and have a tenuous relationship with the beliefs, habits of thought, traditions, institutions, and texts of their church. While some individual churches in these historic denominations remain vibrant and are even growing, they are often the exceptions that prove the denominational rule; even the dramatic decreases in identification we have seen in the past thirty years (roughly 30 per cent for the United Church and 20 per cent for the Anglican Church between 2001 and 2011) may understate the crises in their churches. Indeed, in a recent book on religious and ethnic diversity in Canada’s Christian community, David Seljak and I discerned a clear “discourse of loss” among all of the authors writing about the major historic denominations (Bramadat and Seljak 2008), a reflection of the fact that they are aware that their numerical and cultural dominance is waning. This crisis is not just reflected in the rather blunt instrument of the Canadian census, in which every ten years people are simply asked, “What is your religion?” According to data from the General Social Survey, run annually by Statistics Canada since 1985, attendance at religious services has fallen dramatically across the country over the past twenty-seven years. Nationally, only 16.9 per cent of Canadians aged fifteen and over attended religious services on a weekly basis in 2012, compared with 27.2 per cent in 1985. In 2012, 44.1 per cent of adults reported that they had not attended religious services during the twelve months prior to the survey (excluding for special occasions such as weddings, funerals, or baptisms), compared with an estimated 29.8 per cent in 1985 (Statistics Canada 2014).2 Several important caveats should be considered before one draws the conclusion that an extreme version of the secularization hypothesis – the notion that across the board, religious groups are losing their institutional coherence, their appeal to individuals, and their grip on the levers of power – accurately describes the current Canadian scenario. First, as the sociologist José Casanova (1994) reminds us, even when it appears that religion is of no great interest to many individuals and certainly not to an entire society, it always retains the capacity to surprise us. In his landmark Public Religions in the Modern World (1994), he showed that in a number of societies (Spain, the

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United States, Brazil, and Poland) religious groups moved from the margins to the centre of social and political power, and from those new vantage points, they created significant changes in their societies. Indeed, it is impossible to understand the 2016 election of Donald Trump without bearing in mind the fact that he received the support of over 80 per cent of American evangelical Protestants.3 As such, it is unwise to assume that religion will never again be a major and perhaps even defining source of identity and political solidarity in North America. Second, it is important to note that conservative forms of Christianity are not subject to the same kinds of losses as other Christian denominations. As the tables below demonstrate, conservative Protestant denominations are faring fairly well, some even showing increases in membership. Sociologist Reginald Bibby argues that this reflects the fact that evangelicals tend to be more successful at retaining their young people and also that these traditions excel at distinguishing themselves from the dominant society (1987, 1993, 2011). As well, there have been shifts in the ways conservative Protestant groups define and market themselves, with many moving away from conventional denominational identifications towards more generic loyalties (simply “Christianity,” “conservative Protestantism,” or “evangelical Christianity”). Whatever theory one might use to explain the relative health of these conservative traditions within a liberal society, the statistics indicate that we are not necessarily seeing a juggernaut of secularization overrunning all forms of Christianity. What one might call the “market share” of Christianity has changed from 83 per cent of the overall population in 1991 to 67 per cent in 2011 (the last date for which we have official figures from Statistics Canada). Nonetheless, even though the Christian proportion of the broader society continues to decline (one might speculate that the figure in 2017 is about 60 per cent), it remains the largest religious group in Canada by a very wide margin. By contrast, in 2017 all of the non-Christian traditional religions (Islam, Judaism, Hinduism, Sikhism, Buddhism) combined account for approximately 10 per cent of the population. Changing definitions of what it might mean for someone to say (or to stop saying) they are Pentecostal, Baptist, or, for that matter, Roman Catholic, Anglican, or Presbyterian challenge traditional denominational affiliations, a possibility that would lead one to draw less negative conclusions about the future of Christianity in Canada, even if the data suggests that certain denominations (e.g., Anglicans and United Church Christians) face significant challenges to their long-term viability (see Table 1.1). Third, it is not yet clear how one should interpret the dramatic rise of the “religious nones” in Canadian religious demographics. These individuals who describe themselves as having “no religion” in surveys are, after all, not just a large segment of our society (approximately 24 per cent of the whole population), but their growth rate is quite remarkable (from 12 per cent of the population in

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Crises of Trust and Truth Table 1.1  Decline/growth in major Christian denominations since 1991 Denomination

1991–2001

2001–2011

2011 total

Roman Catholic United Church Anglican Lutheran Conservative Protestant Baptist Pentecostal Christian, N.O.S.*

+5% −8% −7% −4.5% +10% +10% −15% +154%

−1% −29.5% −20% −21% +19.5% −13% +30% +110.5%

12,500,000 2,000,000 1,500,000 478,000 4,200,000 635,000 478,500 1,500,000

*“Christian, not otherwise specified.” This group would include some people whose form of Christianity was extremely conservative Protestantism and who are not affiliated with an existing recognized denomination, as well as those Christians whose attachment to the tradition is quite nominal. Table 1.2  Growth in non-religious identifications since 1991 Non-religious identity

 1991

 2011

No religion Agnostic Atheist

  3,390,000 (12%)* 22,000 13,500

  7,850,000 (24%) 36,000 49,000

*Percentages refer to share of Canadian population.

1991 to 24 per cent in 2011 and, if trends continue, approximately 30 per cent in 2017; see Table 1.2). It is important to note that this category includes a wide variety of people: atheists, agnostics, secular humanists, conservative Christians who reject all traditional denominational labels (and yet who are ardently committed to a life of faith), people who believe the state ought not ask about their religious identity, and some New Age spiritual practitioners for whom “religion” denotes something uniformly negative and yet who do not find on the census form (or in public discourse) an appropriate alternate option for themselves.4 Clearly, the growing numbers of nones in our society does not herald the end of the questions, habits, and practices often associated with religion – but precisely what this large group does mean for our society is not yet entirely clear. Fourth, Muslim, Buddhist, Sikh, Hindu, and traditional Chinese religious communities,5 are also growing in Canada (see Table 1.3). The first four of these groups have grown between roughly 50 and 130 per cent in each of the last few decades (Bramadat and Seljak 2008; Statistics Canada 2011), and Indigenous forms of spirituality are currently in the midst of an apparent renaissance. Unless Canada radically alters its immigration policies, and unless the birth rates among our Indigenous populations decrease dramatically, individuals and

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Table 1.3  Empirical snapshot of Canada’s religions in 1991 and 2001* Religion

1991

2011

Muslims Sikhs Hindus Jews Buddhists No religion

253,000 147,000 157,000 318,000 163,000 3,390,000

1,050,000 454,000 500,000 329,000 367,000 7,850,000

*Given the size of the Christian community (over 20 million), it is most helpful to know about the quite dramatic changes in the percentage of Canadians identifying themselves as Christian. In 1991, 83% of Canadians described themselves as Christian; in 2011, 67% did.

communities associated with these forms of religion and spirituality are likely to continue to grow substantially in absolute as well as relative terms. A few final observations should indicate the connections between the changing religious landscape and the issues we discuss in this book. Four main shifts, occurring at roughly the same time, mean we are witnessing the end of several centuries of unchallenged Christian dominance in Canada: (1) the gradual end of the practice of maintaining a singular conventional religious affiliation throughout one’s life, (2) the ongoing demographic changes wrought by Canadian immigration policies, (3) the forms of secularization we have seen in Canada, and (4) the expanding numbers of people who espouse no particular religious identity at all. While it is not yet clear what kind of a future Christian religious structures, beliefs, texts, practices and communities will have in Canadian society, it is premature to conclude that this current period of decline will result in their demise. Both the fact that Christian immigrants continue to be a significant part of the total number of new Canadians admitted each year (Statistics Canada 2003) and the historical entrenchment of the existing Euro-Christian cohort and customs within virtually all of our institutions mean that Christianity will continue to be an important part of Canadian society for the foreseeable future. However, the ways Canadian Christians will practice, identify, believe, congregate, and engage with non-Christians and the state in the future are uncertain. Clearly, the foregoing discussion should lead us to question the ubiquitous claim that religion is declining whereas spirituality is growing. Much depends on how one defines religion and spirituality. If one defines religion more broadly to refer not simply to official denominations and institutions (many of which are clearly in decline) but also to the panoply of incipient and actual “spiritual” movements that exist and thrive within and outside of institutions (Woodhead and Heelas 2005; Beaman and Beyer 2008; Wuthnow 2000), then one would have to say that religion in this sense is doing fairly well in our society.

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Religion, Vaccines, and Canadian Culture Having explored some of the salient aspects of contemporary religion in Canada, I should note that, as many of the authors in this book demonstrate, much of vaccine hesitancy seems more related to relatively amorphous cultural rather than to specific religious motivations (a distinction I question below) (cf. Kata 2010, 1713). In fact, while formal instances of religious prohibitions are few and far between, the numbers are not negligible and the potential damage is hardly trivial. Indeed, any disease outbreak should cause us to reflect upon conventional public health policies (Salmon et al. 1999, 47) and the cultural and religious convictions and sensibilities associated with the communities in which the infections have appeared. The College of Physicians of Philadelphia (2017) captures well the two key religious concerns raised with respect to vaccines: “(1) the ethical dilemmas associated with using human tissue cells to create vaccines, and (2) beliefs that the body is sacred, should not receive certain chemicals or blood or tissues from animals, and should be healed by God or natural means” (cf. Grabenstein 2013).6 Notable examples (discussed elsewhere in this book – see chapter 8 by Bettinger and MacDonald) of religiously linked outbreaks include the measles outbreak of 2014 and the pertussis outbreak in 2012, both in the Fraser Valley, British Columbia, and an outbreak of rubella in 2005 near Woodstock, Ontario (cf. Alphonso 2012; Basrur 2005; Maki 2014; De Serres et al. 2013; Deeks et al. 2014). Although there are differences between the illnesses, regions, and religious communities involved, in these cases, a small number of fundamentalist Protestants contended that vaccines interfere with the plans God has for each person and thus represent the human desire to usurp God’s authority.7 The individuals and groups in question in the recent Canadian cases belong to the Dutch Reformed tradition, which arose as an offshoot of the Protestant Reformation. Organized around the leadership of the sixteenth-century Swiss evangelist John Calvin, so-called Reformed Christianity spread to a variety of societies in Europe over the next centuries and adapted to the political and national surroundings into which they moved. The Dutch expression of this kind of Protestantism has existed in Canada since the nineteenth century but increased due to a second wave of Dutch immigration following the Second World War. A segment of this community reflected and still reflects its European progenitors’ suspicions of the dominant secular world. Although members of these communities do not live communally or in a segregated manner (as in the case of the Amish), some of them do espouse views of “the world” and God’s supremacy, which lead them to be resistant to state and social pressure to conform. This antagonistic orientation to the hegemonic social and religious forces that surround them began in the s­ixteenth

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century during a period in which they clashed both with the dominant Roman Catholic and rapidly expanding Lutheran traditions (and among themselves, as well). Their early emphasis on predestination set them apart from the prover­ bial religious competition and became a foundational feature of Reformed churches. This approach to the world leads some members of these communities to be suspicious of all human interventions that would appear to challenge major features of “God’s plan” for their lives. For some – again, those espousing strict versions of these views would be few in number, even within the broader Reformed form of Protestantism – humans should not alter God’s evident plan for their lives. Some of them would adopt a similarly conservative position with regard to the role of women in leadership, the appropriateness of alcohol consumption, and the permissibility of homosexual or premarital sexual activity. Of course, such views are consistent with many forms of fundamentalist Protestantism (Bramadat 2000; Stackhouse 1993); what makes the Dutch Reformed subculture interesting to colleagues working in public health is the fact that some members within this group consider vaccines to be morally problematic interruptions of God’s plan. Of course, this is not the only form of Christianity associated with worries about vaccines. There has been concern among some Roman Catholics, for example, that some vaccines were developed using cell lines derived from aborted human fetuses.8 However, while the official representatives of the Catholic hierarchy are concerned about condoning medical interventions that involve cell lines from abortions – even those performed decades ago for reasons other than immunization programs – they also seem to recognize that, in the absence of alternatives to immunizations, the possibility of preventing needless suffering makes it not only acceptable but necessary for people to vaccinate their children. In “Moral Reflections on Vaccines Prepared from Cells Derived from Aborted Human Foetuses,” the Pontifical Academy of Life (2005) concludes the following: As regards the diseases against which there are no alternative vaccines which are available and ethically acceptable, it is right to abstain from using these vaccines if it can be done without causing children, and indirectly the population as a whole, to undergo significant risks to their health. However, if the latter are exposed to considerable dangers to their health, vaccines with moral problems pertaining to them may also be used on a temporary basis. The moral reason is that the duty to avoid passive material cooperation is not obligatory if there is grave inconvenience. Moreover, we find, in such a case, a proportional reason, in order to accept the use of these vaccines in the presence of the danger of favoring the spread of the pathological agent, due to the lack of vaccination of children. This is particularly true in the case of vaccination against German measles [rubella]. (546)

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To put it another way, Catholic leaders recognize that one of the harms avoided by rubella immunizations, dependent on the cell lines of two aborted fetuses (one from 1964, the other from 1970), is the (future) spontaneous and induced abortions of many fetuses, not to mention the harm caused to babies and mothers who would otherwise become infected. For these reasons, even though some Roman Catholics have grave misgivings about the ways vaccines have been developed, we do not find conventional or even conservative Roman Catholic views of vaccines and health at the root of outbreaks in Canada (cf. Grabenstein 2013, 1999; CDC 1999). In addition to the conventional expressions of formal religious objections, I would add a third, more explicitly political, possibility: in some cases, vaccines are interpreted by cultural/religious leaders to represent an expression of imperialism. For example, some Muslim leaders in Nigeria rejected the polio vaccine for their community, citing fears that the vaccine might be intentionally contaminated with ingredients leading to HIV infection and infertility (Jegede 2007; UNICEF 1997),9 a rumour that was echoed in some respects by religious leaders in Cameroon (Feldman-Savelsberg et al. 2000). Moreover, it is not surprising that some – especially religious and political leaders in Muslim societies – might question the value of vaccination programs; after all, in the case of Afghanistan and Pakistan, the international public health community was alarmed to learn that employees from the U.S. Central Intelligence Agency posed as Western health care workers delivering vaccines in order to locate Osama bin Laden. While some locals might not have mourned bin Laden’s ultimate fate in May 2011, the episode did create doubt in the minds of some about the motivations that might accompany Western involvement in overseas health care projects. Indeed, in December 2012, volunteer health workers providing the polio vaccine in Afghanistan were assassinated by the Taliban, and a few months later the anti-polio campaign in that country was halted in some provinces following safety concerns flowing from local fears that the practice represented an aggressive, colonial, and “un-Islamic” interference in traditional practices (Graham-Harrison 2012, 2013; cf. Warraich 2009). In other words, public and political controversies about vaccinations and, more broadly, the role of Western health care and military interests in the developing world must be understood against the backdrop of a longer story of imperial entanglement of “the West” with the “Muslim world” or, for that matter, the “developing world.” While conversations about these actors and fields of action might rely upon notions of the West and the Muslim world, which turn large and complicated realities into more easily narrated and politicized “imagined communities,” and while one might regret the flattening out of a more complex reality, surely the resulting wariness with regard to Western medical

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interventions – such as vaccines – was predictable. This is probably why the original title of a widely-read May 2013 Scientific American editorial about some of the consequences of the Osama bin Laden assassination was “The Spies Who Sabotaged Global Health.”10 In most of the cases in which formal religious communities – or even just their leaders – reject or express serious doubts about vaccines, the actors in question have mostly been “fundamentalists” in the sense that they represented very small and quite conservative versions of their larger (and typically vaccine-positive) traditions, and in the sense, as well, that they understand themselves as belonging to besieged communities that are often set against the dominant society. However, in addition to the small number of Roman Catholics who are concerned about some features of vaccines, other nonfundamentalist groups, such as Christian Scientists (with a small population – likely under 5,000 – in Canada), have well-established anti-vaccine stances. In the Christian Scientists’ case, the rejection or hesitancy does not spring from an encompassing adversarial relationship to a debauched or hostile liberal society. Rather, their official rejection of vaccines is related to their religious conviction that prayer, rather than medicine, is the best route to healing the body, because the body and its illnesses are, like all matter, illusory. Prayer is the means by which believers shed the limitations imposed upon them by the material world (such as illness). This approach to vaccines, then, comes out of a religious perspective in which the very categories of illness and health – indeed, the very nature of reality – are questioned, but which allows practitioners to function fairly easily within a liberal society (Stark 1998). As sociologists have been noting for some time, people tend to “mix and match” elements of religion in idiosyncratic and often apparently contradictory ways (Bibby 1987, 1993). By 2017, this claim is quite unremarkable to scholars of religion, although it often puzzles outsiders and aggravates orthodox members of religious communities. In any event, this tendency might be extrapolated somewhat to suggest that one should expect such fluidity and open-endedness to be evident also in the way insiders grapple with the implications of religious traditions for health practices such as immunizations.11 While in some instances the formal position of religious groups on vaccines has not changed in response to research or public policy shifts, in other cases the debate on the value of vaccinations is indicative of significant pragmatism. The Vatican, for example, has allowed the use of rubella vaccines, indicating that “children and unborn children must not pay the price for ‘the licit fight against pharmaceutical companies’ that produce immoral vaccines [using cell-lines (but not actual cells or tissue) from aborted fetuses]” (Glatz 2005). In addition to these specific cases of religiously motivated vaccine hesitancy or refusal, there are at least two more general connections we might

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make between the above reflections and the debates around vaccines. First, since Canadian immigration policy is based on a “point system” that privileges those familiar with Western norms, language, and education, many newcomers arrive in Canada already committed to the Western medical model. Although studies seeking a connection between immigration status and attitudes to vaccines are still in their infancy (cf. Streefland 2001),12 the increasing numbers of relatively new Canadians with backgrounds in Asia, Africa, and Latin America do nevertheless sometimes bring with them views of the body, illness, community, and medicine (Coward and Ratanakul 1999) that set them apart from the dominant society. It is futile (and arguably unethical) to insist, expect, or even hope that those who do adhere to non-Western alternative or complementary medicine will abandon their practices and beliefs upon arrival. However, keeping abreast of these non-Western or alternative approaches to health– such as Ayurveda, traditional Chinese medicine, and acupuncture – is crucial if vaccine proponents wish both to relate respectfully to this growing cohort within our societies and to promote immunization practices within these subcultures. Second, the growth in the quite significant “no religion” cohort may also present certain challenges to vaccine advocates. Although survey trends (discussed above) would suggest that in 2017, probably more than 30 per cent of Canadians would report that they have no religious affiliation, many people within this amorphous cohort arguably belong to the “spiritual but not religious” (SBNR) subculture (Chandler 2008). As the name suggests, these individuals continue to have and value spiritual experiences (often vaguely defined), but they see no need to associate these experiences, or themselves, with any formal religious institution. Anecdotally, roughly 50 per cent of my students at two Canadian universities (from over fifteen years of teaching) describe themselves as SBNR; U.S. and Canadian research, as well as recent Canadian news stories, reflect similar patterns.13 Although sociologists are just beginning to identify the Canadian SBNR cohort analytically (Chandler 2010), this approach to religion and spirituality is growing rapidly and will likely rival mainstream Christianity in a decade or two, especially in urban areas such as Vancouver, Toronto, and Montreal. Moreover, it is among such people that one can expect – by definition – to find a dwindling attachment to, and indeed a general mistrust of, religious institutions. It is not unreasonable to extrapolate somewhat to expect that this mistrust would extend to formal institutions of many kinds. There have yet to be empirical studies that probe the views of SBNR individuals regarding vaccines, but recent evidence suggests that within this burgeoning subculture one would find a disproportionate number of those who reject or are hesitant about vaccines. Indeed, as Kata (2010) notes, there is an overlap between alternative spirituality, alternative lifestyles, and anti-vaccine arguments: “Most (88 per cent) [of the

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health websites she analysed] endorsed treatments such as herbalism, homeopathy, chiropractics, naturopathy, and acupuncture as superior to vaccination. This was linked to the idea of moving ‘back to nature’ (on 88 per cent of sites), where natural methods of disease prevention were preferable – this included breastfeeding, eating whole foods, and allowing children to experience illnesses naturally” (1712; cf. Chandler 2008; 2010; Guay et al. 2009). As many authors in this book suggest, it would be wise for vaccine supporters to pay close attention to the emerging social scientific research about the SBNR members of our society in order to understand the ways they frame practices such as immunization and thus the ways health workers might interact with them in an informed, respectful, and pragmatic manner. Cultural Reasons Now that I have addressed the rapidly changing religious backdrop against which one might understand the explicitly religious claims made about vaccines in Canada, I can turn my attention to a discussion of the broad cultural shifts underlying the growth of the more common cultural forms of vaccine hesitancy and rejection. Let us consider first what we might call the crisis of trust. While the vast majority of people in our society accept the value of vaccines, it is clearly not the case that each person within this large vaccine-­positive cohort – over 80 per cent of the population, in the case of most vaccines (UNICEF/WHO 2012) – has carefully or critically assessed the empirical evidence for and against vaccines. Instead, most of us might be said to “farm out” our critical assessment to other people. To put it another way, most of us rely upon the vaccine-positive consensus among the overwhelming majority of clinicians, public health officials, medical researchers, journalists, and the general public (Benin et al. 2006; Streefland et al. 1999; Tickner et al. 2006). Of course, most people would extend the same trust to structural engineers, pilots, electricians, emergency room physicians, and those we entrust to ensure our water is potable, to list just a few professions. After all, most of us simply lack the time or expertise to evaluate (much less reproduce) the services these professionals provide. To the extent that one might be said to have “faith” in a pilot, for example, such faith is a form of trust that the pilot has been thoroughly trained, understands the plane’s mechanics, and is prepared to manage in an emergency. While we are not able to rationally assess the structural integrity of airplanes and the training regime of our pilots, most of us assume (usually correctly) that someone else has ensured that these both comply with standards that are established by educated authorities and

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are upheld by the legal injunctions of a state which serve the best interests of its citizens. We are all enmeshed in a web of trust; for a wide range of reasons, some of us are more and some of us are less critical (or even suspicious) about the various filaments of this web (see chapter 2 by O’Doherty, Smith, and McMurtry and chapter 3 by Brunk in this volume; cf. Biss 2014; Gardner 2008). Although it is difficult to imagine a world utterly without confidence in this web – a world in which, presumably, one would never board a plane, consume food from a grocery store, take an elevator, or go inside a building – clearly trust can become strained or broken due to an individual’s moral turpitude (as when a schoolteacher sexually assaults children), careless errors (as when a plane crashes because a pilot does not confirm that the plane has sufficient fuel), callousness (as when a physician ignores a patient when she or he is describing a complaint), or unintended consequences (as when a medication is shown, years after its introduction, to be carcinogenic). Vaccines are the products of such a complex multistakeholder system – involving clinicians, academics, administrators, private investors, lobbyists, front-line health care workers, adverse effect monitors, patients, policymakers, public opinion makers, etc. – that it is difficult even for advocates to address the many questions that plague vaccine hesitant individuals. So, while religious and cultural critics of vaccines may sometimes rely on certain kinds of oftenfaulty heuristics (Caulfield 2015) it is also the case that in order to make their case, vaccine advocates necessarily rely on certain intellectual shortcuts, rules of thumb, and webs of trust that are designed to promote vaccination as a routine aspect of a healthy lifestyle, as well. More than that, it is in the nature of any broadly accepted claim (e.g., climate change, evolution, sewage treatment, the merits of fluoridation) that the need to think seriously about each aspect of the overall claim is not seen as incumbent upon all educated citizens; that is precisely the purpose of what we might call expert-dependent consensus – to let us attend to other issues in our lives while the experts manage otherwise complex decisions. As other authors in this volume demonstrate, well-publicized examples of trust-diminishing incidents – such as the contamination of some lots of polio vaccines in the early years of the polio eradication campaign,14 the Tuskegee syphilis experiment,15 Guillain-Barré syndrome that is sometimes linked to influenza vaccinations,16 the CIA’s approach to locating Osama bin Laden, and evidence that challenges physicians’ claims that their treatment is not influenced by pharmaceutical companies (Grande, Shea, and Armstrong 2011; Shnier et al. 2013) – have combined with broader epistemological shifts around the nature of truth to create powerful concerns about the trustworthiness of vaccines and the

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broader system that produces and promotes them (Biss 2014; Black and Rappuoli 2010).17 Moreover, in recent years there has been a growing concern over the commodification, instrumentalization, and securitization of human life, well reflected in the saturation of our popular culture with the sorts of narratives one finds in The Truman Show (1998), The Matrix (1999), Minority Report (2002), The Hunger Games series (beginning in 2008), Ex Machina (2015), and Ray Kurzweil’s notions of “transhumanism” and an approaching “singularity” in which artificial intelligence will challenge human control over the world. These books, films, and ideas might be mostly fictional, but their success reflects a free-floating anxiety that governments or major corporations – especially those related to science and new technology – have an interest in exerting domination over both private and public aspects of human life in order either to protect a neoliberal status quo or to quell dissent. These cultural products reveal a great deal about the dystopic futures some of us fear from a society in which science and technology seem so difficult to comprehend and in which the global reach of corporations has never been more extensive. Concerns about vaccines in particular must thus be understood as a feature of a society in which citizens and critics do not fully trust that physicians, government representatives, and those who profit from the sales of vaccines can be expected to prioritize individual and public health over political and economic gain, investigate adverse effects immediately, and adequately compensate unintended victims of (albeit extremely rare) adverse effects. This brings us to a second closely related crisis: the crisis of truth. In the decades following the Second World War – but especially after the 1960s – alternative sexual identities, political formations, aesthetic norms, and approaches to rationality gained new credibility. With the end of the Cold War and the nearly simultaneous rise of the Internet, many of the barriers to communication and the full flowering of these subaltern realities were removed. Arguably, this shift away from what is framed as a monolithic Enlightenment era “positivism” regarding the nature of truth and knowledge and towards an approach that is more appreciative of “other ways of knowing” is part of the profound cultural changes associated with feminism, multiculturalism, science (Einstein’s theory of relativity is often cited, even if incorrectly), civil rights struggles, the sexual revolution, postmodern philosophy, and postcolonial political upheavals, to name just a few of the tributaries that have created this river. Obviously, our society is not an egalitarian paradise –class, racial, sexual, religious, and gender hierarchies and discrimination clearly continue to exist, and some would argue that the Internet simply created a new means of exerting social and political control. However, there is no denying that during the last several decades we have witnessed the destabilization of those discourses associated

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with conventional forms of science, politics, race, sexuality, religion, and personal identity and the proliferation of new and often-liberating discourses of identity and truth. So, when an undergraduate says – as if he or she is stating the obvious – that everything is “relative”; that there are many “ways of knowing”; that “truth claims” merely reflect particular political agendas that privilege a certain gender, region, or class – he or she is articulating some of the key insights that emerged from these post-1960s emancipatory movements. Many readers will be supportive of the broad changes that resulted from the legal, political, and social challenges to regressive and rigid regimes of truth and power. Some readers will be relieved to see “science” or “Big Pharma” squirming a little under the scrutiny of public doubt. However, the celebration of other ways of knowing has had the perhaps inevitable effect of calling into question vaccines themselves as well as forms of reasoning generally associated with science in the West. Hence, the crisis of truth. It is no accident that the Oxford English Dictionary named “post-truth” as its word of the year for 2016. After all, the U.S. election that year provided ample evidence that the basic veracity of public political or scientific claims (about issues ranging from climate change to vaccine science to a candidate’s recorded assertions) was of far less importance than hyperbole and appeals to emotion.18 This approach to truth has led to a decline in the prestige of the life sciences (along with other forms of social and intellectual activity) and has many explanations and precursors (Bramadat and Kaufert 2013). One of the results of these changes is that many people in the West now approach their own health and their interactions with medical practitioners in an unprecedented manner (Coward and Ratanakul 1999). Certainly this new approach is intractably bound to the rise of the Internet and the relativism and subjectivism that are such key features of contemporary cultural life, as more and more people feel empowered to conduct “research” into their ailments, treatment protocols, and pharmacological interventions. As Kata (2010) explains, “An estimated 75–80 per cent of [Canadian and American] Internet users search for health information online. Of these users, 70 per cent say the information they encounter online influences their treatment decisions” (1709; cf. Betsch et al. 2012; Wolfe, Sharp, and Lipsky 2002). As we witness the growing reliance on the Internet not merely as a resource for patients in their reflections on their own health (and in their discussions with medical professionals) but as a kind of unaccountable and omniscient source for self-diagnosis and the affirmation of pre-existing hunches and subcultural idiosyncrasies, we see a growing chasm opening up between the old and new approaches to personal and public health.

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There are many beneficial features of this cultural shift, of course, as those communities and individuals committed to “other ways of knowing” now feel less marginalized by what they might have perceived as an imperious health care establishment. However, the unregulated nature of the Internet creates obstacles for health care workers who are – perhaps for the first time in history – expected to collaborate with patients whose views of medicine have been formed by the anxieties, half-truths, rumours, unfettered commercialism, and conspiracy theories that coexist on the Internet with scientifically credible data and theories (Scullard, Peacock, and Davies 2010). As Poland, Jacobson, and Ovsyannikova (2009) observe, “In today’s environment of hyper-mass communication and in the absence of current and immediate infectious disease threats perceived by parents, a ‘good mother’ does her homework and starts from the point of concern about vaccine side effects” (3241; cf. Betsch et al. 2012). Unfortunately, the often-idiosyncratic and private context in which parents perform this proverbial homework, the sheer volume of (both well-established and fallacious) evidence now publicly available, and the power of local subcultures and cliques to override information that one might expect to be viewed as more authoritative, makes it difficult for individuals to understand and assess the evidence they find on the Internet. As such, their efforts to arrive at a reasonable conclusion about a health issue will often be frustrated. Healy and Pickering (2011) note that The power of anecdotal experiences or “sound bites” supplemented by visual imagery also should not be underestimated. A 30-second clip of a child allegedly damaged by vaccines exploits every parent’s worst fears and is more compelling than clips that detail the reduced incidence or elimination of infectious diseases of which many parents have never heard, much less seen. These impressions supplemented by stories parents may have heard or read on the Internet may become more memorable and lead parents to believe that vaccines are harmful. (129)

Clearly, the capacity – more recently framed as a right – of an individual in a liberal democratic society to refuse to participate in a vaccination program promoted by the state (and involving multinational pharmaceutical corporations) is part of the late twentieth-century increase in personal autonomy. As such, it is not surprising that legislators and vaccine advocates are very cautious about any gesture or policy that appears to abrogate this liberal freedom (Salmon et al. 1999, 50; cf. Streefland 2001, 164). As an indication of the suspicions that advocates face, consider the following well-articulated critique of vaccination programs that was expressed in a brief to the Ministry of Health in Ontario by the anti-vaccine group, the Vaccine Risk Awareness Network (now Vaccine Choice Canada):

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Given the conflicting opinions, many notable medical failures, and the persistent abuse of many medical procedures, we are astonished at the unquestioning and servile attitude which the public has towards the medical profession. But then this is not so amazing once one considers the similar, unwarranted confidence in the ability of government to regulate and direct so many areas of our lives, despite the long list of its blunders from urea formaldehyde foam insulation to mandatory chest x-rays … In our belief in human freedom and in Jefferson’s thought that truth can stand by itself we are willing to accept the risk that there will always be some in society who are irresponsible and will commit serious errors. But those who do not have such confidence in the individual and who do not really believe in human freedom insist on taking care of all of us for our own good. They run the far greater risk, however, by imposing their “truths” on everyone. For if the government errs and then compels us all to act in a prescribed fashion, then we are all compelled to err. Such despotism has no place in our time. (VRAN 1984; cf. VRAN 2005)19

The basic processes I have outlined above are succinctly captured in the underlying anxiety that the despotic state would “impose” its view of medical “truths” on a “servile” public in which, after all, there are many others who promote their own, better, truths. As if anticipating the emergence of a “post-truth” society, Kata (2010) remarked, In postmodern society, the Internet as the dominant medium has “blown away the doors and walls of the locked library.” With the large number of self-styled experts online, even the most respected vaccine authority’s advice becomes just another opinion. Everybody can be considered an expert to some extent. Therefore, appealing to scientific and medical authorities is not as convincing as it once was. (1715)

Furthermore, as the author of Deadly Choices, Paul Offit (2011), observes, it is important to note that vaccine hesitancy and rejection are not confined to those with less education: “Resistance to vaccines is found in the upper-middle class among parents who are college- and graduate-school-educated, likely to use the Internet to make healthcare decisions, and fully believing that they, too, can become experts in an information age” (124; cf. Akis et al. 2011, 1171; Guay, Dubé, and Laberge, chapter 6 in this volume). There have been historical antecedents to today’s vaccine-hesitant groups, where doubt has been expressed about immunization programs in which a state, working with scientists, pharmaceutical companies, clinicians, and educational institutions, makes it a priority to vaccinate an entire population

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against a particular disease, thereby opting to expose all individuals to a usually small amount of immediate physical discomfort and also a very small number of potential adverse side effects (Guay et al. 2009). Nevertheless, since most mass vaccination programs are part of the old “top-down” approach to health and science (cf. Streefland 2001, 160), they are clearly vulnerable to fears emanating from both crises of truth and trust. The emergence and growth both of critiques of conventional reason in general and vaccines in particular was predictable (cf. Offit 2011). Arguably, the responsibility for the two crises – of trust and truth – does not lay solely at the feet of a duped or benighted public; some of the scepticism (even the paranoia) that characterizes vaccine-hesitant discourse is a function of the errors of vaccine science and, at times, the attitudes of clinicians, researchers, public health advocates, and other proponents of the scientific consensus that has emerged around vaccines. As Bettinger and MacDonald (chapter 8) and Naus, Law, and Rinfret (chapter 9) argue in this volume, tragic errors have been instrumental in creating the sort of system many of us enjoy today; it is harder to see a positive outcome in the paternalism about which the critics so regularly complain (see Roberts and Mitchell, chapter 10 in this volume; cf. Biss 2014). The sharing of responsibilities for the current impasse is not itself a solution to the problem, but it is nonetheless an important step forward. Religious and Cultural Reasons: Similarities and Differences Now that I have provided brief sketches of Canadian religious trends and the broader cultural shifts that might lead people to eschew vaccines, I would like to question an assumption underlying these two sections and broader debates around vaccines. Clearly, it is often expedient to distinguish analytically between “religious” and “cultural” reasons for vaccine hesitancy and rejection, and indeed, most of the authors in this book operate according to this distinction. However, it is important to consider not just how these reasons differ but also how they are related. I want to speculate that there are common social and psychological forces at work within vaccine-hesitating or rejecting subcultures that we usually say are motivated by cultural claims and those we say are motivated by religious claims. While the groups that interest us in this book might appear to be united merely by a particular practice (rejection of or hesitancy about vaccines) that can be rooted in a number of quite distinct subcultures, one arguably also sees one additional family resemblance. That is, many of these groups reject or are at least suspicious about the formidable if not absolute scientific consensus around vaccines (specifically) and scientific reason (generally). Many favour

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some non-scientific (non-evidence based) or extrarational explanation for the relationship between illnesses and individuals.20 Space does not permit a full consideration of the competing schools of thought within the philosophy of science regarding the definitions of science or the scientific method. Here I am using a conventional definition according to which a scientific explanation (in this case, for the safety and efficacy of vaccines) would entail falsifiable hypotheses and the use of repeatable assessments in which conventional notions of evidence are employed and in which the hypotheses are subject to revision, rejection, or confirmation as a result of empirical evidence. On the basis of this general operational definition of science, Seth Mnookin (2012), author of The Panic Virus notes, “What nagged at me, I realized, was the pervasiveness of a manner of thinking [among vaccine sceptics] that ran counter to the principles of deductive reasoning that have been the foundation of rational society since the Enlightenment” (11; cf. Offit 2011). In part, many of us are interested in understanding how the pervasive “manner of thinking” Mnookin describes might be reimagined so we might in fact engage its proponents more effectively. In the medical and public spheres, debate continues with regard to the human papillomavirus (HPV) immunization programs (see chapter 10 by Roberts and Mitchell in this volume) and the necessity of regular influenza vaccines for healthy adults (see Osterholm et al. 2012). However, a strong consensus around the value and safety of the vaccines against illnesses such as polio, measles, diphtheria, and rubella has clearly emerged among those familiar with the scientific record (as a number of the other contributors to this volume explain in greater detail). Nonetheless, as Brunk, O’Doherty, and others in this volume indicate, some of the concerns people have about vaccines emerge out of ordinary, entirely justifiable, rational concerns about risk, adverse effects, the ingredients of vaccines, the medical value of alternative therapies, and the influence of pharmaceutical corporations, just to list the most common topics of concern. However, what interests Mnookin – and the members of our research project – is what happens when most of these rational concerns appear to be answered by epidemiologists, infectious disease specialists, public health representatives, and clinicians, yet hesitancy or rejection remains. To understand the persistence of deep anxieties in many subcultures in our society even after such questions have been answered, we need some explanations that frame persistent beliefs in more subtle ways. I would like to suggest that within most anti-vaccine subcultures, one also finds suspicions and misgivings that are rooted in what we may – in general – call spiritual, magical, or otherwise extrarational thinking and experience. Notably, such forms of thinking and experience are also key constituents of the religious lives of the majority of people.21

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By way of a reflection on the analogy we might see between implicit or explicit religious sensibilities and anti-vaccine discourses, let us consider perhaps the most famous example of a non-religious – that is to say, a cultural – critique of vaccines. When Andrew Wakefield suggested in a 1998 article published in The Lancet that the measles, mumps, and rubella (MMR) vaccine was “implicated” in the emergence of autism, his claim became an important pillar in the vaccine-hesitant and rejection subcultures (Gerber and Offit 2009). This claim was couched in scientific language that would have been opaque to most nonspecialists, but, nonetheless, the article became the scientific validation of an initially extrascientific argument that had been advanced by other means – ­usually anecdotally, by distraught parents who noted that their children developed symptoms of autism not long after receiving the MMR vaccine (Kata 2010, 1713). Other media and renegade medical figures joined (or had already been attached to) the anti-vaccine subcultures (Mnookin 2012; Offit 2011), with Wakefield’s research as one of the main buttressing forces for their argument. However, a few years after this pivotal publication, Wakefield’s methods, integrity, and conclusions were revealed to be spurious, and in 2010, The Lancet took the very uncommon step of retroactively retracting his article.22 Moreover, Wakefield’s medical licence was revoked due to his fraudulent and unethical practice of medicine. Given the value so many people placed on his arguments, one might assume that such an event would lead to the collapse of the subculture committed to the MMR-autism claim. However, his theory had already seriously damaged the public’s confidence in vaccines, and the community or set of subcultures for which Wakefield’s theory provided such validation did not disappear. Indeed, Wakefield was granted martyr status by many (Dominus 2011; Kata 2010, 1713), and the argument against him and his early (and entirely specious) studies of the MMR-autism connection was framed as another example of the medical establishment protecting entrenched medical and pharmacological orthodoxy (MacDonald 2007; cf. Poltorak et al. 2005).23 Consider, as well, the power of extrarational sensibilities in an alternative health subculture closely linked with vaccine rejection and hesitancy. Homeopathy emerged at the end of the eighteenth century and has become an important part of the alternative (or complementary) medical movement over the past several decades (Benin et al. 2006; Ernst 2002; Zuzak et al. 2008). The practice involves the consumption of substances that are diluted to such a degree that, in some cases, not even a single molecule of the original substance can be detected (Ernst 2005); bottles of these minute dilutions are then struck against a surface (an act called “succussion”) to increase potency. Working on the principle that “like cures like” and the notion that some effective curative property remains in the solution (see Dubé, Sauvageau, and Gagnon, chapter 7 in this volume),

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homeopathic patients consume small quantities of diluted substances that would at ordinary strength cause symptoms similar to those demonstrated by the patients. As Benin et al. (2006), Ernst (2002), Zuzak et al. (2008), and Dubé, Sauvageau, and Gagnon (chapter 7 in this volume) explain, there is a strong correlation between vaccine hesitancy and commitment to homeopathy – largely because homeopaths and their patients believe that their “natural” remedies will suffice to protect them against infections or will adequately manage their symptoms if they do get ill. The bad news for homeopaths and their patients came in 2005 when a metastudy of empirical assessments of homeopathy was published in The Lancet that demonstrated no positive (i.e., non-placebo) effect of the therapy (Shang et al. 2005). However, Dubé, Sauvageau, and Gagnon’s chapter in this book (chapter 7), as well as any casual consideration of the Internet – not to mention any attentive eavesdropping on the water cooler discussions of one’s friends and neighbours – will reveal the ongoing public interest in homeopathy as a legitimate complementary treatment.24 It is worth noting that these two stories in The Lancet were broadly covered – with their scientific data thus rendered fairly digestible for laypeople – by reputable mainstream news sources (including the CBC, the BBC, the Globe and Mail, the New York Times, etc.). As well, Wakefield, homeopaths, and other members of these communities articulated (and continue to articulate) their claims quite openly.25 The fact that quite convincing empirical evidence has not consigned either homeopathy or the alleged MMR-autism link to the proverbial “dustbin of history” is, on the surface, very puzzling (Hobson-West 2003). Fortunately, scholars interested in religion have been probing related phenomena for decades. In 1956, Leon Festinger, H.W. Riecken, and S.W. Schachter published When Prophecy Fails: A Social and Psychological Study of a Modern Group that Predicted the End of the World, the opening argument in a complex literature (e.g., Dawson 1999; Dein 2001; Tumminia 1998) that may shed some light on the processes at work in vaccine hesitancy and refusal. What happens, these social scientists asked, when the world does not end on a particular day or when the messiah does not arrive when prophesied? Festinger, Riecken, and Schachter (1956) reflected on the ways religious groups and individuals decrease the “cognitive dissonance” of objective disconfirmation of their claims and hopes. While these authors claimed some members might – in order to address such cognitive dissonance – actually increase their personal commitment to these potentially imperilled groups and might indeed increase their proselytiz­ ing activities, subsequent analysts (Dawson 1999; Snow and Machalek 1982) have cautioned that we often overestimate the kind of crises such contradictory empirical evidence would represent for regular members. In fact, members of

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these subcultures simply may not be as troubled by disconfirming evidence as academics, public health advocates, and physicians might assume (or wish). Inasmuch as such troubling evidence is noticed – as evidence or at all – in many cases, the insider discounts it as irrelevant or simply indicative of the interests of a dominant group determined to hold on to its power, or – as we see in the story of the public health worker (and parent of a severely autistic child) in Brunk’s chapter in this volume (chapter 3) – an insider cannot or will not allow evidence to dislodge a value, anxiety, or a prior emotional commitment. As such, debunking is often ineffective because it generally assumes that simply challenging erroneous claims (often with ridicule) and providing accurate information will suffice. Research (Snow and Machalek 1982) into the “suspension of disbelief ” that is supposedly evident in the way individuals justify their immersion in religious movements, especially when the “plausibility structures” of these traditions are threatened, suggests what is still for many a challenging conclusion: that it is a kind of intellectual conceit to assume that disbelief and doubt are the normal operating states of the human mind and that one must suspend this natural state in order to belong to an atypical cultural or religious movement or accept claims for which there can be no empirical validation. In fact, very few people could be said to encounter the world in a consistently sceptical or, for that matter, analytical manner. Far from needing to set aside our natural ironic and sceptical approaches in order to believe something (whatever that something might be), and far from relying on a cool assessment of data, theories, and hypotheses to determine which medical claims we should accept and which we should reject, most of us rely on often-faulty intellectual shortcuts – or the opinions of others – to assess evidence. To put it another way, most of us have to suspend a pre-existing belief or value of one kind or another to adopt a doubtful attitude or another form of belief (cf. Haidt 2012; Latour 2009). Indeed, it is probably most precise to say that people regularly vacillate between rational and extrarational explanations or world views as means to explain not just complex personal experiences but also apparently simple scientific matters. Consider the number of U.S. Christians who believe in basic tenets of Christianity as well as reincarnation (22 per cent);26 people who believe in the “young earth” hypothesis (i.e., that the earth is less than ten thousand years old), angels and demons, as well as the importance of scientific approaches to medical care and basic engineering (Bramadat 2000); people who believe that “everything happens for a reason” (Thagard 2010) and yet claim to eschew religious world views; and people who employ both “folk remedies” as well as biomedicine (Moore and McClean 2010). Not only does the movement between various worldviews seem to be the rule rather than the

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exception, but such mobility rarely seems to provoke existential crises. Truth, at least as it usually narrowly defined by a certain liberal intellectual and scientific consensus, just matters less than one might imagine (or prefer). The fact that many of us are surprised by this is itself peculiar given the growing evidence of the profound roles played by prerational, irrational, inchoate, contradictory motivations in our convictions and decisions (Ariely 2008; Bramadat 2000; Gardner 2008; Haidt 2001; Haidt 2012; Hall 1997; Hobson-West 2003; Kata 2010; Spier 2001), not to mention the growing evidence that we live in an increasingly “post-truth” society. The reliance of vaccine advocates on more accurate data to promote their perspectives reflects a particular set of quite legitimate convictions about, and a particular faith in, a certain kind of scientific reasoning (Dubé et al. 2013; Hobson-West 2003; Kata 2010, 2012). Conversely, the frustrations some clinicians, scientists, and public health workers have about vaccine hesitancy and rejection grow out of an overestimation of the power of a particularly narrow form of reasoning and an underestimation of the power of the non-cognitive dimensions of religiosity, and indeed, of all deeply held convictions. If it is difficult and perhaps futile to expect sober scientific rationality to persuade probably the majority of religious people to change their views on and feelings about their most deeply held religious sensibilities (such argumentation has so far failed in these efforts), this is because the rational dimension of most religious lives is just one among many, and is often not the most important. This does not mean that religious insiders are childlike or ignorant dupes; it just means that finding fault with either religious or anti-vaccine communities on rational or evidentiary grounds alone will not create in most people the kind of existential or intellectual crisis one might expect.27 How might vaccine advocates and clinicians incorporate the argument outlined above into their daily engagements with vaccine-hesitant or rejecting patients? What if the stated rational justifications for an individual’s or a community’s position on vaccines are actually expressions of other irrational or extrarational forces? One response would be that if, for example, a subculture claims that a particular vaccination leads to sudden infant death syndrome (SIDS), it is crucial to determine the social discourses (Kata 2010, 1715) used to define and bind the community. Moreover, it is important to take seriously the misgivings individuals and groups have about vaccines, medical professionals, capitalism, and science (to name just some of the foci of the concerns). If the group is unified not mainly by particular and testable scientific claims about SIDS but actually by a deep commitment to homeopathy, a visceral aversion to the “medicalization” of childbirth, the devastating emotional experience of losing a particular child to SIDS, a general (and quite common) faith

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that everything in the world “happens for a reason,” and perhaps the shrewd marketing efforts of a charismatic leader in the alternative health movement, then vaccine advocates need to be especially mindful of the complex extrarational forces at work (cf. Healy and Pickering 2011; Gardner 2008). In a case in which the group is influenced by so many forces, merely presenting to this community what appears to scientists to be definitive evidence that the vaccine-SIDS link is not supported by medical evidence is unlikely to address their root concerns. As others (see chapter 11 by François D. Boucher in this volume) in this book suggest, the best clinical response to vaccine hesitancy and rejection rooted in complex clusters of motivations is likely to be the effort to cultivate a safe and trusting relationship with the patient and to be open to discussing the wide range of variables involved within the context of an enduring and perhaps protracted clinical interaction. For some clinicians, this will not be easy, but it appears to offer one of the best means of ensuring that the patient remains engaged in a conversation about important preventive interventions (Benin et al. 2006; Brownlie and Howson 2005; Leask et al. 2012; Omer et al. 2009). The core question of this chapter is how we might explain the way individuals and communities (or subcultures) interpret what appears to be quite credible scientific evidence that negates their central beliefs and intuitions. Surely some explanation for the endurance of these disproved theories might be found in widespread parental anxieties about the well-being of children in an era in which our environment seems under siege; perhaps an additional explanation would relate to the misinformation one finds on the Internet, and perhaps we might also attribute the mistrust evident in these movements to negative experiences some individuals have had with particular medical practitioners. Nonetheless, the fact that clearly articulated evidence presented from several angles by journalists, scholars, physicians, and public health advocates has little or no effect on such individuals and movements – which by all accounts seem to be growing – suggests that we need to be cautious about overestimating the value people place on conventional evidence-based reasoning. I would suggest that anthropologists, philosophers, historians, psychologists, and scholars of religion may provide some insights into the ways people sustain deep convictions and lifestyles, rituals, and habits that are also only minimally affected by – or that very creatively engage with – ordinary scientific evidence. In fact, bringing into the foreground those heuristic devices on which vaccine advocates themselves rely in both their personal and professional lives might humanize them to vaccine critics, and it might even thereby reduce the impasse that often characterizes relations between the two “sides” of the debate. As well, social scientists may illustrate the similarities

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between vaccine-critical cohorts and religious communities, most of which are not ­evidence-based in the narrow sense. Finally, experts in the study of religion might also demonstrate how proponents of apparently radically dissimilar perspectives (e.g., fundamentalist Christians, liberal Muslims, and atheist feminist scholars of religion) might nevertheless engage in fruitful discussions about religious and moral matters of common concern. Such constructive engagements can – at least in theory – happen in universities and elsewhere in civil society and could provide a kind of model for the way clinicians and public health representatives might maintain ongoing relationships with vaccine-hesitant and rejecting patients and parents. I would suggest that in the MMR-autism and homeopathy case studies, one witnesses not simply forms of conventional medical scepticism – a form of questioning that is, ideally, inherent to clinical settings and the scientific method – but the concatenation of the crises of truth and trust with increasingly popular alternative, extrarational approaches to the body, science, and truth itself that are destabilizing medical authority. Current questions around both particular medical practices (such as immunization) and evidence-based scientific reasoning, more broadly, clearly reflect a society in which people have achieved an unprecedented freedom to seek out their own personal, spiritual, and scientific truths and cultivate their own sense of authenticity (Taylor 1992). The relatively new social changes associated with these achievements have created fertile ground for suspicions about conventional approaches to evidence, authority, and reason that are at the heart of “religious” and “cultural” vaccine hesitancy and refusal. Conclusion Ordinarily, shifting between scientific and religious explanations has salutary psychological but very limited public consequences. Such fluidity enables individuals to employ the distinctive narratives rooted in science, technology, religion, or spirituality to help them adapt to often-abrupt changes in their lives. Nevertheless, if one agrees with the arguments presented by Naus, Bettinger, MacDonald, and others in this book, then vaccine hesitancy and rejection are not merely examples of harmless and personally useful vacillation between scientific and extrarational perspectives on human life. Arguably, the gradual decline in protection of both individuals and the population that results from increasing support for vaccine hesitancy and rejection is of significant public health – and therefore political – concern (De Serres et al. 2013; Oostvogel et al. 1994; Omer et al. 2009; Spier 2001).

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The complex social forces I have sketched in this chapter and in the introduction to this volume – including the heterogeneity of the groups, the influence of a certain form of relativism, the embattled authority of science and medicine, the proliferation of scientific and pseudoscientific diagnostic and support websites, the growing autonomy of patients, and the quasi-religious or extrarational nature of some vaccine-critical claims – have, together, made it difficult to determine both the nature and extent of the problem, as well as the best ways of addressing it (Mnookin 2012; Kata 2010). Many vaccine advocates are concerned that we may be witnessing conditions for a “perfect storm” in public health that could have devastating effects on members of the public whose immune systems are not yet developed (infants) or are currently compromised due to age, ongoing medical treatment, or the fact that one or another childhood vaccination might not have conveyed the immunity they had anticipated. The situation is difficult, but it is no less urgent for its complexity. Even when incidents that do not appear to have an explicit connection to formal religious institutions or traditions are interpreted in secular periodicals, religious rhetoric is quite regularly part of the discussion. For example, in an influential 2011 New York Times Magazine article on the Wakefield case, journalist Susan Dominus refers to Wakefield’s “post-career apocalypse,” “cult status,” and “sense of mission.” She mentions his followers’ “faith in his theory” and sense that he is a “martyr.” She comments that “to the anti-vaccine community, Wakefield is Nelson Mandela and Jesus Christ rolled into one.” As well, she remarks that “he is the kind of religious leader who is a true believer but who relies on the occasional use of smoke and mirrors to goose the faith of his followers” and concludes her essay with the observation that “with a little effort, you can believe almost anything.” Although religion in the narrow institutional sense was not a major factor in Wakefield’s research, popularity, or the critique levelled against him by scientists or journalists, the whole scandal seems almost to require the religious explanations and metaphors in evidence above. This is arguably not simply a reminder of the religious roots of North American culture but also an indication that the way Wakefield’s supporters dealt with challenging scientific evidence resembled, in many ways, what social scientists have led us to expect from sincerely committed religious people faced with contradictory evidence. The distinction between cultural and religious forms of hesitancy and rejection might be analytically convenient, but it might also prevent a consideration of some of the commonalities between the two that would have significant implications for our understanding of the current and rather troubling doubts about vaccines.

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NOTES 1 Although the religion-spirituality dyad is an important part of most popular definitions of religion, most forms of supposedly individualistic spirituality are, in practice, closely related to institutions of one kind or another. Furthermore, virtually all formal religious institutions claim to be designed to deliver, promote, or protect those putatively distinctive, individual spiritual experiences. Finally, the concepts are not only dialectically related in an abstract sense, but in the daily lives of religious individuals, people are engaged in activities that invoke both forces. 2 For a comparison with U.S. phenomena, see “Religious Service Attendance,” Association of Religion Data Archives, accessed 6 January 2017, http://www.thearda. com/quickstats/qs_105.asp. I would like to thank my colleague Sarah Wilkins-Laflamme for supplying and helping to explicate the data in this paragraph. 3 See the Oxford English Dictionary’s official statement regarding “post-truth” as their word of the year, 8 November 2016, https://en.oxforddictionaries.com/ word-of-the-year/word-of-the-year-2016. See also Macdonald (2016) and Shellnutt (2016). 4 Indeed, when I take informal and anonymous polls of my undergraduate students, some interesting patterns are evident that reflect some of the shifts underway in the broader society: only about 20 per cent have been raised within a comprehensive formal religious world view, and 50 to 60 per cent would say they are “nones.” Roughly 85 per cent of the nones, however, engage in practices they describe as “spiritual” (yoga, meditation, prayer, etc.), and about 60 to 70 per cent would agree with the statement, “I am spiritual but not religious.” 5 The Chinese religious cohort in Canada is quite large, but they are not adequately captured by the current statistical techniques used by Statistics Canada. As such, individuals whose religious lives might involve filial piety; ancestor veneration; occasional visits to shamans; Chinese medical practitioners; and Christian churches; and offerings made to domestic and communal statues of the Buddha often end up identified as Buddhists, Christians, or as having no religion. Such categories do not adequately describe these people’s religious lives. Since there are over 1 million Canadians of Chinese descent (many having arrived relatively recently), it is regrettable that we have yet to find a means of describing and measuring their often quite complex religious lives. See Paper, Paper, and Lai (2009). 6 See College of Physicians of Philadelphia (2017). 7 On similar assertions, see Kennedy and Gust (2008), Offit (2011), Oostvogel et al. (1994), Ruijs et al. (2011), Spier (2001). See also “Vaccines: A Religious Contention,” on the Vaccine Risk Awareness Network, accessed 7 January 2017, http:// vaccineriskawareness.com/Vaccines-A-Religious-Contention-.

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8 See “Infant Immunization The Catholic Parents’ Guide,” by Donald J. Henz, accessed 7 January 2017, https://cogforlife.org/catholicguide.pdf. Henz is associated with the Children of God organization, which describes itself as the “pro-life world leader in the campaign for ethical vaccines, medicines and consumer products.” 9 Jegede writes, In an article reported by News24.com, a South African online news Web site, Sule Ya’u Sule, speaking for the governor of Kano, is quoted as saying: “Since September 11, the Muslim world is beginning to be suspicious of any move from the Western world … Our people have become really concerned about polio vaccine.” In the same article, Datti Ahmed, a Kano-based physician who heads a prominent Muslim group, the Supreme Council for Sharia in Nigeria (SCSN), is quoted as saying that polio vaccines were “corrupted and tainted by evildoers from America and their Western allies.” Ahmed went on to say: “We believe that modern-day Hitlers have deliberately adulterated the oral polio vaccines with anti-fertility drugs and … viruses which are known to cause HIV and AIDS.” (2007, 418) 10 See “How the CIA’s Fake Vaccination Campaign Endangers Us All,” Scientific American, 2013, accessed 7 January 2017, https://www.scientificamerican.com/ article/how-cia-fake-vaccination-campaign-endangers-us-all/; cf. Saeed Shah, “CIA Organized Fake Vaccination Drive to get Osama bin Laden’s family DNA,” The Guardian, 11 July 2011, https://www.theguardian.com/world/2011/jul/11/ciafake-vaccinations-osama-bin-ladens-dna. 11 See Grabenstein (2013). The church’s approach to immunization is somewhat complex: see Vitello (2010); see also “Cultural Perspectives on Vaccination,” The History of Vaccines, last modified 15 December 2014, http://www. historyofvaccines.org/content/articles/cultural-perspectives-vaccination; “What Is Christian Science?” Christian Science, accessed 8 January 2017, http://www. christianscience.com/what-is-christian-science; “Outbreak of Measles Among Christian Science Students – Missouri and Illinois, 1994,” Centers for Disease Control and Prevention, 1 July 1994, https://www.cdc.gov/mmwr/preview/mmwrhtml/00031788.htm. 12 Regarding the connections between Canada’s immigration policies and our immunization levels, it would be wise to bear in mind Streefland’s (2001) observation: “Increased migration and communication imply that meanings and explanations pertaining to health issues which prevail in the global peripheries are not held in isolation, but are the outcome of processes of global diffusion and exchange, and local interpretation. In the case of immunization this is clear when we think of health education messages which may be prepared in Geneva or

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Atlanta, reach mothers at the periphery by way of interactions with urban trained health workers, and are subsequently interpreted to fit indigenous theories of contagion and infectious disease” (162). See Bibby (2011) and Davison (2013). See also: “‘Nones’ on the Rise,” Pew Research Center, 9 October 2012, http://www.pewforum.org/2012/10/09/nones-on-the-rise/. This study found that 37 per cent of Americans would be SBNR. See the discussions of the “Cutter Incident” described in by Monika Naus, Barbara Law, and Aline Rinfret in chapter 9 of this volume. This story concerns an experiment in which poor African Americans with syphilis were not given penicillin, even when that would clearly have been the effective treatment. Instead, the disease was allowed to run its natural course over forty years (1932–72) before someone alerted authorities to the ethical transgressions involved. Although this dark chapter in the history of medicine does not involve a vaccine, the experiment was emblematic of a particularly “instrumental” view of human life and thus is often cited by critics as a reminder not to trust doctors to pursue the best interests of their patients; some researchers have suggested that this story has led to lower interest in vaccination among African Americans (Moutsiakis and Chin 2007). The U.S. Centers for Disease Control (CDC 2016) writes, “There may be a small increased risk of Guillain-Barré Syndrome (GBS) after inactivated flu vaccine. This risk has been estimated at 1 or 2 additional cases per million people vaccinated. This is much lower than the risk of severe complications from flu, which can be prevented by flu vaccine.” See also “Guillain-Barré syndrome and Flu Vaccine,” last modified 16 October 2015, https://www.cdc.gov/flu/protect/vaccine/guillainbarre.htm. The common refrain one hears from vaccine supporters is that while no one would trivialize the suffering of those who were injured by the errors or injustices of the modern history of medicine or vaccines, most (though, by definition, one could not say all) public health clinicians and vaccine scientists have acted in good faith; on balance, the number of people negatively affected by these incidents is quite small when compared to the millions of lives that have been saved by vaccines that are subject to an ongoing process of improvement. See the Oxford English Dictionary’s official statement regarding “post-truth” as their word of the year: “Word of the Year 2016 is …,” 8 November 2016, https:// en.oxforddictionaries.com/word-of-the-year/word-of-the-year-2016. See also Macdonald (2016) and Shellnutt (2016). The Vaccine Risk Awareness Network (now called Vaccine Choice Canada) provided the following comment on the rubella outbreak in Woodstock in May 2005: Since the beginning of May, the media prompted by health officials, have whipped up a frenzy of fear over the rubella outbreak in western Ontario that

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started in a Christian religious school where a majority of students are unvaccinated. Parents who’ve refused vaccinations for their children are being accused of endangering others’ health; some individuals in the broadcast and print media are even calling for a blanket ‘mandatory’ vaccination policy … Under attack are fundamental rights guaranteed every individual by the Canadian Constitution; the right to exercise freedom of religion and conscience, and the right, as stipulated by Canadian Medical Law, to exercise Informed Consent when considering any medical procedure that carries a risk of injury and death. Vaccination is such a procedure! Unfortunately, the accusations, attacks and call for suspension of the basic human right to refuse invasive medical procedures, flows from a breed of reporters who are trigger happy to pump out sensational news items, but have not put the time into researching the complexity of rubella the disease, the MMR vaccine (which contains the rubella vaccine), its side ­effects and impact on the epidemiology of the disease. (VRAN 2005) See also the Vaccine Choice Canada website, accessed 7 January 2017, http://vaccinechoicecanada.com/. 20 See, in this volume, chapter 7 by Dubé, Sauvageau, and Gagnon; chapter 11 by Boucher; chapter 5 by MacDougall and Monnais; and chapter 4 by Roy. 21 For some people, scrupulous and systematic attention to theological and doctrinal systems is the foundation of their religious lives. My point is that these are only some – and not necessarily the quintessential – dimensions of the religious life. A great deal of what is known about religion through the ages concerns the lives, thoughts, experiences, and aspirations of (almost entirely male) members of the intellectual, religious and social elite. However, many recent descriptions and assessments of religious lives focus on what we can say about the experiences of the majority of non-elite people. These accounts suggest that the extrarational, emotional, and subjective dimensions of religion, however one might characterize them – as a leap of faith, sense of the numinous, personal relationship with a deity, sense of ineffable mystery, trust in powers or forces that are experienced as real and compelling but cannot be validated empirically – are the most characteristic and attractive features of what it means to be religious for probably the majority of people. Here I am alluding to the emphasis in some academic circles on “lived religion,” which emphasizes the often-syncretic religious sensibilities of ordinary believers rather the intellectual or theological architecture associated with elite segments of a given religious population (see Hall 1997; Orsi 2004). 22 See Editors of The Lancet (2010). Note also that in 2011, Wakefield was at the top of Medscape’s list of the worst doctors; see “Physicians of the Year: Best and Worst,” Medscape, 2011, accessed 7 January 2017, http://www.medscape.com/ features/slideshow/physicians-of-the-year/2011. In January 2012, TIME Magazine

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named Wakefield in a list of “Great Science Frauds”; see Alice Park, “Great Science Frauds,” TIME Magazine, 12 January 2012, http://healthland.time.com/2012/01/13/ great-science-frauds/slide/andrew-wakefield/. As Poland, Jacobson, and Ovsyannikova (2009) noted, “The radical anti-vaccine lobby have become ‘weapons of mass distraction’ in trying to educate the public and legislators about the risks and benefits of vaccines” (3241). For an illustration of the continuing support for Wakefield’s hypothesis, see Barbara Loe Fisher’s (2010) blog post, “Doctors, Judges, and Juries Hanging Their Own,” http:// vaccineawakening.blogspot.ca/2010/01/vaccines-doctor-judges-juries-hanging. html. Fisher is the President of the National Vaccine Information Centre and the author of the influential 1985 book, A Shot in the Dark. Indeed, homeopathic remedies are sold not just at natural health stores across North America but at many pharmacies, including the one at the University of Victoria. See Bodeker et al. (2005); see also “Register a Homeopathic Medicine or Remedy,” GOV.UK, last modified 7 December 2016, https://www.gov.uk/guidance/ register-a-homeopathic-medicine-or-remedy. Indeed, the defence of homeopathy was fairly extensive, but this is not the place to discuss it at length. See Caulfield (2005), Fisher (2006), Kudha-Bukhsh (2003), and Riley et al. (2001); see also “Homeopathy: New Evidence,” Medical News Today, 14 November 2008, http://www.medicalnewstoday.com/releases/ 129436.php. See “Many Americans Mix Multiple Faiths,” Pew Research Center, 9 December 2009, http://www.pewforum.org/Other-Beliefs-and-Practices/Many-AmericansMix-Multiple-Faiths.aspx#3. In the work from some of the “new atheists” – such as Christopher Hitchens, Richard Dawkins, and Sam Harris – one senses a deep consternation that after they outline their logic and their data, the vast majority of people continue to believe, congregate, and sustain the ideas, practices, moral sensibilities, and, in many cases, the institutions associated with religion.

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Lefebvre, Solange. 2008. “The Francophone Roman Catholic Church.” In Christianity and Ethnicity in Canada, edited by P. Bramadat and D. Seljak, 101–37. Toronto: University of Toronto Press. http://dx.doi.org/10.3138/ 9781442687622-005. Macdonald, Neil. 2016. “The ‘Post-Truth’ President Flattens Fact-Obsessed Media.” CBC News. 28 November. http://www.cbc.ca/news/opinion/post-truthpresident-1.3871021. MacDonald, P.F. 2007. “The MMR Vaccine Controversy – Winners, Losers, Impact and Challenges.” British Journal of Infection Control 8 (1): 18–22. http://dx.doi.org/ 10.1177/14690446070080010901. Maki, Allan. 2014. “Measles in Canada: Why this infectious disease is spreading.” Globe and Mail, 8 April. http://www.theglobeandmail.com/life/health-andfitness/health/measles-in-canada-why-this-infectious-diseases-is-spreading/ article17866080/?page=all. Mnookin, S. 2012. The Panic Virus: The True Story behind the Vaccine-Autism Controversy. New York: Simon and Schuster. Moore, R., and S. McClean, eds. 2010. Folk Healing and Health Care Practices in Britain and Ireland: Stethoscopes, Wands and Crystals. Oxford: Berghahn Press. Moutsiakis, D.L., and N.P. Chin. 2007. “Why Blacks Do Not Take Part in HIV Vaccine Trials.” Journal of the National Medical Association 99 (3): 254–7. Offit, P. 2011. Deadly Choices: How the Anti-Vaccine Movement Threatens Us All. New York: Basic Books. Omer, S.B., D. Salmon, W.A. Orenstein, P. deHart, and N. Halsey. 2009. “Vaccine Refusal, Mandatory Immunization, and the Risks of Vaccine-Preventable Diseases.” New England Journal of Medicine 360: 1981–8. Oostvogel, P.M., J.K. Van Wijngaarden, H. Van der Avoort, M.N. Mulders, M. Conyn-van Spaendonck, H.C. Rümke, G. van Steenis, and A.M. van Loon. 1994. “Poliomyelitis Outbreak in an Unvaccinated Community in the Netherlands, 1992–93.” The Lancet 344 (8923): 665–70. http://dx.doi.org/10.1016/ S0140-6736(94)92091-5. Orsi, R. 2004. Between Heaven and Earth: The Religious Worlds People Make and the Scholars Who Study Them. Princeton, NJ: Princeton University Press. Osterholm, M.T., N.S. Kelley, A. Sommer, and E.A. Belongia. 2012. “Efficacy and Effectiveness of Influenza Vaccines: A Systematic Review and Meta-Analysis.” Lancet Infectious Diseases 12 (1): 36–44. http://dx.doi.org/10.1016/ S1473-3099(11)70295-X. Paper, J., L.C. Paper, and D. Lai. 2009. “The Chinese in Canada: Their Unrecognized Religion.” In Religion and Ethnicity in Canada, edited by Paul Bramadat and David Seljak, 89–110. Toronto: University of Toronto Press.

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Poland, G.A., R.M. Jacobson, and I.G. Ovsyannikova. 2009. “Trends Affecting the Future of Vaccine Development and Delivery: The Role of Demographics, Regulatory Science, the Anti-Vaccine Movement, and Vaccinomics.” Vaccine 27 (25–6): 3240–4. http://dx.doi.org/10.1016/j.vaccine.2009.01.069. Poltorak, M., M. Leach, J. Fairhead, and J. Cassell. 2005. “‘MMR Talk’ and Vaccination Choices: An Ethnographic Study in Brighton.” Social Science & Medicine 61 (3): 709–19. http://dx.doi.org/10.1016/j.socscimed.2004.12.014. Pontifical Academy of Life. 2005. “Moral Reflections on Vaccines Prepared From Cells Derived From Aborted Human Foetuses.” National Catholic Bioethics Quarterly 6 (3): 541–47. http://www.ncbi.nlm.nih.gov/pubmed/17091557. Riley, D., M. Fischer, B. Singh, M. Haidvogl, and M. Heger. 2001. “Homeopathy and Conventional Medicine: An Outcomes Study Comparing Effectiveness in a Primary Care Setting.” Journal of Alternative and Complementary Medicine 7 (2): 149–59. http://dx.doi.org/10.1089/107555301750164226. Ruijs, W., J. Hautvast, K. van der Velden, S. de Vos, H. Knippenberg, and M. Hulscher. 2011. “Religious Subgroups Influencing Vaccination Coverage in the Dutch Bible Belt: An Ecological Study.” BMC Public Health 11 (1): 102. http://dx.doi. org/10.1186/1471-2458-11-102. Salmon, D.A., L.H. Moulton, S.B. Omer, M.P. DeHart, S. Stokley, and N.A. Halsey. 1999. “Health Consequences of Religious and Philosophical Exemptions from Immunization Laws Individual and Societal Risk of Measles.” Journal of the American Medical Association 281 (1): 47–53. Scullard, P., C. Peacock, and P. Davies. 2010. “Googling Children’s Health: Reliability of Medical Advice on the Internet.” Archives of Disease in Childhood 95 (8): 580–2. http://dx.doi.org/10.1136/adc.2009.168856. Shang, A., K. Huwiler-Müntener, L. Nartey, P. Jüni, S. Dörig, J.A.C. Sterne, D. Pewsner, and M. Egger. 2005. “Are the Clinical Effects of Homoeopathy Placebo Effects? A Comparative Study of Placebo-Controlled Trials of Homoeopathy and Allopathy.” The Lancet 366 (9487): 726–32. http://dx.doi.org/10.1016/S0140-6736(05)67177-2. Shellnutt, Kate. 2016. “Trump Elected President, Thanks to 4 in 5 White Evangelicals.” Christianity Today. 9 November 2016. http://www.christianitytoday.com/gleanings/2016/ november/trump-elected-president-thanks-to-4-in-5-white-evangelicals.html. Shnier, A., J. Lexchin, B. Mintzes, A. Jutel, and K. Holloway. 2013. “Too Few, Too Weak: Conflict of Interest Policies at Canadian Medical Schools.” PLoS One 8 (7): e68633. http://dx.doi.org/10.1371/journal.pone.0068633. Snow, D., and R. Machalek. 1982. “On the Presumed Fragility of Unconventional Beliefs.” Journal for the Scientific Study of Religion 21 (1): 15–26. http://dx.doi.org/10.2307/1385566. Spier, R.E. 2001. “Perception of Risk of Vaccine Adverse Events: A Historical Perspective.” Vaccine 20: S78–84. http://dx.doi.org/10.1016/S0264-410X(01)00306-1.

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Stackhouse, John Jr. 1993. Canadian Evangelicalism in the Twentieth Century: An Introduction to Its Character. Toronto: University of Toronto Press. Stark, R. 1998. “The Rise and Fall of Christian Science.” Journal of Contemporary Religion 13 (2): 189–214. http://dx.doi.org/10.1080/13537909808580830. Statistics Canada. 2003. “Religions in Canada.” 2001 Census: Analysis Series. Statistics Canada Catalogue no. 96F0030XIE2001015. Ottawa. 13 May. – 2011. National Household Survey Data Tables. Statistics Canada Catalogue no. 99-010-X2011032. Ottawa: Released 8 May 2013. – 2014. General Social Survey [Canada]: Cycles 1–26 (1985–2012). Public use microdata files. Streefland, P.H. 2001. “Public Doubts about Vaccination Safety and Resistance Against Vaccination.” Health Policy 55 (3): 159–72. http://dx.doi.org/10.1016/S01688510(00)00132-9. Streefland, P., A. Chowdhury, and P. Ramos-Jimenez. 1999. “Patterns of Vaccination Acceptance.” Social Science & Medicine 49 (12): 1705–16. http://dx.doi.org/10.1016/ S0277-9536(99)00239-7. Taylor, C. 1992. The Ethics of Authenticity. Boston: Harvard University Press. Thagard, P. 2010. “Does Everything Happen for a Reason?” Psychology Today. 11 February. https://www.psychologytoday.com/blog/hot-thought/201002/ does-everything-happen-reason-0. Tickner, S., P.J. Leman, and A. Woodcock. 2006. “Factors Underlying Suboptimal Childhood Immunization.” Vaccine 24 (49–50): 7030–6. http://dx.doi.org/10.1016/j. vaccine.2006.06.060. Tumminia, D. 1998. “How Prophecy Never Fails: Interpretive Reason in a Flying Saucer Group.” Journal of Contemporary Religion 59 (2): 157–70. UNICEF. 1997. Combating Antivaccination Rumors: Lessons Learned from Case Studies in East Africa. Nairobi, Kenya: UNICEF. http://www.path.org/vaccineresources/files/ Combatting_Antivac_Rumors_UNICEF.pdf. UNICEF/WHO. 2012. Immunization Summary: A Statistical Reference Containing Data through 2010. New York: UNICEF/World Health Organization. http://www. nitag-resource.org/uploads/media/default/0001/02/933358b68002a47d8cc5d99b832 7be4f3a345fa7.pdf. Vaccine Risk Awareness Network (VRAN). 1984. “A Brief to the Ministry of Health, Government of Ontario: The Committee Against Compulsory Vaccination.” Vaccine Risk Awareness Network. Accessed 7 January 2017, http://vran.com.s9135.gridserver. com/legacy/philosophy/history.htm. – 2005. “Rubella Outbreak in Ontario – VRAN Information Bulletin.” Vaccination Risk Awareness Network. May. Accessed 7 January 2017, http://vran.com.s9135. gridserver.com/legacy/vaccines/mmr/rub-bull.htm.

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Vitello, Paul. 2010. “Christian Science Church Seeks Truce with Modern Medicine.” New York Times. 23 March. http://www.nytimes.com/2010/03/24/nyregion/24heal. html?ref=topics. Warraich, H.J. 2009. “Religious Opposition to Polio Vaccination.” Emerging Infectious Diseases 15 (6): 978. http://dx.doi.org/10.3201/eid1506.090087. Wolfe, R.M., L.K. Sharp, and M.S. Lipsky. 2002. “Content and Design Attributes of Anti-Vaccination Web Sites.” Journal of the American Medical Association 287 (24): 3245–8. http://dx.doi.org/10.1001/jama.287.24.3245. Woodhead, L., and P. Heelas. 2005. The Spiritual Revolution: Why Religion Is Giving Way to Spirituality. Oxford: Blackwell. Wuthnow, R. 2000. After Heaven: Spirituality in America since the 1950s. Los Angeles: University of California Press. Zuzak, T.J., I. Zuzak-Siegrist, L. Rist, G. Staubli, and A.P. Simoes-Wust. 2008. “Attitudes towards Vaccination: Users of Complementary and Alternative Medicine Versus Non-Users.” Swiss Medical Weekly 138 (47–8): 713–18.

2 Vaccine Hesitancy: Ethical Considerations from Multiple Perspectives kieran c . o ’ doherty , christine smith , and c . meghan mcmurtry

Introduction Vaccine hesitancy and refusal are associated with difficult ethical questions. For example, when an individual refuses to be vaccinated, is it permissible to compel them to accept the vaccine for their own or for the community’s protection? Is it permissible to vaccinate children against their parents’ wishes? How should one balance religious freedom against public health concerns when communities refuse vaccinations on religious grounds? These are difficult questions because different individuals and communities are likely to emphasize a range of values in their responses. When it comes to analysing the ethical implications of vaccine hesitancy and refusal, we need to start by understanding the way in which individuals and groups decide to accept or reject recommended vaccinations. The problem is that there is much disagreement in the scholarly literature about how such decisions ought to be understood. Indeed, different disciplinary viewpoints are available to help us make sense of why people might make vaccine decisions. In this chapter we show that depending on which broad disciplinary approach one adopts, different ethical issues will be raised or masked. For the purpose of this chapter, we focus on the following four fairly distinct perspectives: 1. Public health perspective. This perspective relates to the mandate of protecting health at the societal level and tends to stand in contrast to individual health care. 2. Risk communication perspective. This perspective emphasizes the individual; vaccination decisions are presumed to involve cognitive processing of risks and benefits. 3. Health psychology perspective. This perspective also focuses on the

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i­ ndividual but moves beyond an emphasis on risk information and involves a consideration of broader psychological factors that may influence health related decisions. 4. Sociocultural perspective. This perspective takes into consideration political and historical factors at play in vaccination uptake; individuals’ decisions to accept or refuse vaccinations are understood as embedded in larger social, religious, and cultural contexts. In this chapter, we examine vaccination hesitancy and refusal according to each of these viewpoints. For each perspective, we outline how an individual’s decision about vaccination is conceptualized and how this brings with it a particular reading or emphasis on certain ethical issues. Although we believe that each of these perspectives offers valuable insights to the phenomena examined by the authors of this book, our general conviction is that when it comes to engagement with these ethical issues, there is much to be gained from adopting the widest possible sociocultural and political outlook. We also acknowledge that although we describe these four perspectives as discrete, closer scrutiny identifies much overlap among these viewpoints. We conclude with some thoughts on the practical relevance of these considerations. Public Health Perspective Vaccines are considered one of the greatest achievements in combating infectious diseases and promoting human health (Ulmer et al. 2006). From a public health perspective, vaccination programs represent one of the most powerful interventions available for protecting individual and community health. An important component of this protection is herd immunity – the indirect protection offered to all members of a society by high vaccine coverage. Because non-vaccinated individuals are indirectly protected against infection by being less likely to encounter infectious organisms when overall vaccination rates are high, those who have medical contraindications to vaccines or who do not have a good immunological response to vaccines can comfortably be accommodated and exempted from vaccination while receiving some indirect protection. Problems occur, however, when vaccination rates drop below levels required to establish herd immunity (often cited as being around 90 to 95 per cent coverage, depending on the disease). As explained by Roy, Bettinger, and MacDonald (chapters 4 and 8 in this volume), this has occurred in many jurisdictions for several diseases that have previously been well controlled. ­Moreover, as ­outlined by Bramadat (chapter 1 in this volume) and

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Brunk (chapter 3), there is growing concern that many individuals are deciding against vaccination for religious, cultural, and ideological reasons rather than medical reasons. From a public health perspective, this decline in vaccine coverage presents a certain conundrum. Empirical evidence points to the importance of ensuring high adherence to vaccination programs. Typically, from the perspective of those concerned with public health, there is no doubt that high vaccination rates are in the best interest of individuals as well as the whole population. However, except in rare circumstances, adherence cannot be enforced due to a societal commitment to individual autonomy and democratic values.1 The problem for public health can therefore be framed as a question of how to get communities and individuals to comply voluntarily with vaccination programs. In many instances, this has resulted in public health authorities introducing incentives (e.g., maternity allowance and universal childcare benefits provided with proof of vaccination in Australia; Salmon et al. 2006) and disincentives (e.g., procedural barriers to school registration for those wanting vaccination exemptions; Siegal, Siegal, and Bonnie 2009) to promote high levels of vaccine coverage. One of the most complicated expressions of the challenges facing public health workers (and tied directly to the perspective we are discussing) relates to the matter of vaccinations for health care workers. Depending on the particular disease, vaccinations for several diseases are compulsory for these workers in many jurisdictions. These policies are implemented because health care workers are at an increased risk for exposure to and transmission of vaccinepreventable diseases due to their direct contact with infectious patients or material (CDC 2011). Mandatory vaccination for health care workers helps to fulfil their professional duty to prevent harm, because action is being taken to reduce the transmission of a preventable disease (Anikeeva, Braunack-Mayer, and Rogers 2009). Mandatory vaccination for health care workers also supports worker safety by protecting workers from infectious diseases in the workplace. However, compulsory vaccinations do, by definition, infringe on the autonomy of health care workers, and decisions about which vaccines are voluntary and which are compulsory for this population require careful consideration of the trade-off between conflicting ethical principles. We have seen in recent years numerous situations in which health care workers resisted the state’s or their employers’ mandated vaccination programs. Moreover, the fact that exemptions from vaccinations based on cultural or religious grounds are generally accommodated poses a conceptual problem when viewed from a public health perspective. For example, patients, or health care workers, for that matter, from a small number of religious groups may

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refuse vaccinations based on religious beliefs or doctrines, adherence to which is seen to supersede individual and community health considerations. Thus, it is not that arguments for the efficacy of vaccinations, information about disease risks, and other public health messages are necessarily disbelieved. Rather, these issues may simply be deemed to be irrelevant or secondary to the adherence to a particular doctrine (as in the case of some Roman Catholics who may feel uneasy about vaccines produced from cell lines derived from fetuses aborted decades ago) or a cosmology (as in the case of Christian Scientists, whose beliefs about the power of prayer and the unreality of illness leads them to question the necessity of vaccines). Since this form of resistance is not based on disagreement about the nature or magnitude of health risks, inundating hesitant people with more and more empirical evidence about the risks of vaccines (relative to the risks of diseases or other undesirable conditions, for example) is unlikely to make a difference. In such situations, short of making vaccinations mandatory and compelling individuals and groups to accept vaccines against their will, public health agencies would seem to have no recourse to effectively fulfil their mandate of promoting health. When there is high vaccine coverage in a population and herd immunity is achieved, the unvaccinated are also indirectly protected. Therefore, those who choose to be vaccinated take the small risk of vaccine adverse events while conveying the benefits of indirect protection to those who choose not to be vaccinated. This is generally seen as ethically justified when those who are not vaccinated have a medical condition that precludes them from being vaccinated (e.g., allergy to one of the components in the vaccine). However, individuals’ decisions not to vaccinate based on non-health-related reasons lead to debates about justice and fairness. After all, when herd immunity is in effect, individuals who choose not to vaccinate are benefiting from the immunity provided by vaccination without having to pay the associated “costs” (whether these are financial; emotional, such as a fear or discomfort of needles; or medical, taking into account the risks of adverse reactions).2 Sometimes referred to as the problem of “free-riders,” it has been argued that it is unethical for individuals to refuse vaccination without legitimate reasons (Isaacs et al. 2009), though what counts as “legitimate” is itself, of course, a matter of debate. The issue is compounded when such large numbers of individuals “free-ride” that vaccine coverage drops below critical levels and herd immunity is lost. In this latter case, the free-riders are transformed into a vulnerable group, since they have neither direct nor indirect protection. Decisions not to vaccinate can thus be considered unethical based on arguments of justice, solidarity, and public safety, since large numbers of unvaccinated individuals risk lives by creating vulnerability to disease in the population. In addition to the risk to themselves and other

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non-vaccinated individuals, of critical concern is the heightened risk to infants who are too young and people who are too ill to be vaccinated. Indeed, from a public health perspective, arguments for compelling vaccination could be supported on ethical grounds by considerations of both fairness (all should equally bear the burdens of vaccination so that all can equally benefit) and collective well-being (to achieve and maintain indirect protection for the most vulnerable in the population who cannot be directly protected). A further ethical complication arises when parents refuse vaccination on behalf of their children. Since young children are generally not considered to be competent to make autonomous decisions, there is an evident tension as to whether the child’s parents or the state best represent the child’s interests. Parents are generally seen to have a moral responsibility to care for their children, and many would agree that they are entitled to do so according to their cultural and religious beliefs, unless these harm the child (Isaacs et al. 2009). However, parents’ autonomy in this regard would be curtailed in cases where compulsory vaccination for children is enforced or where refusal is associated with strong disincentives (Field and Caplan 2008; Salmon et al. 2006). Therefore, a key ethical question to consider is, at what point and under what circumstances is the state justified in intervening on behalf of the welfare of a child deemed to be at risk because of parents’ decisions not to have the child vaccinated (Asser and Swan 1998)? It goes without saying that the answers to these questions rely on social values and normative frameworks that are often specific to a particular time and place. So, in a major outbreak of measles (a disease often considered minor by some but that can have very serious consequences), we can expect a higher (general) tolerance within our society to the state’s imposition of vaccination. However, within current policy frameworks, public health officials are tasked with protecting the health of the population. Children who face increased health risks owing to parental decisions to refuse vaccination are thus of particular interest to public health practitioners whose mandate – indeed, their ethical imperative – is to protect vulnerable groups. Based on these considerations, we can suggest that from a public health perspective, decisions against vaccinating can be understood as falling into four categories: justified, misguided, unethical, or out of bounds. 1. Justified. Because vaccination can be associated with adverse reactions, some have argued that vaccine programs must fulfil the highest efficacy and safety standards (Schwartz and Caplan 2011; Verweij and Dawson 2004). In cases where there is reason to believe that an individual is at demonstrably increased risk of serious adverse reactions to a vaccine, a decision not to vaccinate will therefore be seen as justified.

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2. Misguided. In cases where people are seen to make decisions based on incorrect information, decisions may appear misguided or even irrational. As other authors in this book have discussed, individuals often overestimate the risk of adverse reactions and underestimate both the severity of illness and their susceptibility to these diseases. 3. Unethical. Decisions not to vaccinate may be deemed to be unethical when they are seen to put children at risk. Decisions against vaccination may also be deemed unethical if individuals are seen to free-ride and derive the benefits of vaccination without paying associated costs, thereby jeopardizing the immunity of whole communities, particularly that of individuals who are not protected or unable to be vaccinated for medical reasons. 4. Out of bounds. When decisions not to vaccinate are based on reasons or values that are unrelated to the maintenance of health, these may be deemed to be out of bounds of typical public health mandates based upon recognized democratic principles and the rights of individuals and groups. In particular relevance for this book, individuals or groups may resist vaccination based on values they deem to supersede health considerations (e.g., spiritual or religious beliefs). In such cases, other ways of engaging with these communities might need to be sought. There is no doubt that all forms of hesitancy or resistance to vaccination will be seen to cause problems from a public health perspective. However, resolution of the logistical and ethical issues present in the first three categories arguably all fall within public health mandates. It is the last category – the main interest of this book – that is particularly difficult to grapple with from a public health perspective, since resolving these issues exceeds the scope of typical public health mandates. Risk Communication Perspective A dominant paradigm for understanding many health behaviours relies on cognitive models of decision-making (cf. Brunk, chapter 3 in this volume). According to these approaches, individuals are considered to be “rational” decision-makers who take into account the risks and benefits of particular events and actions and come to decisions that optimize benefits (or the likelihood of benefits) to themselves. Consistent with this emphasis, much research has focused on using cognitive models of decision-making to understand reasons for declining vaccination rates. According to cognitive decision-making models, in the context of vaccination decisions, the factors an individual might be assumed to consider include the likelihood and severity of the disease, the

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efficacy of the vaccine, and the likelihood of adverse reactions to the vaccine. From the perspective of such models, problems occur when individuals base their decisions on, for example, exaggerated estimations of the likelihood of adverse reactions to a vaccine, or an underestimation of the severity of the disease. Decisions based upon such perceptions and feelings are generally seen as “irrational” by public health workers, as well as by those committed to most cognitive decision-making models. In most applications of such models, “correct risk information” is presumed to be that which is provided by expert analyses and which takes into account large epidemiological and other relevant studies. In the case of national vaccination programs, expert analyses in almost all cases point towards the rationality of making the decision to vaccinate (if this were not the case, particular vaccines would arguably not be offered as part of large scale programs in the first place). According to this perspective, the general conclusion is that people who do not participate in vaccination programs are somehow misinformed and therefore coming to “incorrect” conclusions and, ultimately, acting irrationally. Based on this reasoning, a logical policy response is to educate the population about the objective risks and benefits of diseases and associated vaccines, since this will lead individuals to the rational conclusion that it is in their own best interest to accept the vaccine. Indeed, not only is this the logical response, but further education of the public is the ethical response from this perspective, since it will allow individuals to make better decisions that are ultimately in their own self-interest. Although this approach does help to explain the way some people make some decisions, additional factors need to be considered. First, parents make decisions to vaccinate not just for themselves but for their children. Nevertheless, the general principles used within this broad approach are employed in similar ways whether or not we are considering an individual’s decision for him/herself or for his/her child. Second, cognitive decision-making approaches allow for the possibility that certain individuals have medical conditions that make vaccinations contraindicated. Such considerations therefore supersede population statistics in assessing the likelihood of adverse reactions, and, as such, these individuals would be seen as making a rational decision in choosing not to vaccinate. Decision-making models that are focused on individuals’ assessment of risks and benefits with the aim of optimizing individual health outcomes can be seen as both descriptive and normative: They are descriptive in the sense that they propose a way of understanding human decision-making. They are normative in the sense that some decisions are seen as “good” or rational, whereas others are seen as “bad” or irrational. Specifically, in the absence of unusual conditions (e.g., severe allergies to components of a vaccine), decisions not to vaccinate are

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perceived as irrational. An important corollary of this perspective is that some risk of adverse events is seen as acceptable and as such is outweighed by the benefits of vaccination. This approach does help us to understand the possible implications of erroneous beliefs about the incidence and severity of disease. For instance, it has been argued that as a result of high vaccine coverage, memory of infectious disease has faded from the public consciousness; at the same time, more attention has focused (often falsely) on reported risks associated with vaccines (Omer et al. 2009). Therefore, greater (successful) vaccine coverage of the population may lead, perhaps ironically, to an inflation of the perceived risk of vaccines and a deflation of the perceived risk of disease. Once again, arguably the strongest ethical imperative that can be seen to emerge from individual risk assessment approaches to understanding vaccination decisions is that individuals are best served when they are made aware of the most accurate available risk estimates associated with both vaccination and disease. However, approaches to understanding vaccination decisions that are restricted to investigating individual cognitive risk assessment processes have at least four limitations. First, an implicit assumption in such approaches is that individuals act according to the purpose of optimizing long-term health (their own or their children’s). As we explain further below, this may not be an accurate assumption. Second, even if individuals can be assumed to make vaccination decisions in accordance with health optimization goals, barriers to uptake may not be cognitive in nature (i.e., erroneous risk estimates) but rather emotional, financial, or practical (see Guay, Dubé, and Laberge, chapter 6 in this volume). Third, individuals may make value judgments about the acceptability of certain risks, irrespective of the magnitude of the probability of the event occurring (cf. Brunk, chapter 3 in this volume). Fourth, and perhaps more specific to the context of the current volume, these decision-making models generally do not incorporate (or even recognize) complex cultural and religious aspects of vaccination decisions. Because of these limitations, important dimensions of vaccination decisions are obscured when operating from a cognitive decision-making perspective. This is critical when assessing ethical challenges associated with vaccination hesitancy. Because it is often the case that only cognitive factors are considered, the scope of analysis of ethical implications is similarly restricted. As outlined above, this means that typically the ethical response to vaccine hesitancy is to simply provide people with more (and more accurate) risk information. We now turn to two further perspectives available for understanding vaccination hesitancy and resistance that allow for a broader scope of factors to be considered.

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Health Psychological Perspective An important expansion of “classically” rational decision-making models is found in approaches that focus on cognitive heuristics and biases. Brunk (chapter 3 in this volume) provides an excellent outline and critique of these approaches in the context of vaccination decisions, so we do not elaborate on this further here. In addition to these approaches, a body of literature emerging mainly from health psychology points towards factors other than the cognitive processing of risks that affect people’s decisions about health-related behaviours. Although health psychologists often approach vaccination decisions using the individual decision-making model addressed above, many point to non-cognitive factors, such as the role of worry, regret, fear, and unmanaged pain. For example, Chapman and Coups (2006) documented that emotional responses to potential adverse events (related to the free influenza vaccine in this case) were more influential in guiding decisions than numeric calculation of risks. Regarding childhood vaccinations, in an ethnographic study of British mothers’ discussions about the MMR (measles, mumps, and rubella) vaccine, “particular personality quirks or phobias” of several mothers were deemed influential in their negative perceptions of medical interventions (Poltorak et al. 2005). Therefore, an individual’s decision not to vaccinate may be understood as the outcome of a person’s subjective engagement with their experiential reality (and the experience for their child, in the case of paediatric immunization) rather than his/her dispassionate assessment of risks and benefits.3 In this section, we briefly consider some of these subjective components of vaccination decisions and explore ethical considerations that arise when vaccine resistance is approached from what we are calling a health psychology perspective. In particular, we examine the roles of procedural pain and fear, beliefs that particular vaccines cause serious adverse events, and alternative health belief systems. The current vaccination schedule recommended by the Canadian National Advisory Committee on Immunizations calls for children to undergo approximately fifteen separate vaccinations (including the influenza vaccination) by six years of age. Thus, parents are repeatedly asked to provide proxy consent for their children to be vaccinated. In a recent survey of over 1,700 Canadian parents, 89 per cent claimed their children were up to date with the recommended vaccinations, although 31 per cent of parents thought that children receive too many vaccinations (Ekos Research Associates, Inc. 2011). To fully understand the diverse perspectives and ethical issues (particularly consent and assent) involved in paediatric vaccinations, it is important to consider the perspectives and experiences of parents as well as children. Ultimately, two central constructs in the physical and emotional experience of being vaccinated

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are pain and fear; both are subjective. Children’s procedural distress (pain and fear) can and does influence parents’ experiences of paediatric vaccinations and vaccination adherence rates. For example, in a recent American study on the role of vaccination experiences on paediatric vaccination uptake, 16 per cent of parents surveyed reported a negative vaccination experience (Stockwell et al. 2011). The most common source of a negative experience was the child’s emotional or physical reaction to the vaccination (approximately 40 per cent); over 70 per cent of these negative experiences were due to the child’s “emotional” distress (Stockwell et al. 2011). In turn, these negative experiences were related to vaccination non-adherence: infants whose parents reported having a negative vaccine experience had a twofold increased risk of being under-vaccinated (conservatively defined as not having a vaccination within one month of the scheduled date). Similarly, in a study with Canadian First Nations mothers, 100 per cent of the sample reported that they found it difficult to witness their children’s distress during vaccinations; some of the participants also indicated that their concerns about their infant were linked to their older children’s fear of needles (Tarrant and Gregory 2003; cf. Hobson-West 2003). It is important to ask who reports negative experiences, and how common are they? Children of varying ages themselves report a high degree of fear of and pain from needles (Hart and Bossert 1994; Taddio et al. 2012). Some health care professionals also acknowledge that children undergoing vaccinations experience fear and pain (Brady, Avner, and Khine 2011): the results of a focus group study with Canadian public health nurses highlighted the nurses awareness that pain from and fear of needles are highly salient factors for children (Kikuta et al. 2011). However, children’s assent to vaccination does not seem to be a focus for health care providers as long as the parents consent. Mothers often report that their children’s immunizations are distressing to watch (Parvez et al. 2010; Poltorak et al. 2005; Tarrant and Gregory 2003), and they may explicitly engage in cost-benefit analyses between the child’s pain and fear from the vaccination (which they presume to be short-term) with longer-term benefits (Parvez et al. 2010). Unfortunately, appropriate psychological (e.g., distraction), physical (e.g., positioning of the infant or child), and pharmacological (e.g., topical anaesthetics) interventions are often not put into place (Taddio et al. 2009, 2010). Parents, health care professionals, and children generally acknowledge that pain is present, but that pain frequently goes partially or completely unmanaged. When weighing the decision to be vaccinated, does unmanaged pain from and fear of these procedures matter? In a negative cycle, fear can influence pain perception (Bird and McMurtry 2012). Unmanaged pain and distress during painful medical procedures such as vaccination have both short- and long-term

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consequences, including longer procedure times, increased distress at future procedures, and avoidance of medical care (Taddio et al. 2009). A recent Canadian study found that needle fear is common in both children (63 per cent of 5–17 year olds) and adults (24 per cent) and was the primary reason cited by 7 per cent of parents and 8 per cent of children for non-compliance with vaccination (Taddio et al. 2012).4 Unfortunately, pain and fear tend to be ignored in discussions around vaccination. For example, in the survey of Canadian parents mentioned previously (Ekos Research Associates, Inc. 2011), common reasons that 10 per cent of parents chose not to vaccinate included the following: vaccinations being seen as unnecessary (28 per cent), concerns about vaccine safety (17 per cent), not believing in vaccines’ effectiveness (16 per cent), and too many side effects (12 per cent); 3 per cent of parents who had missed an immunization gave a response subsequently coded into the reason of “too many injections, it traumatizes the child.” However, the latter half of the sentence (“it traumatizes the child”) is dropped in reporting the results, and nowhere in the document is the word “pain” mentioned by the survey administrators. The lack of recognition of fear and pain as relevant factors in vaccination decisions and an associated dearth of intervention efforts raises the question of whether this apparent dismissal by health care professionals of the fear of and pain caused by vaccinations affects adults’ trust of health care professionals and their willingness to consent on their child’s behalf for vaccination. Certainly, previous medical experiences and relationships with health care professionals may influence an individual’s degree of trust in vaccination (e.g., Poltorak et al. 2005). Stockwell and colleagues (2011) showed that the second most common reason reported by mothers for a negative experience with infant vaccination was the attitude of health care staff. Potentially, perceived attitudes of health care staff towards the immediate impact of vaccinations could play a role in a parent’s consideration of whether or not to provide consent for vaccination. For some parents, a perception of clinician callousness may, in extreme cases, erode their trust in the general safety and efficacy of vaccines; parents may feel that their consent is not completely informed, and a child who is clearly distressed by a needle may be signalling strong refusal to assent. Stockwell and colleagues (2011) therefore recommended that clinicians support parents and engage in improved pain and fear management to increase paediatric vaccination uptake. A further domain of investigation relevant to understanding perspectives on vaccination is that of health beliefs or other belief systems that have consequences on such decisions, irrespective of whether one characterizes beliefs as cognitive or emotional in nature. Causal beliefs of vaccinations leading to particular adverse events or reactions may be particularly important to consider. For example, the belief that the MMR vaccination causes autism has

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led to significant drop in MMR vaccine uptake, as well as in parents delaying immunization of their children. The claim that the MMR vaccine causes autism has gained substantial media attention which, in turn, may contribute to the strength or legitimacy of the belief for some individuals (Woo et al. 2004). The Institute of Medicine reviewed the research and found no evidence of a causal link between the MMR vaccine and autism (Institute of Medicine 2001, 2004); moreover, as Bramadat (chapter 1), Brunk (chapter 3), Boucher (chapter 11), and Bramadat, Bettinger, and Guay (chapter 14) explain in this book, the research, and the researcher (Wakefield) who had provided some initial legitimacy to this link, have both been discredited. Nevertheless, the belief that MMR vaccinations can cause autism still exists and very evidently influences vaccination decisions;5 for some, this belief exists as a kind of faith claim with no necessary relationship with evidence. In now outdated biomedical models, health was typically implicitly seen as the absence of disease. However, broader models of health are gaining in popularity. Arguably, the “biopsychosocial” approach is seen as more appropriate to understanding and treating chronic diseases or illnesses, which are currently highly prevalent in society (e.g., cancer, heart disease, diabetes). Complementary and alternative medicine (CAM) and a holistic health perspective are also on the rise. As Guay, Dubé, and Laberge (chapter 6) and Dubé, Sauvageau, and Gagnon (chapter 7) suggest in this volume, many patients interested in and many clinicians associated with homeopathy, chiropractic, and naturopathy are critical of vaccinations (cf. Ernst 2001). In such cases, the crux of the problem is not that individuals misunderstand the risks involved in their decision; rather, as these other approaches become more common and accepted, they fundamentally challenge the health discourses available to the public (Hobson-West 2003). To summarize, in contrast to many risk communication approaches, models of individuals’ vaccination decisions can be constructed in order to take into account factors beyond cognitive information processing to include intertwined emotional and physiological responses (fear and pain), parents’ responses to their children’s fear and pain, particular causal beliefs related to vaccines (e.g., MMR and autism), and broader health belief systems (e.g., CAM). Fortunately for vaccine advocates, this expanded scope of factors identified as influencing vaccination decisions offers a larger number of targets for possible intervention. For example, with respect to individuals with needle fear (Taddio et al. 2012), effective interventions could focus on encouraging vaccination practices that more effectively manage the pain of injections. What are the ethical dimensions of vaccination decisions from what we call a health psychology perspective? In particular, what are the ethical implications

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of attempting to increase vaccination rates by dealing with pain and fear of vaccinations, or by attempting to change people’s beliefs? Although it might be argued that, even in addressing fear and pain, a degree of paternalism is involved, ethical concerns are rarely raised for interventions of this type. That is, given the larger purpose of promoting individual and public health, reducing procedural pain and helping people overcome such factors as needle fear seem defensible even when that help was not sought. In contrast, changing people’s beliefs about the body or the universe for the purpose of increasing vaccination rates may be associated with larger ethical challenges. Since most developed nations promote religious freedom, attempting to alter such beliefs as part of a public health campaign would require serious deliberations among politicians, health care providers, and members of religious communities. Indeed, most criticisms of the beliefs embedded in CAMs would seem to require at least some of these reflections, since these practices are often rooted not in empirically testable claims but in broader philosophical belief systems about the relationship of humans to a larger cosmic order. What a health psychology perspective offers beyond the risk communication perspective or public health perspective is an understanding of a wider range of factors that may influence vaccination decisions. This perspective therefore also offers a more extensive range of possible interventions for dealing with vaccine hesitancy and resistance. However, such interventions may not be acceptable for ethical or political reasons, at least in the current socio-political climate. In our multicultural and pluralistic society, we have made a societal commitment to respect a wide range of cultural and religious beliefs and cosmologies. Attempting to change people’s cultural or religious beliefs for public health aims may therefore not be ethically defensible, even if such beliefs are associated with decisions not to vaccinate. Sociocultural Perspective Risk is a unifying concept in many approaches to understanding resistance to vaccination. In this regard, Hobson-West (2003) argues convincingly that risk may not be appropriate as the main conceptual tool for understanding, and certainly not for addressing, resistance to vaccination. In our earlier discussion, we have already indicated that some factors unrelated to the perception of risk – such as a fear of needles or a commitment to alternative health care philosophies – are strongly linked with vaccination decisions. We now extend this discussion of issues that transcend individual risk perceptions. While our reflections so far have focused on the individual decision-maker in understanding vaccine resistance and hesitancy, a key objective of vaccination programs is

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arguably the protection of communities and even society as a whole. Moreover, the roots of resistance to vaccination are often found in religious perspectives, belief systems, and cultural practices that are common to groups and communities, not just isolated individuals. For this reason, it is important to grapple with perspectives that operate on broader social, cultural, and political levels. In this section we aim to demonstrate that for certain communities and individuals, vaccinations may have a particular symbolic value that transcends a consideration of risks and leads them to reject vaccination. For some religious communities, vaccination may be symbolic of an increasingly secular society that is hostile to religious or spiritual claims; we see this not just in the Nigerian, Afghan, and Pakistani cases that Bramadat discusses (chapter 1 in this volume) but also in the cases of the Dutch Reformed communities in Canada. For some, vaccination may be symbolic of a society determined to maintain control over its racial and ethnic minorities, and for others, it may be symbolic of “Big Government” (under the influence of “Big Pharma”) trying to coerce and control its citizens.6 Resistance to vaccination programs is neither random nor heterogeneously distributed among the population. Particular groups or segments of society – in some cases, particular regions or neighbourhoods – can be identified as being associated with vaccine resistance or hesitancy. An important factor in understanding these associations is the relationship between social status and attitudes towards vaccination. In the U.K., for example, although public health authorities and members of the social elite embraced vaccination laws with a sense of national pride, many working and middle class citizens were wary of the new Vaccination Acts of 1840–98 and the implications it would have on their lives (see MacDougall and Monnais, chapter 5 in this volume). Harsh discriminatory practices were commonplace, and authorities frequently focused enforcement of vaccination specifically on working class people, as they were viewed as the conduits of disease (Durbach 2000). The penalties associated with the Vaccination Acts mandated vaccination officers to locate non-compliers and impose fines or imprisonment upon those parents who resisted; notably, the same level of compliance was not always enforced on middle and upper class citizens (Durbach 2000; Wolfe and Sharp 2002). Working class citizens perceived compulsory vaccination as a form of class legislation that implicitly targeted working class infants and came with penalties seen as unjust (Durbach 2000; Stern and Markel 2005; see also Roy, chapter 4, and MacDougall and Monnais, chapter 5 in this volume, for a parallel situation in Canada), whereas members of the middle class viewed these as an infringement on individualism and liberty. The increased agitation among the working and middle classes led to the development of a fierce anti-vaccination movement to challenge these laws and

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fight for the rights to their own and their children’s bodies. Mounting pressure from the anti-vaccination movement finally achieved some success with the introduction of the “conscientious objector” clause in 1898, giving parents the ability to opt out if they did not believe vaccines were efficacious or safe (Wolfe and Sharp 2002). The response to vaccinations throughout Western history is complex; for our purposes, the protests of members of the early anti-vaccine movement are quite relevant today, as many core beliefs and attitudes have remained unbroken over the better part of two centuries and are still present among contemporary critics of vaccination (Wolfe and Sharp 2002; cf. Durbach 2000; Roy, chapter 4, and MacDougall and Monnais, chapter 5 in this volume). In addition to class and social equity, religion is sometimes linked with antivaccine stances. As explored above, in instances in which public health efforts to promote vaccines are hampered by opposition from religious groups, it is usually not the case that there is a specific disagreement about risk assessments related to vaccines or the diseases against which they are meant to protect. Rather, opposition stems from a conflict between vaccination on the one hand, and either the practices or beliefs of the particular religious group in question on the other. In North America, religious groups such as the Faith Assembly, Faith Tabernacle, End of Time Ministries, Hutterites, and Christian Science all adhere to belief systems which discourage, if not reject, many commonplace medical inventions including vaccinations. For example, Christian Science members attempt to resolve health problems through prayer, based on the belief that “God is entirely good, and therefore His will for each of us is only health and life” (“What Is Christian Science?” 2011). Other religious groups may also view vaccinations as attempts to interfere with the will of God (Kulig et al. 2002; cf. Bramadat, introduction and chapter 1 in this volume). In some instances vaccine hesitancy among religious groups may be associated with beliefs that, while not strictly components of a specific formal doctrine, circulate within the close-knit community and affect responses to vaccinations. For example, in addition to beliefs about God’s will determining the health status of all human beings, some Hutterites also believe that vaccines are not effective in protecting humans from disease and even that they are harmful (Kulig et al. 2002). Similarly, some have sought to explain the low uptake of childhood vaccinations among Orthodox Jewish communities based on “exaggerated fears” of adverse reactions circulated and perpetuated within the community (Loewenthal and Bradley 1996). Lower rates of vaccination uptake have also been observed among some racial and ethnic minorities (Dhami and Sheikh 2008; see also Guay, Dubé, and Laberge, chapter 6 in this volume) and may be associated with health equity issues. Fitch and Racine (2004) report that, for childhood immunizations, a

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majority of parents living in underserved, relatively poor urban communities believed vaccinations were important for health, yet had misconceptions (relative to official public health communications) regarding the necessity of recommended immunizations, potential effects on children’s immune systems, and safety. One possible reason for such misconceptions may stem from a lack of awareness and lack of knowledge about vaccines. For example, a focus group study conducted by Daniels et al. (2004) suggested that participants from racial and ethnic minorities in San Francisco lacked sufficient information about both benefits and potential side effects of flu and pneumococcal vaccines. In another study conducted in Los Angeles and Honolulu, African Americans and Latinos were found to be significantly less likely to be vaccinated against influenza than whites; the most common response of unvaccinated individuals was that they felt they did not need the vaccine because they were not at risk or relied on other forms of prevention (Chen et al. 2007). Although a lack of knowledge and awareness about vaccine use and effectiveness present challenges within some groups, relatively low socio-economic status (SES), poverty, and logistical issues appear to be major reasons for low vaccine uptake among some groups (see Guay, Dubé, and Laberge, chapter 6 in this volume). Because vaccination schedules often require multiple administrations over longer periods of time, it is not surprising that we see lower rates of coverage among some minority groups, since parents with more resources (higher SES) are more likely to be able to follow suggested schedules than parents without those resources, who are required to take time off work or to visit a clinic several times (Omer et al. 2009). These lower vaccination rates should not automatically be attributed to dispositional factors (e.g., beliefs and attitudes). Rather, these rates may involve or reflect many complex barriers that contribute to growing health disparities (Fiscella et al. 2000). In some circumstances, therefore, low vaccination rates may better be understood as a symptom of inequity as opposed to resistance. The point we would like to emphasize here is that whether vaccination is associated with class, racial, ethnic, or religious identities, vaccination decisions are not just individual decisions: they are strongly associated with group membership. A striking feature of many of the groups identified in our discussion above is a sense of mistrust between the group and mainstream society or particular authority structures. For example, owing to discrimination in the U.S. health care system, African Americans demonstrate higher rates of mistrust towards government agencies, medical researchers, and health care providers (Chen et al. 2007). Similarly, research among Canadian First Nations communities found that anti-immunization beliefs may have evolved from past negative experiences that led elders to mistrust the health care system (­Tarrant and Gregory 2001). Mistrust of health care professionals in the context of

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vaccinations was also found among Orthodox Jewish mothers (Loewenthal and Bradley 1996). This mistrust cannot be understood simply as the perceptions of isolated individuals. In many cases, there are long histories of well-documented systemic discrimination and unethical practice directed against these groups and which are evident in the associated attitudes about vaccination. As Brunk explains in chapter 3 of this volume, the higher the levels of mistrust in risk communicators and managers, the less likely their communication and persuasion will convince individuals or groups of the benefits of vaccination. In this regard, vaccines cannot be understood as interventions that reduce risk and are isolated from other considerations. Rather, vaccination uptake and hesitancy need to be understood in the social, cultural, and political context in which they occur. As mentioned previously, depending on the circumstances, for some individuals and communities, vaccine hesitancy may reflect the group’s resistance to an increasingly secular society that ignores religious values, a white-dominated society that attempts to contain minorities, or a “Big Government” that tries to control citizens. A further consideration related to trust is that of the value systems in which vaccination behaviours are embedded. Vaccinations and the public health programs in which they are rooted are ultimately based on a particular value system that, while widely accepted in our society, is not universally accepted. Our point here is not to challenge these dominant values. Rather, we aim to emphasize that these activities are not value-neutral and that these values may not be shared across all of society. For example, as explored above (see also Bramadat, introduction and chapter 1 in this volume), certain religious beliefs prohibit vaccination based on a perception that vaccines constitute an attempt to interfere with God’s will. Such beliefs are often characterized as “irrational” in science policy and by public health advocates. However, in many cases, religious beliefs are extra-empirical in the sense that they do not refute or even engage with the scientific case one might make for vaccines (e.g., about vaccine efficacy), but they nevertheless direct adherents against vaccination. Such beliefs are thus better understood as constituting or growing out of a value system which is not in accord with the prevalent value system underpinning public health efforts. So what are relevant ethical considerations about vaccine hesitancy from a sociocultural perspective? When vaccination is mandatory, many jurisdictions allow for exemptions for a variety of reasons. This is not problematic when exemptions are relatively infrequent and dispersed evenly across a whole population. However, as noted previously, public health representatives face a dilemma when there are particularly low vaccination rates and vulnerable individuals become susceptible to the spread of infectious disease. Public health

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officials see it as their duty to promote vaccinations and implement interventions to maximize vaccine uptake. However, when resistance is based on alternative belief systems or falls along racial or class lines then, from a political perspective, the scenario resembles one (larger, advantaged) group imposing its will and beliefs on another (smaller, disadvantaged) group. The problem then appears to be that of “us” (the majority) knowing and deciding what is best for “them” (the minority). Although freedom of religion is considered a guaranteed fundamental freedom in liberal democracies, like parental rights, it is not an absolute: courts have the power (and the duty) to place limitations on these freedoms in order to protect public safety and the health of others (Barnett 2011). Indeed, the U.S. Supreme Court, for example, has ruled that the constitutional right to freedom of religion is not violated by requiring schoolchildren to be vaccinated (Asser and Swan 1998), and Canadian law similarly includes cases which protect the right of the state to substitute its assessment of the best interest of the child.7 Field and Caplan (2008) observe that it is in the nature of government to exercise coercive authority. Of course, in many instances public health interventions do not involve outright coercion. However, even less direct efforts to alter behaviour such as limiting access to school, employment or daycare without proof of vaccination arguably involve a level of coercion. The point here is not to suggest that the autonomy of groups and individuals must be respected at all costs. On the contrary, the tension between individual rights and collective action in public health are well recognized and will not be easily resolved (Siegal, Siegal, and Bonnie 2009). However, from a perspective that takes into account broader social, cultural, religious, and political realities, it is imperative that the values embedded in public health systems are explicitly acknowledged. This honesty and transparency can then lead to a deeper engagement with those alternative value systems that lead some communities to be hesitant about vaccination. Ultimately, the guiding principles must be the building of relationships of trust between health care workers and patients, across and between communities, and with larger societal structures. Beyond the recognition of diverse values, this will also require acknowledgment that resistance to public health practices may be grounded in broader mistrust of government rooted in past and ongoing social injustice, racialized discrimination, and both social and economic inequality. As Wynne (2006) argues, the building of trust must rest primarily on efforts to enhance the trustworthiness of authority structures rather than attempts to manufacture trust in particular target populations. From a political and sociocultural perspective, therefore, an ethical response to vaccination hesitancy must involve frank, open dialogue and respect between individuals and groups with opposing sets of values and

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social experiences. The central features of the dominant health perspective are that it is strictly scientifically based rather than values-based and that it is self-evident that the government is benevolent. These assumptions must be set aside or subjected to some honest criticism if we hope to encourage in all citizens an attachment to public health practices that benefit both individuals and the broader society. Conclusion Our aim in this chapter has been to explore the ethical implications of addressing vaccine hesitancy from a number of different perspectives. In particular, we provided an analysis of the ethical aspects of the phenomenon from four distinctive analytical perspectives we see at work in the debates around vaccines: public health, risk communication, health psychological, and sociocultural perspectives. We have argued that dominant approaches to understanding ­decision-making about vaccination rely on cognitivist and individualistic assumptions and do not adequately capture the breadth of the phenomenon of vaccine hesitancy and resistance. Broader perspectives are necessary to gain insight into important elements of the problem. We do not suggest that these are the only relevant perspectives, nor that they capture every ethical dilemma that might arise in contemplating the administration of vaccines in a pluralistic society. However, we do believe that our analysis raises issues that merit further consideration. First, normative considerations vary depending on the position of the observer and the theoretical framework adopted. In practical terms, this means that to be considered “ethical” by a broad range of publics, official policy responses to vaccine hesitancy should not be confined to consideration of the problem from a single (usually the cognitive risk communication) perspective. Second, while some perspectives may be more comprehensive or encompassing than others, we believe that public health, risk communication, health psychology, and sociocultural perspectives can help to illuminate a fuller set of ethical considerations in addressing vaccine hesitancy. Third, we expect that there is much to be gained by public health officials incorporating a wide array of perspectives into their understanding of the challenge of vaccine refusal and hesitancy. The sociocultural perspective might be particularly challenging to adopt, but it may prove valuable in suggesting alternative viewpoints that need to be taken into account in formulating interventions and policy responses. It is probably the perspective that would provide one of the most useful approaches to those forms of vaccine hesitancy that are rooted in religious convictions or cosmologies. Finally, we conclude with some thoughts on practice. Our analysis reveals a certain incongruence in many public health promotional strategies about

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vaccines. In particular, we observe that vaccinations tend to be conceptualized by public health as representing a collective health benefit. However, (depending in part on the specific vaccine) many promotional materials seem to be based on individualistic frameworks of risk communication and rational ­decision-making models. Given that the public health goal of herd immunity and many of the factors characterizing vaccine hesitancy are collective in nature, it is conceivable that promotional strategies targeting groups and group identities might be more effective than those emphasizing individual risks and benefits. This also makes sense given ethical considerations that individuals who choose not to get vaccinated are not only making that decision for themselves; they are adding to the risk of their community. Vaccine hesitancy for particular individuals may be associated with a particular group identity (religious, ethnic, holistic health beliefs, etc.). Thus, an individual who may be inspired to resist vaccination based on their religious identity may also be directed towards accepting vaccinations through his/her identity as a parent, a citizen, or a neighbour. That is, a person’s affinity with a particular faith, practice, or discursive community is only one aspect of identity among many and will therefore not be the only deciding factor in determining vaccination decisions. Public health strategies that are based upon this understanding of the multiple and intersecting layers of identity may be most effective, especially when coupled with messages that build on relationships of trust and inclusion across groups and individuals. Moreover, if vaccinations are perceived as trusted because they are recommended and administered by “someone like me” (especially someone within one’s religious, ethnic, racialized or cultural community), rather than “them,” it may be possible to increase vaccination rates while at the same time fostering individual and group autonomy. Similarly, if vaccinations are promoted not simply as “in my best interest” but as “in the interest of my community and those I love,” the dichotomy between self-interest and collective well-being may be productively eroded. NOTES 1 It is important to acknowledge that public health departments are granted mandates to use more coercive measures in extreme circumstances, such as in the case of severe epidemics or pandemics. 2 Note that we include here (1) specific cases of some individuals who for medical reasons cannot be immunized because of, for example, immunosuppression or an egg allergy and (2) general adverse reactions to vaccines, both common/minor ones such as a sore arm and serious/rare conditions.

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3 However, one parent noted, “We [parents] wouldn’t forgive ourselves if they [our children] contracted a serious illness and we could have prevented it” (Guay et al. 2015). 4 In fact, this fear is often vicarious. One parent said, “I am more afraid for [my child], than he is afraid. It’s more because it causes him pain at the time of the injection” (Guay et al. 2015). 5 One of the participants in the Guay et al. (2015) study noted that she worries about the “MMR vaccine, because it is alive and there are neurological risks as well as a lack of information regarding its link with autism.” 6 As one parent noted, “I doubt the necessity [of vaccines and have] little confidence in the studies and recommendations approved by the government, and [I am suspicious of] the financial interests of pharmaceutical companies to sell their vaccines” (Guay et al. 2015). 7 See A.C. v. Manitoba (Director of Child and Family Services) [2009] 2 SCR 181, 2009 SCC 30. https://scc-csc.lexum.com/scc-csc/scc-csc/en/item/7795/index.do.

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– 2004. Immunization Safety Review: Vaccines and Autism. Washington, DC: National Academies Press. Accessed 17 May 2014, https://www.nap.edu/catalog/10997/ immunization-safety-review-vaccines-and-autism. Isaacs, D.D., H.A. Kilham, J.J. Leask, and B.B. Tobin. 2009. “Ethical Issues in Immunisation.” Vaccine 27 (5): 615–8. http://dx.doi.org/10.1016/j. vaccine.2008.11.002. Kikuta, A., F. Gardezi, V. Dubey, and A. Taddio. 2011. “Practices and Perceptions Regarding Pain and Pain Management during Routine Childhood Immunizations: Findings from a Focus-Group Study with Nurses Working at Toronto Public Health, Ontario.” Canadian Journal of Infectious Diseases and Medical Microbiology 22 (2): 43–8. http://dx.doi.org/10.1155/2011/381864. Kulig, J.C., C.J. Meyer, S.A. Hill, and C.E. Handley. 2002. “Refusals and Delay of Immunization within Southwest Alberta: Understanding Alternative Beliefs and Religious Perspectives.” Canadian Journal of Public Health 93 (2): 109–12. Loewenthal, K.M., and C. Bradley. 1996. “Immunization Uptake and Doctors’ Perceptions of Uptake in a Minority Group: Implications for Interventions.” Psychology Health and Medicine 1 (2): 223–30. http://dx.doi. org/10.1080/13548509608400020. Omer, B.S., A.D. Salmon, A.W. Orenstein, P. deHart, and N. Halsey. 2009. “Vaccine Refusal, Mandatory Immunization, and the Risks of Vaccine-Preventable Diseases.” New England Journal of Medicine 360 (19): 1981–8. http://dx.doi.org/10.1056/ NEJMsa0806477 Parvez, E., J. Stinson, H. Boon, J. Goldman, V. Shah, and A. Taddio. 2010. “Mothers’ Beliefs About Analgesia during Childhood Immunization.” Paediatrics & Child Health 15: 289–93. Poltorak, M., M. Leach, J. Fairhead, and J. Cassell. 2005. “‘MMR talk’ and Vaccination Choices: An Ethnographic Study in Brighton.” Social Science & Medicine 61 (3): 709–19. http://dx.doi.org/10.1016/j.socscimed.2004.12.014. Salmon, D.A., S.P. Teret, C.R. MacIntyre, D. Salisbury, M.A. Burgess, and N.A. Halsey. 2006. “Compulsory Vaccination and Conscientious or Philosophical Exemptions: Past, Present, and Future.” The Lancet 367 (9508): 436–42. http://dx.doi.org/10.1016/ S0140-6736(06)68144-0. Schwartz, J.L., and A.L. Caplan. 2011. “Ethics of Vaccination Programs.” Current Issues in Virology 1: 263–7. Siegal, G., N. Siegal, and R.J. Bonnie. 2009. “An Account of Collective Actions in Public Health.” American Journal of Public Health 99 (9): 1583–7. http://dx.doi.org/10.2105/ AJPH.2008.152629. Stern, A.M., and Markel, H. 2005. “The History of Vaccines and Immunization: Familiar Patterns, New Challenges.” Health Affairs 24 (3): 611–21. http://dx.doi. org/10.1377/hlthaff.24.3.611.

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Stockwell, M.S., M. Irigoyen, R.A. Martinez, and S. Findley. 2011. “How Parents’ Negative Experiences at Immunization Visits Affect Child Immunization Status in a Community in New York City.” Public Health Reports 126: 24–32. Taddio, A., M. Appleton, R. Bortolussi, C. Chambers, V. Dubey, S. Halperin, A. Hanrahan, M. Ipp, D. Lockett, N. MacDonald, et al. 2010. “Reducing the Pain of Childhood Vaccination: An Evidence-Based Clinical Practice Guideline.” Canadian Medical Association Journal 182 (18): 1989–95. http://dx.doi.org/10.1503/cmaj.092048. Taddio, A., C.T. Chambers, S.A. Halperin, M. Ipp, D. Lockett, M.J. Rieder, and V. Shah. 2009. “Inadequate Pain Management during Routine Childhood Immunizations: The Nerve of It.” Clinical Therapeutics 31 (Suppl B): S152–67. http://dx.doi. org/10.1016/j.clinthera.2009.07.022. Taddio, A., M. Ipp, S. Thivakaran, A. Jamal, C. Parikh, J. Smart, J. Sovran, D. Stephens, and J. Katz. 2012. “Survey of the Prevalence of Immunization Non-Compliance Due to Needle Fears in Children and Adults.” Vaccine 30 (32): 4807–12. http://dx.doi. org/10.1016/j.vaccine.2012.05.011. Tarrant, M., and D. Gregory. 2001. “Mothers Perceptions of Childhood Immunizations in First Nations Communities of the Sioux Lookout Zone.” Canadian Journal of Public Health 92 (1): 42–5. – 2003. “Exploring Childhood Immunization Uptake with First Nations Mothers in North-Western Ontario, Canada.” Journal of Advanced Nursing 41 (1): 63–72. http:// dx.doi.org/10.1046/j.1365-2648.2003.02507.x. Ulmer, J.B., U. Valley, and R. Rappuoli. 2006. “Vaccine Manufacturing: Challenges and Solutions.” Nature Biotechnology 24 (11): 1377–83. http://dx.doi.org/10.1038/ nbt1261. Verweij, M.M., and A.A. Dawson. 2004. “Ethical Principles for Collective Immunisation Programmes.” Vaccine 22 (23–4): 3122–6. http://dx.doi.org/10.1016/j. vaccine.2004.01.062. “What Is Christian Science?” 2011. Christian Science. Accessed 2 May 2014, http:// christianscience.com/what-is-christian-science. Wolfe, M.R., and K.L. Sharp. 2002. “Anti-Vaccinationists Past and Present.” BMJ: British Medical Journal 325 (7361): 430–2. Woo, E.J., R. Ball, A. Bostrom, S. Shadomy, L.K. Ball, G. Evans, and M. Braun. 2004. “Vaccine Risk Perception among Reporters of Autism after Vaccination: Vaccine Adverse Event Reporting System 1990–2001.” American Journal of Public Health 94 (6): 990–5. http://dx.doi.org/10.2105/AJPH.94.6.990. Wynne, B. 2006. “Public Engagement as a Means of Restoring Public Trust in Science – Hitting the Notes, but Missing the Music?” Community Genetics 9 (3): 211–20.

3 The Role of Risk Perception in Vaccine Hesitancy and the Challenge of Communication conrad g . brunk

At the outset of this book project, the research team met with a group of experts and informed stakeholders in the vaccine hesitancy debate. We heard from people who held strong views on very different sides of the issue. Two participants made particularly impassioned statements. One came from an epidemiologist, well-trained in the impact of infectious diseases on populations and the role of vaccination in the control and prevention of these diseases. She was also the mother of a child who, she recounted, began to have serious sleep, eating, and sensory problems, and was subsequently diagnosed with pervasive development disorder shortly after receiving the measles, mumps, and rubella (MMR) vaccine. At our meeting she said she understood that any causal link between the vaccine and autism, which she knew had been alleged in what turned out to be a fraudulent study, had not been scientifically established. However, the fact that the two were, temporally, so closely linked in her own child’s case made the possibility of a causal link so evident to her that she felt a debilitating burden of guilt about her decision to vaccinate her child. As a scientist herself, she fully recognized the extensive benefits that vaccines bring to society in the reduction of serious illnesses, especially those suffered by children. Nonetheless, given the great burdens suffered every day by her family and the many families of autistic children, she wondered whether the possibility that these burdens might have been caused by her decision to vaccinate her own child was too great to justify the obvious benefits. At the same research meeting, our team also heard an impassioned statement from a nurse who worked in a paediatric intensive care unit of a hospital in an area in which there were a significant number of unvaccinated children. She described the suffering of the children who have been admitted to the intensive care unit as a result of vaccine-preventable diseases as “utterly unacceptable.” She argued ardently that health professionals have a moral obligation

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to educate the parents of these children in order, as she put it, “to allow parents to make the choice that saves their child’s life.” For her, the benefits of childhood vaccination were overwhelmingly evident, and the failure of parents to vaccinate their children could stem only from ignorance of these benefits and unfounded fears of harms that had no scientific basis. In addition, many chapters in this book cite statements from vaccine-­hesitant people. The comments come both from those who remained steadfast in their refusal to vaccinate themselves or their children and from those who did vaccinate, but with reservations (Guay et al. 2014). They reflect the full range of the well-known considerations cited by those with serious concerns about ­vaccination – including beliefs about serious side effects; confidence in the science or motivations of scientists, government, corporations, and health professionals; the opinions of peers and significant others; religious convictions; the obligations of parenthood; and so on. However, these individuals were not asked to extend their reasoning further, so we are left wondering about deeper questions: What leads these people to decide finally which considerations are the decisive ones for them? Why do they give priority in their thinking to some risks over others in their decision? Why do they choose the authorities they cite (e.g., science, anecdotal evidence, Internet, sacred scripture)? Why do some of them conclude that the possibility of causing harm through vaccination (even though it may be improbable) is a more, or less, important consideration than the possibility of causing harm by failure to vaccinate? The purpose of this chapter is to delve deeply into the assumptions that lie beneath the surface of these so disparate and apparently contradictory viewpoints. There is more going on in these stories, and in many other expressions of support for or opposition to vaccination, than might immediately be apparent. This book aims to clarify and analyse the multiple factors that complicate the vaccination debate. The specific focus of this chapter is upon the ways the perception of risks and their acceptability influence the positions the antagonists stake out in this debate. The stories of both professionals mentioned at the beginning of this chapter frame the risks and benefits of vaccination. One of them finds the taking of that risk to have been a morally blameworthy mistake; the other finds the failure to prevent the risks of non-vaccination of children to be equally blameworthy. Both of these women are scientifically literate professionals. Their disagreement does not lie primarily in different understandings of the science itself but rather in how to interpret that science and translate it into responsible action. The aim of this chapter is to understand better what is involved in that process of translation. How do people arrive at their conclusions about what makes the risk of vaccination acceptable? Once we are able to identify the additional, non-scientific factors in the formulation of people’s

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conclusions about vaccination safety, we will be able to understand these issues more fully and address concerns more effectively. The other chapters of this book lay out the many factors influencing public attitudes affecting acceptance or non-acceptance of vaccination. They include the ambivalence of a segment of the population towards the dominant system of “allopathic” medicine in Western society and the attraction to alternative therapies; the fear of “mega-institutions” like Big Pharma, and, for that matter, Big Government, which are viewed as threats to individual (especially parental) autonomy and responsibility; and religious or broader “cultural” convictions and practices that are often critical influences on the way people think about their health. Another factor identified by several authors, and discussed often among scientists, health care professionals and other experts, is often termed “scientific illiteracy.” Although this is often cited as a global explanation for what seems to experts to be an irrational understanding of the risks and benefits of vaccination, the term tends to conflate several distinct aspects of the question of acceptable risk. The concept of acceptable risk is complex. Some of the questions posed by this concept may be answered by the science behind the technology. However, some of them are not answerable by science at all, because they are not actually scientific questions. There are at least three different ways in which people’s choices might be considered “unscientific”: 1. People may have an inadequate understanding of the scientific basis for medical interventions such as vaccination and thus do not fully appreciate their effectiveness in the prevention and alleviation of disease, or they may believe that vaccinations have adverse health consequences, despite these beliefs being unsubstantiated by scientific data. 2. People may be prone to making fallacious inferences about the probabilities of the risks and benefits of vaccination, because they simply do not understand probabilities and statistics. 3. People may make inappropriate decisions about the acceptability of these risks and benefits, because they defy the widely accepted approaches to “rational decision-making.” While these are distinctly different understandings or assumptions, and very different questions are involved, they are not completely independent. Ignorance of the scientific basis of vaccination and reliance on anecdotal evidence can, and often does, lead to unsubstantiated fears of adverse consequences, such as firm beliefs that vaccination has been the cause of illness or disability,

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or to gross overestimations of the probability of known adverse consequences. Such scientific ignorance can also lead to the underestimation of the known benefits of vaccination programs or even to complete denial that such benefits exist. Popular media are replete with claims made on the basis of pseudoscientific evidence about these risks and benefits, and scientifically untrained people often lack sufficient resources to evaluate them critically. As a result, these people often draw conclusions about the relative probabilities of the risks and benefits of vaccination that fly in the face of existing scientific evidence. These judgments can lead them to decisions against vaccination for themselves or their children based on their conviction that it is not in their own or their child’s best interest; the vaccination may even be judged as unethical. The literature on the psychology of human decision-making is replete with studies of the ways most of us tend to make serious misjudgments about probabilities (Kahneman 2011). Translating a statistical probability into a practical decision is often not an easy task, even for experts. Laypeople are even more prone to error in assessing probabilities. Often, the very same statistical probability is viewed differently, depending on the way it is stated. For example, most people will see a difference between a probability of saving the lives of eight out of ten people and a probability of losing the lives of two out of ten (the latter seen as worse) (Kahneman 2011; Kahneman et al. 1982; Tversky and Kahneman 1974). These facts about human psychology do lead people to misjudgments about the effectiveness (and acceptability) of vaccinations. The fact that there is an acknowledged risk of adverse consequences in, say, 15 in 10,000 vaccinated persons can be more salient to people than the fact that there is likely (and often life-saving) benefit for the remaining 9,985. It is evident, then, that the third claim above is not really about “scientific illiteracy,” because it involves questions that are not at all about science. They are not disputes about the magnitude of the risks and benefits (largely a scientific issue) but instead about the relative acceptability of the risks and benefits of vaccination. Risk acceptability (the technical definition of the concept of “safety”) is quite clearly a value judgment, not a scientific measure or estimation of the risk (Rescher 1983). It always raises the question, “According to whose values is the risk acceptable?” And, of course, different people use different values when reflecting on the acceptability of risk. Many people are willing to tolerate high levels of risk (the “risk takers”). For some, such as those who enjoy “extreme” sports, high risk is even sought after as a value in itself (the “extreme risk takers”). Others (perhaps the majority of us) tolerate much lower levels of risk (the “risk averse”). The truth is, of course, that matters are far more complicated than this simple typology, for we all know that most people are more accepting of some risks and less accepting of others, and this depends upon a plethora of

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other issues bound up in the way risks are perceived. Many of us know persons who insist upon eating only organic foods (they may be intolerant of pesticide risks), are afraid to fly on airplanes (they have a dread of dying in a plane crash), but are skiers or heavy smokers (maybe they want to reduce other risks just because they so enjoy – or are addicted to – taking these larger risks). This question of how we judge risk acceptability is the primary concern of this chapter. This aspect of the social debates around environmental and human health risks, from climate change and genetically modified plants and animals to blood transfusions and vaccinations, tends to be the least understood by risk experts. The very characterization of some risk acceptability judgments as evidence of “scientific illiteracy” illustrates this lack of understanding. As a result, experts who are charged with the task of promoting policies and projects that raise concerns of unacceptable risk among people who reject or are hesitant about an accepted medical practice often fail miserably in their communication efforts. My aim in this chapter is to clarify the non-scientific aspect of public attitudes towards perceived risks associated with technologies in general and therefore also with vaccination, more specifically. Understanding the full range of issues that inform people’s acceptance or hesitation with regard to vaccination is critical for persons on all sides in order to appreciate more fully the positions of those with whom they disagree and to communicate effectively with them. Vaccination programs are promoted by health care professionals, governments, and public health officials, because there is a strong consensus among scientists, vaccine producers, and health practitioners that these programs are an effective tool in the reduction and even, in some cases, elimination of serious human diseases. As illustrated by Bettinger and MacDonald (chapter 8 in this book), widespread participation of the public is critical to the effectiveness of most vaccination programs. A relative few unvaccinated members of an atrisk population can undermine the effectiveness of the program by permitting reservoirs of the disease to remain in the population, posing a constant threat. If this is a result of active hesitancy on the part of subpopulations that hold dissenting views about the value or acceptability of a vaccination program, then health officials and practitioners naturally feel a strong obligation to persuade these subpopulations to accept and participate in the vaccination program. The typical approach taken begins with the assumption that those who hesitate about or reject vaccination simply fail to understand the science supporting the efficacy of these programs; as such, the perceived key to changing their attitudes is to better communicate this science. Understanding or acceptance of the medical science is clearly one of the most important factors in acceptance or hesitancy with respect to vaccination.

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But it is not just a matter of simple ignorance or scientific illiteracy; often, it is a matter of mistrust in that science, even though it might be well understood. Mistrust in medical science and practice can have many motivations. These include the following: • a general mistrust in science itself that results from apparently conflicting scientific studies reported in the media; • fallout from major accidents or illnesses that result from technologies or procedures that are declared “safe” by scientific experts (e.g., thalidomide, Vioxx, etc.); • pseudoscientific studies (e.g., the 1998 Wakefield study associating the MMR vaccine with autism, later discredited; see Wakefield et al. 1998; Editors of The Lancet 2010) that make claims of serious risks associated with vaccination and other medical interventions; • real uncertainties in emerging evidence over which the scientific community is in a state of controversy; • rejection of the dominant paradigms of medical science and practice by “alternative” therapeutic practices and philosophies (e.g., naturopathy, traditional medicine, homeopathy, etc.); • the growing influence of what is known as the “precautionary principle,” which provides what many people see as a rational foundation for erring on the side of caution in the use of new technologies where there are thought to be significant uncertainties in the underlying evidence base. These sources of mistrust in the science underlying the development and use of medical vaccines in the management of human disease are widespread in contemporary society. This “crisis of trust,” as Bramadat describes it in chapter 1, exists across Canadian society and has been significantly facilitated by rumours circulating on the Internet and social media. It exerts an influence upon the thinking of many people, including those with fairly high levels of scientific literacy; it also creates a community of like-minded individuals. In fact, studies have shown (Frewer, Shepherd, and Sparks 1994) that with respect to many different controversies in our society, such as those related to genetically modified foods, nuclear energy production, cell phone radiation, and so on, the subpopulations who refuse to accept the dominant expert risk assessments are typically not less scientifically literate than the general population, and in many cases, they are more literate. These studies call into serious question the wide acceptance by risk experts of the “knowledge deficit model,” which seeks to explain dissenting risk acceptance as a reflection of scientific illiteracy (which would, naturally, be redressed by science education). What the knowledge

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deficit model of risk perception misses in its assessment of these debates are many of the same factors at work in the phenomenon of vaccination hesitation in our society. Before turning to these factors in risk perception, I should note that one of my main claims is that what is often missed in these observations is the fact that more is involved in the conclusions people draw from probabilities of risk and benefit than merely the rational or statistical balance of potential outcomes; also embedded in these conclusions are complex value judgments. Moreover, throughout this chapter, by the term “values,” I mean all of those considerations by which we evaluate things as good or bad, right or wrong, worthy or unworthy. It includes all our preferences for the things we experience. Traditionally values are defined in contrast to “facts.” Facts are those observable things and states of affairs that exist in the universe. A fact is what “is.” A value, on the other hand, is an attitude towards what is or what might be. There are many sources of our values. Some may be innate in our genes, while others we learn through the course of our lives, from parents, friends, and our surrounding culture. Values also become embedded in societies and cultures. Historically, one of the most important sources of cultural and personal values has been religion. The underlying world view within a religion contains both implicit and explicit judgments about what things in the world are worthy and unworthy, acceptable and not acceptable, and so forth. Indeed, because many religions focus on the things people consider of “ultimate concern” (Tillich 1957) – that is, the most important things in life – they often include values that are “non-negotiable.” Some of the religious groups who reject vaccination do so because they believe that it violates an explicit divine prohibition, often based upon the interpretation of their tradition’s scripture. Most values, including those based in religion, are not of this non-negotiable type, however. Most people and cultures recognize that values are often in conflict and that choices have to be made among competing values. Most of the issues about whether risks of harm are “worth” the probable goods to be achieved require these kinds of often difficult choices. Factors in Risk Perception The concept of risk, the science of risk assessment, and the enterprise of risk management have become central elements in the management of environmental and health problems in modern societies. The “risk paradigm” is attractive because it promises to provide an objective and rational tool for public policy decisions involving trade-offs between social benefits and harms that can result from human activity – particularly technology. Benefits and harms

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are paradigmatic examples of what are known as “values.” Our notions of harm and benefit are not simply the results of empirical observation, and they are not just facts about what people experience (though they include those as well). They are value judgments we make about the way these facts impact our lives. This is reflected in the debate, for example, about how the harm of particular diseases should be measured. Should it be in terms of its economic costs to society or to the diseased individual? Should it be in terms of levels of individual pain and suffering? Or should it be in terms of something like a QALY (quality-adjusted life year) measurement, which attempts to adjust for pain and suffering across different persons? Despite this clearly value-based or evaluative aspect of the concept of risk, liberal pluralistic societies have a strong interest in basing public policy as much as possible on the non-value-based, factual, and therefore scientific, aspects of risk issues. To the extent that this can be accomplished, the claim can be made that public policy is based upon “value-neutral” considerations, which should, in theory, be acceptable to all reasonable people regardless of their differing value commitments (their religious views, their ethical frameworks, their cultural convictions, etc.). Of course, it should come as no surprise that members of strong “value communities,” such as religious groups, are often suspicious of these “value-neutral” public policy tools and see them as actually embedding hidden values that are antithetical to their own. They are arguably often right about this. In any event, our society relies heavily upon the science of risk assessment to carry out the largely (but not entirely) empirical task of determining what outcomes, beneficial or harmful, are likely to result from our actions and employment of new technologies.1 The science of risk assessment is based upon the idea that a level of risk can be determined by a mathematical formula of quantifiable factors – the magnitude of harm (or benefit) times the probability of that harm actually occurring. Assuming that we have solved the (value-based) problem of determining how harms and benefits can be quantified and measured (a problem philosophers and economists have argued about interminably), we can measure those outcomes and we can assign statistical probabilities to their actualization under different circumstances.2 The standard definition of “risk” in the risk assessment literature is that the level of a risk is a multiple of the total amount of harm that can result from some adverse event and the probability of this event actually occurring (Rescher 1983; Thompson 1986). Contemporary medical practice in nearly all respects – including the evaluation of new drugs and therapeutics, which encompasses new vaccines, for approval in the marketplace by government regulatory bodies – is based upon this risk paradigm. The notion of “evidence-based medicine,” which has become

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the mantra of health care in our society, also relies upon this methodology in assessing the efficacy of treatments and interventions. This approach to the evaluation of health care interventions does place them on a valuable scientific foundation. There is little question that health care should be based, as much as possible, upon the best available evidence and also that the risk assessment approach is the best way of doing that, despite its unavoidable reliance upon certain non-scientific assumptions (e.g., the question about how to define and measure the harms).3 However, even given this way of assessing the degree of risk (and benefit) of therapeutic interventions, there remains the problem of determining how much of the assessed risk is acceptable. In the risk paradigm, this is called the problem of risk management or “safety assessment.” This problem is, unlike the risk-assessment process, generally recognized as a question of valuation. Rarely is safety a question of reducing risk to zero. Indeed, there are few activities or technologies in life that are risk free. The question, then, of whether an activity is “safe” is almost always a question of whether the expected level of risk is acceptable (in light of the expected benefits). This question can be answered only by reference to several additional questions: The level of risk is acceptable to whom? And what are the appropriate criteria, if any, by which they make this evaluation? These are all questions to which empirical science has no answers, because they are not scientific questions. These evaluations are unambiguously dependent upon their differing preferences, as well as their moral, religious, and philosophical frameworks. The well-known scientifically substantiated risks of driving without a seatbelt are not acceptable for a growing number of people. However, some people continue to reject seatbelts, even though they are aware of the scientific evidence showing they are much more likely to be seriously injured or killed in an accident without them. Presumably, their choice has something to do with the fact that they value the freedom from the annoyance of a seatbelt. The tendency among experts, especially those committed to science based decision-making in matters of public policy, is to look for an objective and rational formula for determining the normative question of acceptable risk. The most attractive alternatives are those that lend themselves to a purely quantitative appraisal that allows for a kind of mathematical precision to the answer. Among these are the typical approaches in economics that look for ways to balance potential harms against potential benefits (risk-benefit analysis) or for ways to optimize these in some way (e.g., Pareto optimality), or to achieve the greatest reduction in risk at the lowest cost (cost effectiveness) (Thompson 1986; Sen 1985). These kinds of quantitative approaches are perfectly appropriate in many contexts, especially those in which the question involves the preferences of only

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one party (e.g., assessing personal or corporate financial risk). But there are many other ways by which people and groups decide whether risks are acceptable to them. These other approaches do not have the same quantitative rationality as those mentioned in the previous paragraph. Their “rationality” is relative to other theoretical frameworks which may invoke ethical, religious, or other kinds of principles. Those who invoke these more qualitative decision-making rules or heuristic devices are often charged with being “unscientific” or “irrational” by the experts who look for more quantitative formulae for determining risk acceptability. What are some of these more qualitative value frameworks by which many people view the acceptability of risks? These have been identified by many studies of risk perception, which attempt to understand the factors that lead laypeople to adopt very different conclusions about risk acceptability than the standard quantitative approaches would suggest (Slovic 1987; Wildavsky and Dake 1990; Fischhoff 1998; Fischhoff, Slovic, and Lichtenstein 2000). Of particular interest to scholars are psychological factors at work in the human brain that are thought to lead to “irrational” conclusions about acceptable risk,4 defined as irrational because the conclusions do not conform to quantitative algorithms. Let us take a look at the most commonly identified “qualitative” factors that influence most people’s perceptions of acceptable risk, paying attention to the underlying values at work in them and to the relevance of these factors to the way in which many people evaluate the acceptability of vaccination for themselves or their children. Unfamiliarity of Risk Human beings, like most other animals, have evolved successfully over the millennia because they have learned how to navigate among the many hazards that lie in wait for them in their environment. We have developed strategies for coping with those threats that are common to our experience and thus fear them less. Faced with new and unfamiliar potential threats, we are naturally more cautious, until we have more experience with them and learn whether they are benign or risky. It is not surprising, then, that psychometric studies consistently find that the average person is much less accepting of novel and unfamiliar risks than those that are more familiar, even though the risk associated with the latter may in fact be much greater. This factor is illustrated repeatedly by vaccine-hesitant subjects in several studies (Guay et al. 2014; Dubé et al. 2015), in which subjects stated that they preferred their children to develop immunities to diseases through “natural exposure” to the disease rather than what they viewed as the artificial, less

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familiar vaccine. This sentiment can be seen in the following statements of vaccine-hesitant subjects: Well, yes, once again, to develop the immune system you need to have certain diseases and afterwards, you’re stronger and you develop antibodies … Not every­ one dies from measles and in some of the things I’ve read, they say that measles is a childhood disease that all children should have and that it’s a good disease for building up the immune system. Of course, there can be complications and it can be fatal. (Dubé et al. 2015) I did not see the usefulness [of the chickenpox vaccine] since all children of my generation had chickenpox. (Guay et al. 2014) I believe that our immune system is already an immune system that should normally be sufficient, in the past children survived without vaccines. (Guay et al. 2014)

Many risk experts (von Winterfeldt 1992; Tversky and Kahneman 1974) are inclined to view this human tendency as “irrational” in several respects. To them, it appears to involve several errors of judgment. The first error is an overestimate of the magnitude or the probability of the unfamiliar risk, unsupported by the available scientific evidence. The recent controversy in British Columbia and elsewhere over the installation of “smart meters” to monitor home hydroelectricity usage would illustrate this point. A scientific assessment would suggest that this technology poses little, if any, risk to human health, but the fact that it is completely new made many people overestimate the risk. The second error is that of finding a risk unacceptable when it may be small in comparison with the likely benefits that could be realized. This error can be seen in the case of fears about a new vaccine, even when the benefits are great and well substantiated. These judgments are irrational, however, only if there is sufficient scientific evidence to substantiate that the unfamiliar risk is, in fact, very low and there are no other relevant reasons for finding the risk unacceptable. In many risk controversies, one or both of these assumptions may not be justified. That is, it may be that the scientific understanding of the novel or unfamiliar risk is incomplete, in which case the actual magnitude of the risk will be uncertain. In this case, a precautionary aversion to the potential risk might be appropriate. It may turn out to be much greater than the current evidence suggests. Further, there may be other considerations relevant to the acceptability of the risk, such as those considered in the following subsections. Sometimes the

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experts – or those who stand to benefit greatly from the marketing of new products – may exaggerate the level of scientific certainty about the potential risks, or they may downplay any lack of knowledge. The recent case of Vioxx, an arthritis drug – which led to thousands of adverse cardiovascular events, including heart attacks – serves to illustrate this. As noted, concerns related to the introduction of new vaccinations reflect this natural aversion to unfamiliar (and thus often uncertain) risks. Those who are hesitant to vaccinate themselves or their loved ones often believe (even if on dubious scientific grounds) that the vaccination poses a risk of some dreaded disease or syndrome. If, as in the case of autism, the causes of that disease or syndrome are themselves highly uncertain or contested, then the natural human tendency is to adopt a highly precautionary stance to any possible cause. Any suggestion that vaccination is a possible cause will then be taken very seriously, and the natural tendency of risk aversion will set in. In combination with other factors, such as those outlined below, this aversion will be strongly reinforced. Psychometric studies also regularly refer to something known as the “Dread Factor” (Slovic 1987). This refers to the fact that not all harms – certainly not all diseases – and not all ways of dying are evaluated by people in the same way. They are surely not evaluated in the way the usual risk assessment formulae evaluate them in terms of some common denominator (such as costs to the economy). The average person does not evaluate the risk of dying in that same way, regardless of how that dying happens. Some ways of dying are far more feared than others (e.g., death in a plane crash versus death in a car crash). Some diseases are far more “dreaded” than others (e.g., cancer versus heart disease). These differences of perception are not explainable in terms of any common measure (e.g., pain levels associated with the options, likelihood of death, or frequency of occurrence) (Rescher 1983; Thompson 1986). Social scientists and psychologists may be able to explain why people have some of the preferences they do, but there is no agreed upon conception of “rationality” by which it is possible to say that the preference for dying one way is more reasonable than the preference to die another way. They are simply preferences. The false claims widely circulated within the anti-vaccination subculture (e.g., that dreaded and little understood conditions such as autism and autoimmune diseases are associated with childhood vaccination) illustrate the power of the “dread” factor in risk perceptions. Autism is clearly rated as a dreaded syndrome in our society, as the testimony of the mother cited at the beginning of this chapter demonstrates. How could anyone reasonably reject a widely accepted medical practice that promises the highly certain reduction of one serious risk (rubella, diphtheria, etc.) and prefer a practice (non-vaccination) intended to protect themselves or their loved ones from a risk of an imagined

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adverse side effect? The answer to this question lies in part in the fact that the diseases being prevented by vaccination, while seriously debilitating or even lethal in many cases, are diseases the human species has lived with and died from for centuries, and they are diseases whose etiology and human consequences are well known. In a sense, they can be said to be “institutionalized” in human experience. This institutionalization is reinforced by the fact that, precisely because of extensive vaccination, most people do not see these diseases anymore, as Bettinger and MacDonald explain in chapter 8 in this book. For the average person, such diseases live only in the form of abstractions, ideas, and stories. When the highly certain and probable risks of these well-known, less dreaded diseases (e.g., measles, mumps, and rubella) are balanced against the highly uncertain and improbable risks of the unfamiliar, more dreaded – even if entirely imagined – side effects of vaccination against these diseases, such as autism, the choice made between vaccination and non-vaccination is not always predictable. In addition, a high level of mistrust in the scientific or medical professions, a sense that the choice is being imposed upon one by powerful (and untrusted) agents (the crises of trust and truth outlined by Bramadat in chapter 1), and a strong fear of being the cause of another’s (especially a child’s) suffering, among other factors, may all lead to a choice against vaccination. Distribution of Risks and Benefits Another important factor influencing the acceptability of risks in the psychology of risk perception is whether the benefits (or risk reductions) resulting from a new technology are seen to be fairly and justly distributed. It is not always true that the benefits of a technology or practice are enjoyed by the same parties that may be exposed to the risk. In fact, this situation arises with respect to many, if not most, technologies. Those who enjoy the benefits of electricity from a nuclear power plant are typically not the ones who will be exposed to radiation from working in the plant or living near the radioactive waste disposal site. Those who reap the benefits from exports of oil may not be the ones who make their living in the waters where the tankers transport the oil or on the lands crossed by the pipelines. Nearly everyone in modern societies shares a fundamental moral principle that one person or party does not have the right to benefit at the expense of another’s harm. Indeed, this “harm principle” is the most widely shared and uncontested moral value in liberal democratic societies, a bedrock principle of law. No matter how widely people disagree in their general systems of value, religion, or philosophy, they are likely to agree on the principle that “one person’s freedom to pursue his/her own good is limited by the right of all others

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not to be harmed by that pursuit” (Mill 1859). As widely and as deeply held as this principle is, it is surprising how often it is ignored by risk management experts, who tend to assume that the only question to ask about the acceptability of a risk is whether the sum total of risks (to all affected – the “risk bearers”) is outweighed by the sum total of the benefits (to all affected – the “risk beneficiaries”). If so, then the risk is declared as acceptable. However, if those who stand to be harmed are not the same parties as those who will derive the benefits, as in the nuclear power plant example, the risk bearers will very likely view the situation as one in which they are being harmed by the risk beneficiaries. The simple risk-benefit approach to safety questions makes good sense to the risk beneficiaries, but it makes much less sense to the risk bearers – and for good reason. Why should the latter accept these additional risks, no matter how small, if it is only for the benefit of others? The solution to this problem is a major quandary in political and economic theory. The problem is not easy to solve in public policy, because nearly all policies unavoidably favour the interests of some more than others. Nevertheless, the moral or scientific imagination is not stretched in understanding why the perception among some people that risks of harm are being imposed upon them in order for others to enjoy additional benefits (which also, some might argue, include reduction of their own risks), is likely to lead them to conclude that those risks, however great or small, are completely unacceptable. When individuals perceive themselves as unjustly endangered, they are not likely to view the risk as acceptable, regardless of the scientifically assessed magnitude or probability of the harms. The phenomenon of vaccination hesitancy in our society clearly illustrates this risk perception. Vaccination programs are sometimes promoted by health professionals as essential elements in a program of population health, where the goal is to reduce the incidence of a serious disease in the population at large. In order to achieve this goal, as many of the members of the at-risk population as possible need to be vaccinated, since the holdout of only a few can undermine the effectiveness of the program. It is easy, in this situation, for some to view the vaccination of themselves or their children as something likely to be more beneficial for the larger population than for themselves. This is especially true if they believe (see the previous section) the vaccination imposes risks upon them or their children that are being rationalized in terms of benefits (including risk reduction) for others. This attitude may strike health professionals (and many other public-spirited people) as antisocial and individualistic, because it gives priority to individual rights or interests above the rights or interests of the society. This kind of “rugged individualism” is, however, strongly rooted in North American libertarian culture

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and politics, especially in the United States. The more strongly committed people are to this libertarian attitude, the more naturally inclined they will be to accept this approach to the acceptability of vaccination risk (Petts and Niemeyer 2004). Voluntary and Involuntary Risk Very closely associated with the issue of risk-benefit distribution is the question of whether a risk is perceived to be voluntarily borne and is under the autonomous control of the risk bearer. This question is also an aspect of the “harm principle” articulated in the previous section. No one who thinks for an instant about his/her own acceptance of risk is surprised that there is a great difference between the acceptability of a risk voluntarily taken and that very same risk involuntarily imposed. Indeed, this is probably the most important factor in the way most people perceive risk acceptability – more important, often, than the magnitude of risk itself (Slovic 1987; Fischhoff, Slovic, and Lichtenstein 2000). It is clear that when people engage in activities like skiing, skydiving, mountain climbing, and the like, they do so not because they believe the risks to be very low. On the contrary, they know perfectly well that the risks are very high. Those risks are acceptable primarily because they are freely embraced by the risk taker. In fact, there is even some sense in saying that the risk taker enjoys the risk taking for itself, not for some other offsetting benefit (e.g., pleasure). People notoriously engage in a range of activities that others deem unacceptable for themselves, precisely for this reason. The reason many people smoke, eat junk food, and drive automobiles, all of which are among the most risky activities in modern life, is not always because they are ignorant of the risks (Slovic 2001; McDaniels et al. 1992; Fischhoff, Slovic, and Lichtenstein 2000; Read and Combs 2000). It is not unusual at all for these same people to be extremely averse to other, much lower risks, because they feel that they do not want additional risks on top of those high ones they already take, voluntarily or involuntarily. Thus, the chain-smoker (high risk) may insist upon eating only organic, pesticide-free foods (low risk avoidance); the junk food addict (high risk) may refuse to skydive (high risk) or ride in commercial airplanes (much lower risk). These behaviours are often seen by risk experts as evidence of human irrationality, but they need not be irrational at all. If you take high risks by doing some things, does it not make perfect sense to reduce your risk elsewhere, in order to keep your voluntarily chosen risk burden lower?5 It is the perceived voluntariness of these risks that make them acceptable in the first place. But if others add to your risk burden without your consent, for however laudable a reason, you are not very likely to accept it, even if that risk is very low (Slovic 1987, 2001; Thompson 1986; Sjöberg 2000). The ethics of

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the “harm principle” are again at work here. A foundational assumption of liberal democracies is the principle that others do not have the right to impose harms on you – and that includes the risk of harms. So, as a general rule, and for easily understood and good reasons, a risk perceived by someone as involuntarily imposed, especially for someone else’s benefit, is going to be much less acceptable, even if the actual (i.e., not just the perceived) magnitude of that risk is quite low. There is simply no parity between a risk voluntarily taken by someone who also enjoys the benefits and one not voluntarily accepted. For example, you may be happy with the risk you take by smoking your cigarette in a space that I occupy, because you are choosing to take that risk. But the risk your smoking imposes on me is not acceptable, no matter how small, because I am not voluntarily choosing it. The importance of this distinction, so obvious and so rational when called to people’s attention, is also one of the most frequently forgotten by risk experts in their attempts to persuade laypeople to accept various risks. The least effective strategy of persuasion here, and yet the one most often invoked, is again the simple “comparative risk” strategy. Pointing out that the risk associated with something potentially imposed upon one (e.g., vaccinations) is small in comparison to the risk associated with something one accepts voluntarily (e.g., riding in a car) is not likely to persuade anyone that the former is therefore acceptable. A better way to persuade people to accept the risk is to find reasons the risk bearers are likely to embrace (e.g., “You yourself will benefit” or “It is beneficial to those you care about”). The phenomenon of vaccine hesitancy is strongly shaped by this factor of voluntariness and compulsion. Whenever a vaccination program is mandated by governments, health authorities, employers, school boards, or other influential institutions, it takes on the character of a coercive imposition. If there are worries of risks associated with the vaccine, or vaccination in general, whatever the foundation of these worries, these risks will likely be viewed as involuntarily imposed. If the experts cannot credibly argue that there are no such risks, then it matters little that the risk is remote: it will still be seen as an imposed risk of harm. This fact about risk perception puts vaccination promoters in a kind of double bind. The greater the threat the disease poses within the population, the more urgent the case for broad participation in the vaccination program becomes. The more urgent the case, the greater the public policy imperative to encourage and even mandate vaccination becomes. However, the more coercive the vaccination program, the more hesitant those subpopulations who fear the risks will become. The risks become less acceptable, even though they may be acknowledged as low. If the social/political context is one where this sense of

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coercion is reinforced by high levels of distrust in government agencies and/or the “Big Pharma” behind the vaccines, the resistance will likely be strengthened. This generates a very difficult communication challenge for the promoters of a vaccination program. Appeals to science are unlikely to be persuasive to those for whom other risk perception factors already render even small risks unacceptable. If the scientists and public health workers cannot honestly claim that there is no risk (something the scientists involved can almost never establish), the possibility of some risk must be left open, and this reinforces the perception that the experts are imposing an involuntary risk on those who have concerns about vaccination. In this situation, the communication challenge is to address the issue directly. One way to do this is to assist people in seeing that the coercive aspects of the program are essential ways of protecting them or their own children from the risks others are already imposing on them. The Controllability of Risk Autonomy is a value deeply imbedded in Western law and moral theory. The sense of control over one’s life impacts upon another aspect of risk acceptability very closely related to voluntarism. A risk over which a person has a sense of control is much more likely to be found acceptable than one over which that person has no such sense. For example, people who drive generally have great confidence in their driving skills, including their ability to avoid accidents; according to this (false) confidence, the high death and injury rate in automobile accidents is because of other drivers who are less skilful at driving and avoiding accidents than they are (Slovic 1987, 2000). Of course, the fact that most people are not that skilful does not change their perception – they like to think they are in control, and they have high trust in themselves. In contrast, in an airplane, passengers are at the mercy of others – the pilots, the crew, and the mechanics who possess all of the control. If something goes wrong on an airplane, unlike in a car, people are entirely helpless, at the mercy of these other people or perhaps of fate or God’s will. The control factor in risk acceptability often correlates with the familiarity factor cited above: familiar risks are those to which we have become accustomed and for which we have devised avoidance and control mechanisms. This relates to the example cited in the familiarity discussion – the comparison between the relatively familiar diseases for which many vaccines have been developed, such as measles, mumps, and so one, and the less understood diseases such as autism. An important aspect of the unfamiliarity of a disease such as autism is the fact that it remains almost completely outside our powers of control. We

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have no idea how to prevent its onset and very little idea about how to control or ameliorate its devastating effects. Again, the acceptability of the risk of an uncontrollable disease like autism is not going to be perceived by many people as equivalent in acceptability to the risk of the more manageable diseases controlled by vaccines. There is no small irony here in the fact that the existence of effective vaccines is probably the most effective mechanism of controlling these diseases. The greater fear of the vanishingly small to non-existent risk of autism from vaccination, then, is itself partly a product of the effectiveness of the vaccines themselves. Agency and Responsibility for Risk In the usual expert risk assessment, a risk is a risk and a harm is a harm, regardless of the sources or agents responsible for creating the risk or harm. Equal harm is equally bad, whatever its origins or whoever is responsible. This is not so for most laypeople or even for the experts in daily management of their own risks. For most of us, it makes a big difference if the risks we bear are imposed on us by the randomness of nature or by the mysterious purposes of a deity on the one hand, or by responsible human agents on the other. It also makes a big difference whether we see ourselves as the primary agent of harm to others, especially those for whom we have the strongest moral concern and responsibility (e.g., our family and our children). For reasons we cannot elaborate on here (embedded deeply in moral intuitions and social norms), we expect others to act responsibly towards us in not imposing harms on us, and we make a similar demand on ourselves insofar as we seek to act ethically towards others. As a result, people tend to be far less tolerant of risks they perceive as imposed upon them by their neighbours than they are of similar or equal risks imposed upon them by fate, nature, or the deity or deities they acknowledge and whose “will” for their lives they accept. Consequently, a risk that is not preventable may be less concerning than an equal or much lower anthropogenic risk. To put it another way, we expect greater ethical responsibility from our neighbours than we do from nature, and thus we are less tolerant of the risks imposed upon us by the former. This factor can be seen at work in the vaccine hesitancy of many people who base their opposition on religious beliefs. From their religious perspective, the incidence of disease in the population and the selection of the individuals who are the victims are matters that cannot be separated from divine will and intervention in the world. This understanding is expressed in the common description of natural events, especially the most tragic and disastrous ones, as “acts of God.” It is not surprising, then, that risks of “natural” events such as disease tend to be

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viewed quite differently from risks imposed by human agents, even by persons who may not explicitly think of themselves as religious (Brunk and Hartley 2012). This acceptability of the natural risk over the anthropogenic risk (from medical intervention) is reflected in the following statements from vaccinehesitant research subjects: Some illnesses are not too important. Often to be sick does not do much beside symptoms, then why take the risk of a bad reaction [to the vaccine]. (Guay et al. 2014) We say that nature works wonders, so why go against nature, nothing is lacking in our environment, it’s just fine the way it is. For my part, I know when my child was born, we had the choice of having a little bit of cream in the eyes, a little bit of this, a little injection for that. Right from the moment of birth, and even before, there are various interventions that can be done … I didn’t accept any of them. (Dubé et al. 2015)

Of special importance for most people is that if we feel responsibility for the care of someone else, then we do not wish to be the agent that causes them harm. For most of us, there is a big difference between the sense of moral responsibility we feel not to be the cause of harm to others and the responsibility we feel to prevent harm caused by others.6 So, all other things being equal, risks imposed by others upon us and risks of which we perceive ourselves to be the agent are usually less acceptable to us – we will tolerate far lower levels of these risks. In many instances they are less acceptable because, should the harm actually materialize – even if improbable or relatively insignificant – it would be seen to be a harm unjustifiably done to another by oneself. The ethical principle “do no harm” – which is deeply ingrained in the public imagination and in health care – is clearly one of the sources of this risk perception. This aspect of risk acceptability is strongly at work in the perception of vaccination risk. The decision to vaccinate a child is usually made in the final analysis by the parents or guardians. Their consent is, at least, a necessary element in the vaccination. If a parent already believes or fears that the vaccine involved carries with it even very minimal risks of a serious harm to the child, it is not surprising that this suspicion can be significantly magnified by the awareness that one is choosing to impose that potential harm on the child. Anti-vaccination and vaccination-hesitant subcultures are fuelled by widespread stories on the Internet and in their social networks of parents who have observed their child become afflicted with a previously unnoticed and/ or undiagnosed malady in a period of time relatively proximate to the child’s

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vaccination. While, from the point of view of science, these stories are anecdotal, they have a powerful impact on other parents who hear them (Guay et al. 2014). This impact comes in large part from a natural identification and empathy with the pathos of the distraught parents who fear they have been the agents of their own children’s suffering. The epidemiologist mother’s emotional statement summarized at the opening of this chapter is striking in the way it expresses aversion to being the morally responsible agent of harm to her own child. As a scientist, she can be assumed to understand the differences in the scientific evidence for the risk of the diseases against which she vaccinated her child compared with the lack of evidence that the vaccination increased the risk of the autism her child developed. She can also be assumed to fully appreciate the fact that the vaccination greatly reduced the risk to her child of those maladies for which it was designed. Nonetheless, what she expresses as the most significant aspect of her own risk assessment is not connected to these probabilities; it is about the possibility that her choice could have imposed this harm upon her child, however improbable this result. She understood that the onset of her child’s i­llness – which happened in close temporal proximity to the vaccination – is only one data point and thus has no scientific significance. In the discussion with her, one of the other participants in our meeting pointed out that her experience provides only “anecdotal evidence.” However, as a scientist, she also might know that new evidence can always revise current scientific consensus and that today’s “anecdotal evidence” sometimes turns out to be part of the data set that revises tomorrow’s science. Risks to the Vulnerable The preceding discussion points to another factor influencing risk acceptability found in risk perception studies (Raithatha et al. 2003; Boholm 1998; Slovic 1987; Pligt 1998), which have consistently noted that risks borne by children, the elderly, and other vulnerable persons unable to protect themselves from risks or to voluntarily consent to them are viewed very differently by most people, especially by those who perceive themselves in a position of responsibility for these persons. A risk that threatens a child or other vulnerable person raises a higher level of concern than a risk to oneself or others. Accordingly, the same level of risk most people would find acceptable in a food or therapeutic product consumed mainly by adults is less likely to be acceptable in a product consumed by the very young or the very elderly. Obviously, the concern for a vulnerable population (children) is a major factor among the vaccine-hesitant, simply because children are at the greatest risk for

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vaccine preventable diseases, and therefore most vaccination programs are aimed at children. The precaution most of us are prone to exercise with respect to children and the vulnerable will reinforce the other factors at work in vaccination hesitancy. Trust The single most important determinant in risk acceptability is found again and again to be the factor of trust (Slovic 1987, 2000; Wynne 2006; Frewer and Miles 2001; Wildavsky and Dake 1990; Graffeo et al. 2004). We are much more likely to accept risks, even significantly high risks, if we have a high level of trust in the producer of the risk and the manager of the risk; the higher the trust, the higher the level of acceptance. People are willing to accept high-risk health interventions such as organ transplant surgery not only because the alternatives to treatment are bad or worse but also in part because they trust the professional (and the profession) delivering the therapy. If this trust is eroded by serious errors or malpractice, the profile of acceptability is changed dramatically (see chapter 1 by Bramadat for a discussion of the “crisis of trust”). Vaccination opposition and hesitancy are influenced by the trust factor in risk acceptability in several easily identifiable ways. Many observers have noted that within the vaccination hesitancy subculture, the level of mistrust in the pharmaceutical industry (the developers and manufacturers of the vaccines) is higher than in the general population (McMurray et al. 2004; see chapter 1 by Bramadat and chapter 4 by Roy, this volume). This mistrust is fuelled by several factors: these include the widely publicized and documented cases of the industry introducing into the market and vigorously promoting therapeutic drugs – such as Vioxx – that ended causing serious harms to many people who used them. The industry claims that the drugs had been thoroughly tested and did not pose unacceptable risks of those harms then served to undermine trust in both the competence and integrity of the industry. Once the trust in a risk manager is undermined, it becomes very difficult to restore, and future attempts to persuade people that those products are acceptably safe, no matter how low the actual risks, are not likely to be successful.7 In addition to this mistrust in “Big Pharma” is the mistrust in other parties involved in mandated vaccination programs. These include the government agencies that implement and promote these programs, often perceived as encroaching upon individual liberties by those already ideologically opposed to “Big Government.” Also included is mistrust in the medical profession itself, which is viewed in many of the vaccination hesitancy groups as being “in bed” with Big Pharma. Mistrust is easily extended to the whole range of parties involved, including physicians and public health officials, with the consequence

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being that the unacceptability of the risk is magnified and the attractiveness of vaccinations is reduced. This mistrust in these agencies is reflected in the statement of the research subject quoted in Guay and colleagues’ 2014 study: “[My] hesitation is on the necessity, [I have] little confidence in the studies and recommendations approved by the government and [in view of] the financial interests of pharmaceutical companies to sell their vaccines.” Ethical Basis of the Risk-Producing Activity Another factor affecting the acceptability of risk is related to the way the production of the risk is viewed within the value system of the perceiver. That is to say, if the activity by which the potential harm is posed is itself perceived by the risk bearer as unethical, that risk will be less acceptable. One of the sources of vaccination opposition is from religious individuals and groups motivated by strong moral prohibitions against the use of vaccines. Although the vast majority of religious individuals and communities support vaccination, for a small number, deeply rooted convictions make it nearly impossible for them to alter their perspectives. In these cases (see Bramadat, chapter 1, and the appendix in this book), it is not an assessment of the health risks posed by vaccinations that characterizes their concerns; rather, it is a sense of moral risk associated with, for example, the perception that HPV vaccinations might induce or normalize teenage sexual activity or the moral culpability associated with accepting vaccines manufactured using cell lines from aborted fetuses. Although this moral risk is deemed to be unacceptable, in practice, persons holding this primarily moral view often bolster it by pointing to the health risks as well. These objections to the moral risk of vaccination can be generated by a variety of theological and moral views (cf. Bramadat, chapter 1 in this volume), including the view that vaccination interferes with God’s plan for individuals’ lives or that the production of vaccines involves practices deemed to be unethical (e.g., using cell lines derived from aborted fetuses). Interestingly, the way people holding these views commonly find a way around legally mandated vaccination (or other therapeutic interventions, such as blood transfusions for minors) is to permit the authorities to do these things to them or their children, “against their will.” The rationalization for this is that the evil is done not by themselves or their own agency but by others against their will. In their ethical understanding – not so different from the “agency” consideration identified earlier in this discussion – they are not morally to blame for the vaccination (or transfusion), because it was done to them by another. The moral risk then becomes acceptable. This, for example, has become the standard legal understanding in both the U.S. and Canada for resolving the conflict between

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the state and Jehovah’s Witnesses on the matter of enforced blood transfusions of Jehovah’s Witness children (Singelenberg 1990). The Challenge of Communication in the Vaccination Hesitancy Controversy The preceding discussion of the factors involved in the decisions we all make about which risks we want to take or allow to be imposed upon us shows that the attitude any person or group takes to a risk is the product of a very complicated set of social, cultural, religious, and personal forces. It should be abundantly clear that the question of whether vaccination (or any other technology) is acceptably safe involves far more than just the question of how much risk the science establishes. Thus, the assumption that scientific illiteracy is the primary problem to be resolved in our society’s vaccination debate is far too simplistic. Surely, much of the opposition to vaccination stems from a rejection of the scientific consensus around vaccination risks. It may also be a rejection of or mistrust in the science that is reinforced by perceptions formed around the acceptability of even the very small risks involved. Where does this leave health care professionals and public health officials, who passionately believe in the importance of vaccination of a population against serious diseases? Part of the answer to this question depends upon what we mean by “effective” in this context. If health professionals see their primary task to be that of persuading the reluctant to abandon their views and embrace vaccination for themselves and their dependents, then I doubt that there is much that will be very effective, including marketing campaigns by pharmaceutical companies. Nearly everyone who writes about risk communication (Sandman 1987; Otway and Wynne 1989; Pidgeon, Kasperson, and Slovic 2003) emphasizes that effective risk communication is rarely a one-way process of the experts persuading the non-experts – and this is certainly not done by providing more facts and more reasons to accept the facts. Effective risk communication, on the other hand, is more likely to be a two-way dialogue between expert and non-expert. As François Boucher explains in chapter 11 in this book, this process begins with and is contingent upon the experts, and especially the front line clinicians, paying more attention to, and appreciating the relevance of, all the factors that form the perceptions on both sides. A conversation between professionals and those hesitant about vaccination needs to start by making explicit the underlying issues at work in the perception of the risks on the part of both parties. The disagreement is not just about science. It is, as I have tried to show, about such things as the special responsibility

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for the vulnerable person’s and the parent’s agency, trust in science and the institutions that use science as the major rationale for their policies, voluntariness and control over risk, distribution of risk and benefits, and the influence of religious and cultural convictions, among other things. The problem is that, in contrast to science, there is no consensus in our society about the underlying values that should inform these non-scientific aspects of acceptable risk. Not only is there no consensus on the underlying values, neither is there any agreement about what counts as a “rational” way to resolve our differences of opinion about underlying values. In chapter 1 of this volume, Paul Bramadat identifies the “crisis of truth,” which is one of the most important cultural shifts in our society influencing attitudes towards health care practices, including vaccination. Bramadat quite rightly sees this crisis as involving scepticism towards all forms of knowledge, including science. However, probably most of those in our society who believe in the rational priority of science and evidence-based medicine would hold that when it comes to questions of values, ethics, religion, aesthetics, and other non-scientific issues, there are, as he says, “many ways of knowing.” We do debate these questions regularly in our media, but we usually do so by trying to have a “fair representation” of differing viewpoints on these questions, and we leave it to the audiences to “decide for themselves,” recognizing that we cannot agree on a correct answer. This is why public officials, health professionals, and others responsible for public health are drawn to the ideal of “science-based” decision-making around health risk questions. These professionals have been trained in, and have come to identify with, issues that are reducible to science. Within that world, there is a common vocabulary, a common set of assumptions, and common criteria for judgment. This is why it is so tempting for risk experts to reduce all the important issues to science, despite the clear fact that many dimensions of risk management are not scientific. Indeed, most of the factors in the questions about acceptable risk are essentially matters of values – not matters of science. If they are not matters of science, and not subject to the same kind of agreedupon methodological approaches, is there any way to resolve them? First of all, it is critically important that these value factors not be hidden from the public discussion, as they usually are. If we start with the assumption that questions like whether vaccinations are “safe,” or whether they are the best way to handle threats to individual and public health, are only matters of science, then we will fail to get at many of the real issues behind dissenting points of view. We may, in fact, fail to address some of the most important factors that form people’s opinions on these matters. If we stick to the assumptions that those who reject the majority consensus on the value of vaccination simply do not understand or appreciate the scientific evidence concerning its effectiveness (and the risks of

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adverse effects) and that the solution to this is more and better science education, we will likely not make much progress in resolving the debate. Many of the real issues will remain hidden. Yes, there is much scientific ignorance involved in the debate, and science education is important. But it cannot substitute for addressing the other issues. These need to be made transparent. Second, once it is agreed that the non-scientific factors in the debate are important and need to be addressed, we need to know how to do this in a constructive way. Is it possible to get beyond the widely held view in our society that, because these are questions of value, they are all relative to individual, subjective opinion or relative to esoteric religious faiths and are therefore not subject to reasonable discussion or resolution? I do not wish to make the argument that these questions are subject to resolution in the same way that questions of science and empirical fact are. But, as we argue in this volume, it is possible to have reasoned, civil discussions in which we learn from each other and, in the process, alter our opinions, sometimes gaining a measure of respect for the ways that others see the issue. There are ways to carry on these reasoned discussions in public forums, in the media, and in the private counselling sessions, where professional and patient seek a decision concerning their own health, the health of a dependent, or public health. In order for this to happen constructively, however, both the experts and the lay participants in the discussions need to be informed, not only on the crucial matters of science but also on the crucial matters of values – including those values rooted in or influenced by religious convictions, texts, sensibilities, habits, and communities. These latter questions can be debated within the confines of respectful and reasoned argument. There can be both learning and persuasion in the process. This is the best way forward in the vaccination hesitancy debate. NOTES 1 An example of this can be seen in the health and environmental regulatory systems of Canada, the U.S., and most of the G20 countries. These countries abide by international agreements (WTO, FAO, OIE) to base their approval of food, drugs, therapeutics, and other products upon strictly “science-based risk factors,” excluding all other social, cultural, ethical, or religious considerations. As a clear example, the Canadian Food Inspection Agency and Health Canada are not permitted, by their commitment to “science-based” regulation, to base approval of genetically modified (GM) animals in the marketplace on the premise of whether the GM animal is considered acceptable to most Canadians based on animal welfare (ethical) considerations (Brunk and Hartley 2012).

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2 Of course, the assumption that these issues are all value free is highly questionable. The idea that risk assessment can be a value-free empirical science has itself been shown by many analysts to be unsustainable. Normative considerations enter into nearly every aspect of this exercise. This is not the place to discuss these issues. Readers interested in pursuing them can read Brunk, Haworth, and Lee (1991). 3 Ibid. 4 Albeit tthese psychological factors are recognized as tendencies that developed in the human psyche because they had great adaptive value in the evolution of the species (Kahneman 2011). 5 This is why comparative risk arguments for accepting unwanted risk are almost always ineffective. Promoters of technologies that are perceived as unsafe typically make the argument that the risk of their technology is no higher than risks the people they are trying to persuade already accept in their lives: “You drive a car. You are far more likely to die in your car than you are from the effects of my technology (e.g., radiation, chemical exposure, etc.).” The logic here is, “You accept risk x which is as high as or higher than my risk y. Therefore, you should accept my risk y.” Of course, a perfectly reasonable response to this argument is, “Gee, you mean I’m already bearing risk x? That’s enough for me. I sure don’t want to double my total risk burden by adding your risk y.” This explains why the risk comparison argument is rarely persuasive in public risk debates. 6 Moral theorists have argued for centuries about whether this is a morally defensible point of view. It is the fundamental disagreement between “consequentialist” (e.g., utilitarian) moral theories and “non-consequentialist” (e.g., rule-based, or virtue-based) theories. For the latter, people generally have a greater responsibility for the moral authenticity of their own actions than they do for the preventable consequences of the actions of others. Whichever of these competing outlooks are philosophically more defensible, it seems clear that the dominant moral sentiments in most cultures (and reflected in the risk perceptions discussed here) reflect strong aspects of the latter perspective. 7 For an account of how this played out in the case of Dow Corning’s defective silicone breast implants, see Brunk (1997).

REFERENCES Boholm, A. 1998. “Comparative Studies of Risk Perception: A Review of Twenty Years of Research.” Journal of Risk Research 1 (2): 135–63. http://dx.doi.org/10.1080/ 136698798377231. Brunk, C. 1997. “Silicone Breasts.” In Mad Cows and Mother’s Milk: The Perils of Poor Risk Communication, edited by D. Powell and W. Leiss, 99–120. Montreal: McGillQueen’s University Press.

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Brunk, C., and S. Hartley. 2012. Designer Animals: Mapping the Issues in Animal Biotechnology. Toronto: University of Toronto Press. Brunk, C., L. Haworth, and B. Lee. 1991. Value Assumptions in Risk Assessment. Waterloo, ON: Wilfrid Laurier University Press. Dubé, E., M. Vivion, C. Sauvageau, A. Gagneur, R. Gagnon, and M. Guay. 2015. “‘Nature Does Things Well, Why Should We Interfere?’: Vaccine Hesitancy Among Mothers.” Qualitative Health Research 26 (3): 411–25. http://dx.doi.org/10.1177/ 1049732315573207. Editors of The Lancet. 2010. “Retraction – Ileal-Lymphoid-Nodular Hyperplasia, NonSpecific Colitis, and Pervasive Developmental Disorder in Children.” The Lancet 375 (9713): 445. http://dx.doi.org/10.1016/S0140-6736(10)60175-4. Fischhoff, B. 1998. “Risk Perception and Communication Unplugged: Twenty Years of Process.” In The Earthscan Reader in Risk and Modern Society, edited by R. Lofstedt and L. Frewer, 133–45. London: Earthscan. Fischhoff, B., P. Slovic, and S. Lichtenstein. 2000. “Weighing the Risks: Which Risks Are Acceptable?” In The Perception of Risk, edited by P. Slovik, 121–36. London: Earthscan. Fischhoff, B., P. Slovic, and S. Lichtenstein, S. Read and B. Combs. 2000. “How Safe Is Safe Enough? A Psychometric Study of Attitudes toward Technological Risks and Benefits.” In The Perception of Risk, edited by P. Slovik, 80–103. London: Earthscan. Frewer, L.J., and S. Miles. 2001. “Risk Perception, Communication and Trust. How Might Consumer Confidence in the Food Supply be Maintained?” In Food, People and Society: A European Perspective of Consumers’ Food Choices, edited by L. Frewer, E. Risvik, and H. Schifferstein, 401–13. Berlin: Springer. http://dx.doi. org/10.1007/978-3-662-04601-2_24. Frewer, L.J., R. Shepherd, and P. Sparks. 1994. “Biotechnology and Food Production: Knowledge and Perceived Risk.” British Food Journal 96 (9): 26–32. http://dx.doi. org/10.1108/00070709410072562. Graffeo, M., L. Savadori, L. Lombardi, K. Tentori, N. Bonini, and R. Rumiati. 2004. “Trust and Attitude in Consumer Food Choices under Risk.” Agrarwirtschaft 53 (8): 319–27. Guay, M., M. Ghorbel, J. Lemaire, E. Cadieux, J. Désilets, P. Clément, C. Vanier, S. Briand, E. Dubé, C. Boulet, et al. 2014. “Vaccine Hesitation among Quebec Parents of Children Aged 2 Months to 5 Years.” Poster presented at the Canadian Immunization Conference, Ottawa, ON, 2–4 December. Kahneman, D. 2011. Thinking Fast and Slow. New York: Farrar, Strauss & Giroux. Kahneman, D., P. Slovic, and A. Tversky, eds. 1982. Judgment under Uncertainty: Heuristics and Biases. New York: Cambridge University Press. http://dx.doi. org/10.1017/CBO9780511809477.

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McDaniels, T.L., M.S. Kamlet, and G.W. Fischer. 1992. “Risk Perception and the Value of Safety.” Risk Analysis 12 (4): 495–503. http://dx.doi.org/10.1111/j.1539-6924. 1992.tb00706.x. McMurray, R., F.M. Cheater, A. Weighall, C. Nelson, M. Schweiger, and S. Mukherjee. 2004. “Managing Controversy through Consultation: A Qualitative Study of Communication and Trust around MMR Vaccination Decisions.” British Journal of General Practice 54 (504): 520–5. Mill, J.S. 1859. On Liberty. London: Longman, Roberts & Green. Otway, H., and B. Wynne. 1989. “Risk Communication: Paradigm and Paradox.” Risk Analysis 9 (2): 141–5. http://dx.doi.org/10.1111/j.1539-6924.1989.tb01232.x. Petts, J., and S. Niemeyer. 2004. “Health Risk Communication and Amplification: Learning from the MMR Vaccination Controversy.” Health Risk & Society 6 (1): 7–23. http://dx.doi.org/10.1080/13698570410001678284. Pidgeon, N., R.E. Kasperson, and P. Slovic, eds. 2003. The Social Amplification of Risk. Cambridge: Cambridge University Press. http://dx.doi.org/10.1017/ CBO9780511550461. Pligt, J. 1998. “Perceived Risk and Vulnerability as Predictors of Precautionary Behaviour.” British Journal of Health Psychology 3 (1): 1–14. http://dx.doi. org/10.1111/j.2044-8287.1998.tb00551.x. Raithatha, N., R. Holland, S. Gerrard, and I. Harvey. 2003. “A Qualitative Investigation of Vaccine Risk Perception amongst Parents Who Immunize Their Children: A Matter of Public Health Concern.” Journal of Public Health 25 (2): 161–4. http://dx.doi.org/10.1093/pubmed/fdg034. Rescher, N. 1983. Risk: A Philosophical Introduction to the Theory of Risk Evaluation and Management. Washington, DC: University Press of America. Sandman, P.M. 1987. “Risk Communication: Facing Public Outrage.” Environmental Protection Agency Journal 13: 21. Sen, A. 1985. “Rationality and Uncertainty. Theory and Decision.” Journal of the American College of Toxicology 18: 109–27. Singelenberg, R. 1990. “The Blood Transfusion Taboo of Jehovah’s Witnesses: Origin, Development and Function of a Controversial Doctrine.” Social Science & Medicine 31 (4): 515–23. http://dx.doi.org/10.1016/0277-9536(90)90048-W. Sjöberg, L. 2000. “Factors in Risk Perception.” Risk Analysis 20 (1): 1–12. http://dx.doi. org/10.1111/0272-4332.00001. Slovic, P. 1987. “Perception of Risk.” Science 236 (4799): 280–5. http://dx.doi. org/10.1126/science.3563507 – 2000. “Perceived Risk, Trust and Democracy.” In The Perception of Risk, edited by P. Slovik, 316–26. London: Earthscan. – ed. 2001. Smoking: Risk, Perception, and Policy. Thousand Oaks, CA: Sage Publications, Inc. http://dx.doi.org/10.4135/9781452232652.

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Thompson, P.B. 1986. “The Philosophical Foundations of Risk.” Southern Journal of Philosophy 24 (2): 273–86. http://dx.doi.org/10.1111/j.2041-6962.1986.tb01566.x. Tillich, P. 1957. Dynamics of Faith. New York: Harper and Row. Tversky, A., and D. Kahneman. 1974. “Judgment under Uncertainty: Heuristics and Biases.” Science 185 (4157): 1124–31. http://dx.doi.org/10.1126/ science.185.4157.1124. von Winterfeldt, D. 1992. “Expert Knowledge and Public Values in Risk Management: The Role of Decision Analysis.” In Social Theories of Risk, edited by S. Krimsky and D. Golding, 321–42. London: Praeger. Wakefield, A.J., S.H. Murch, A. Anthony, J. Linnell, D.M. Casson, M. Malik, M. Berelowitz, A.P. Dhillon, M.A. Thomson, P. Harvey, et al. 1998. “Illeal-LymphoidNodular Hyperplasia, Non-Specific Colitis, and Pervasive Developmental Disorder in Children.” The Lancet 351 (9103): 637–41. http://dx.doi.org/10.1016/S01406736(97)11096-0. Wildavsky, A., and K. Dake. 1990. “Theories of Risk Perception: Who Fears What and Why?” Daedalus 119: 41–60. Wynne, B. 2006. “Public Engagement as a Means of Restoring Public Trust in Science – Hitting the Notes, but Missing the Music?” Community Genetics 9 (3): 211–20.

HISTORY

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4 Learning from Smallpox Inoculation Refusal: Early Scientific Debates and the Evolution of Vaccine Refusal réal roy

Introduction The eradication of smallpox in 1980 was the result of an intensive international vaccination campaign initiated in 1967 by the World Health Organization (WHO). This successful eradication continues to provide vaccination advocates with the most compelling evidence of the power of vaccinations to prevent infectious diseases (Khan and Smith 2010). Rapid decreases in the number of cases of poliomyelitis, measles, mumps, and rubella following the development and introduction of vaccines against these diseases have also provided solid evidence of vaccination as a successful means to control infectious diseases in Canada1 and the United States. Despite these impressive data supporting the effectiveness of vaccination campaigns, there is a growing global trend towards hesitancy about vaccination. For instance, between 1991 and 2004 in the United States, non-medical exemption rates for mandatory vaccination at school entry increased from 0.98 to 1.48 per cent with a greater increase in reasons of philosophical or personal beliefs than religious ones (Omer et al. 2006).2 Because people with similar cultures live in the same community and often share communal spaces like churches or temples of worship, rates of exemptions may be much higher than 1.5 per cent. For example, in some counties in the state of Washington, which has an average exemption rate of 7.4 per cent, the exemption rate may be as high as 26 per cent (Omer et al. 2009). In Canada, similar clustering of unimmunized communities exists as well but remains largely undocumented. Such refusal may have few immediate consequences, but if it bespeaks a trend (see chapter 7 by Guay, Dubé, and Laberge in this volume), as it has over the last two decades, it may lead to outbreaks of previously controlled infectious diseases with very serious consequences, including long-term disability or even death.

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For example, the rubella outbreak of 2005 in Ontario first occurred in a Christian school where up to 60 per cent of students were not vaccinated because a majority were adherents of the religious doctrines of a particular group within the Dutch Reformed Church. Within this community, it is common to believe that humans should not interfere with God’s preordained plans for their bodies (Basrur 2005; Sibbald 2005). As other authors in this book have demonstrated, today such refusal is often equated with an anti-scientific attitude. Actually, vaccination refusal is not new nor is it always anti-scientific in nature. In fact, refusal dates back to the prehistory of vaccination with the development of the smallpox inoculation procedure, also called variolation, in eighteenth-century Europe.3 The aim of this chapter is to provide some historical and scientific perspective on the phenomenon of vaccination refusal and the scientific debates surrounding the origin and evolution of the concepts and techniques associated with vaccinations.4 More specifically I intend to show that scientists always had a complex part to play in these discussions, whether at the time of smallpox inoculation and vaccination, or subsequently in the development of vaccines against other diseases. I first discuss smallpox inoculation, which refers to the procedure of transmission of human smallpox from ill to healthy individuals, after which I examine smallpox vaccination, which refers to the transmission in healthy human individuals of cowpox virus rather than human smallpox. This early history of vaccination should help remind us that today’s vaccination hesitancy in Canada (Guay et al. 2015) remains a challenge in the general population even though the development of microbiology as a science makes us collectively more knowledgeable today about human immunity, the nature of microbial diseases, and their application in vaccination than at the time of Jenner and Pasteur. Variolation or Smallpox Inoculation in China and Europe (1721–1798) Objection to vaccination is as old as vaccination itself. In 1798 Edward Jenner (1749–1823)5 published an account of his experiments demonstrating how cowpox vaccinations can protect against human smallpox, as we will discuss in the next section. This would become, according to Pasteur, the scientific foundation of vaccination. But prior to Jenner’s experiments, it is important to discuss in this section the technique of variolation or smallpox inoculation practised in Europe at the time of Jenner. Before Jenner’s vaccination experiments, medical doctors protected healthy individuals from smallpox disease by infecting them with human smallpox

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collected from pustules from infected but recovering individuals. The controlled inoculation of smallpox has its origin in China. According to an extensive search of early Chinese literature on this subject, Needham, Gwei-djen, and Sivin (2000) found that the first and earliest account of the method of smallpox inoculation was written by Wan Quan in 1549 and entitled Heart Method for Smallpox. The first extant written record, which actually described smallpox inoculation, was in a 1695 medical treatise by Zhang Lu (1617–1700), a famous doctor at the time. He described three different methods of inoculation: (1) putting a piece of cotton imbued with smallpox pus into the nostril of the healthy child, (2) using squama, a dry, scale-like part of the skin from the site of infection, or (3) making the healthy child wear clothes that had been worn by a child who had contracted the disease. The techniques were increasingly refined in China in the eighteenth century. A 1713 work described a fourth method using powdered squama blown into the nostril through a thin silver tube. By the end of the eighteenth century, variolation or smallpox inoculation was divided into two schools: the Huzhou school, which preferred the use of fresh pus, and the Songjiang school, which preferred to use older, medically treated squama or “cooked pox” (Leung 2011). In Europe, inoculation was first introduced and publicized by Lady Montagu in England in 1721, although earlier Timoni of Athens (in 1714) and Pylarini of Venice (in 1716) communicated some accounts of the procedure (Baxby 1981). While in Constantinople, Lady Montagu saw a technique performed by Circassian women in which they made incisions on smallpox pustules on an infected individual and used these incisions as inocula of smallpox viruses to be transferred by incision on the arms of healthy individuals who wanted to be protected against smallpox. Although the person receiving the smallpox developed the disease, it was claimed that the inoculated smallpox was milder than what was called the “wild” smallpox. At that time, this claim was never substantiated by any data.6 In spite of this lack of initial data, Lady Montague was so impressed by the technique that she asked a doctor to perform the technique on one of her children when she returned to England in 1721; later, when the experiment was successful, she became convinced of the benefit of the technique. Even though many objected to the new technique as soon as it was introduced, it gained fame immediately because of the support of a distinguished scientist and physician, James Jurin (1684–1750). A strong proponent of Newton’s physics, Jurin trained as a physician and became interested in the new technique of smallpox inoculation. Jurin was the first to establish a systematic collection of data on death following smallpox epidemics and smallpox inoculations (Diderot and D’Alembert 1778). Jurin and his associates sought to establish evidence in support of the new technique to

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counter physicians and lay people who doubted the benefit of giving the disease in order to be protected against it. Jurin understood that the best way of convincing people of the benefit of inoculation was to provide unambiguous data showing that there were fewer people dying of artificial (or inoculated) smallpox than of natural smallpox infections. Such data, he assumed, would make the widespread adoption of the technique more palatable for physicians, politicians, and the public. Collection of these data was facilitated by hospitals dedicated to the treatment of smallpox. The Smallpox Hospital, St. Pancras, founded in London in 1746 treated patients with natural smallpox, but also performed inoculation on healthy patients. Following Jurin’s method, the hospital kept good records on the success or failure of the treatment by distinguishing between people with natural infection and those who had received smallpox inoculation. These data became central in the debate surrounding the benefit and safety of smallpox inoculation, and formed the basis for a long essay by D’Alembert (1713–1787)7 advocating such inoculation (D’Alembert [1821] 1967). Unexpected support for smallpox inoculation came from a letter written by Father François d’Entrecolles (1664–1741)8 in 1726 in Beijing, China, that described the Chinese smallpox inoculation method (Vissière and Vissière 1979). The piece was written in response to a letter published in the Jesuit journal Mémoires de Trévoux9 in 1724 that described the new smallpox inoculation procedure (or variolation) recently introduced in Europe. Father d’Entrecolles explained the method called zhongdou10 using three written accounts from physicians practising in the Forbidden City in Beijing. The letter demonstrated that Chinese physicians were aware, at the beginning of the eighteenth century, of variations among different smallpox viruses, with some being more virulent than others. These variations related to the amount of time required for skin pustules to develop. The French philosopher Voltaire11 was quick to cite this letter in his XIe Lettres philosophiques as evidence that the newly introduced method of inoculation in Europe had been practised for a hundred years in China. In addition, the letter is briefly cited in a long article in the Encyclopédie of Diderot and D’Alembert (1778). Such a lengthy article indicates how important the debate on smallpox inoculation may have been at the time for medical sciences. This debate has no doubt provided the key foundation of the new scientific method as applied to medicine and promoted during the Enlightenment. Support and Opposition for Smallpox Inoculation during the Enlightenment Prior to the publication of the Encyclopédie, D’Alembert had communicated his thoughts on inoculation to the Académie royale des sciences de Paris in 1760

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(D’Alembert [1821] 1967). In this text, he reviewed arguments in favour of smallpox inoculation in detail, and raised concerns that are reminiscent of the arguments one hears among vaccine-hesitant communities today. This and the 1778 article in the Encyclopédie presented an excellent summary of the history of the new medical technique. Moreover, the Encyclopédie article also provided a list of twelve major objections made against smallpox inoculation at that time in Europe, as well as refutations of each one of these concerns. The objections listed below were subdivided into physical and moral objections, and a consideration of these provides a good indication of the historical debates around smallpox inoculation as a precursor to vaccination during most of the eighteenth century. 1. The disease transmitted by inoculation is not smallpox. While the Encyclopédie makes the distinction between artificial and natural smallpox infection, the article noted that the inoculated smallpox resulted in the same disease as the naturally occurring smallpox. 2. Inoculated smallpox is more dangerous than natural smallpox. Jurin’s pioneering work on the epidemiology of smallpox and smallpox inoculation was designed to show that smallpox inoculation was safer than natural smallpox infection. In the Encyclopédie article, the refutation was based mainly on the data collected between 1745 and 1763 at the Smallpox Hospital in London clearly showing lower fatality rates following inoculation compared with natural smallpox infection.12 3. Inoculation cannot prevent recurrence of smallpox. The objection is refuted by the number of people who were never reinfected with smallpox after being inoculated. Lasting immunity was an important rudimentary concept at the time of the debate on smallpox, but was hardly a new idea.13 4. Transmission of other diseases (e.g., typhus) by inoculum. Although the Encyclopédie also refutes this claim, today we know this objection to be true following the emergence of evidence, at the beginning of the twentieth century, regarding the transmission of Salmonella when smallpox vaccination was not performed with an aseptic technique.14 Knowing this, it is quite likely that smallpox inoculation may have caused other diseases than smallpox. 5. Inoculation leaves wounds and tumours. According to the article in the Encycoplédie, there was no evidence that smallpox inoculation left wounds and tumours in the patient. According to the authors, if such accidents happened following an inoculation, they were much less serious than the wounds caused by natural smallpox. 6. Inoculation is against nature. This concern was refuted on the basis that inoculation caused less discomfort than bloodletting, which was considered at the time a “natural” method to cure diseases.

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In addition to the above six objections, there were six additional objections that were at the time considered to be objections more moral than physical in nature. These included:  7. Inoculation usurps God’s right to give or prevent disease.  8. It is not allowed to give a cruel disease to someone who may never have it.  9. Death following smallpox inoculation prevents a child from becoming an adult and contributing to society. 10. Smallpox inoculation increases natural smallpox.15 11. One is not allowed to do a small harm for a larger good. 12. Inoculation is a moral harm because some people have died of it. In the Encycloplédie, the seventh objection is refuted by simply stating that God has also provided us with reason and therefore the capacity to survive many challenges created by disease and other forms of misfortune. Nonetheless, as Bramadat (chapter 1) and others in this book have noted, this objection is heard even today: during the rubella outbreak in 2005 in Woodstock, Ontario,16 members of the Dutch Reformed Church used this argument to explain their refusal to vaccinate their children. Those in favour of smallpox inoculation refuted the eighth objection with a risk/benefit argument. Given that the risk of death from inoculation was less than the risk from natural infection, people in favour of inoculation felt that from society’s perspective it would allow more people to survive and contribute to society. Another moral objection in the eighteenth century was that a small harm should not be allowed for a larger good. People in favour of inoculation felt it was similar to the measures taken to prevent the progression of fire (whereby some part of a forest or village was destroyed on purpose, but robbed the fire of fuel), which caused a small harm to some people but benefited the greatest number by avoiding fire. One final objection raised by people against smallpox inoculation was the moral harm caused by the death of some inoculated patients. Since this method was not perfect at the time, some critics claimed that it was not morally acceptable to risk the life of a healthy person by subjecting him/her to inoculation when no one can dispose of his/her own life. This objection was refuted on the basis that other accepted medical procedures such as bloodletting were not without risk. Edward Jenner and Smallpox (1798–1885) As a physician in the last decade of the eighteenth century, Edward Jenner (1749–1823) was aware of the risk associated with smallpox inoculation

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(or variolation) (see note 4). He remembered being frightened as a child when he was inoculated with human smallpox (Barquet and Domingo 1997). Jenner became aware that some farmers never developed human smallpox even though they had been repeatedly in contact with family members who had it. Jenner was fascinated by this lack of infection. One such farmer, Merret, never became sick with human smallpox. As he had told Jenner, he was first infected with cowpox during a 1770 cowpox outbreak while he was working as a servant on a farm where there were infected cows. Afterward, members of Merret’s family were inoculated with human smallpox. Despite this exposure to human smallpox from his family members, Merret never developed the disease (Jenner 1966, 9). The best explanation for Merret’s immunity, according to Merret himself, was that cowpox had somehow protected him against human smallpox. It is well-known now that the cowpox virus is a close relative of the human smallpox virus. This genetic relatedness is sufficiently close to provide humans infected with cowpox a protection (immunity) against human smallpox. In Jenner’s period no one knew about the scientific basis of immunity or the nature of the agents causing smallpox or cowpox. Jenner’s genius was to find a way to test this common belief of Merret and other farmers in his community by a simple experiment. Both the farmers and Jenner noticed that people who had been infected by the relatively mild cowpox from an infected cow would develop a natural lifelong protection against smallpox. After describing several cases of people who had contracted cowpox (or vaccinia in Jenner’s terminology) and were not affected by smallpox in subsequent epidemics, Jenner came to the case of the young girl Sarah Nelmes who became sick with cowpox in May 1796. As a consequence of the cowpox infection, Sarah had developed a lesion with some pus on the arm. On 14 May, he made an incision on the arm of the girl and transferred some of the infected tissue to an eight-year-old boy. The boy had never been previously infected by human smallpox. Jenner let the cowpox develop and form a scab on the arm of the boy. Then, in order to prove that the boy was now protected against human smallpox, Jenner inoculated human smallpox virus from an infected individual into the vaccinated boy; the boy never developed human smallpox.17 Jenner repeated this procedure on a few others and concluded that the cowpox had triggered a protective mechanism against human smallpox in the boy (Jenner [1798] 1966). It may appear strange today that Jenner inoculated human smallpox in a boy who had received a shot of cowpox, but such inoculation or variolation had been practised for seventy years prior to Jenner’s experiment (see previous section on variolation). Jenner’s description of his experiment using Sarah Nelmes’ cowpox infection in An Inquiry into the Causes and Effects of the Variolæ Vaccinæ (1798), became the foundation for smallpox vaccination campaigns using cowpox

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virus. Following Jenner’s definition, vaccination thus became the intentional transmission of cowpox (see Guay et al. 2015) to distinguish it from the practice of inoculation with human smallpox, or variolation. According to Jenner, a vaccine was a preparation of a cowpox virus placed into the arm of a human to trigger in that human a protection against the disease caused by human smallpox. The drastic reduction in the number of casualties and serious disease using smallpox vaccination compared to smallpox inoculation greatly improved the safety of the procedure to acquire immunity against smallpox. It was also one of the first examples of the use of experiments in addition to observation and measurements (time, size of pustule) as part of a scientific method applied to the field of medicine.18 Despite the improvement over smallpox vaccination, the new method rapidly became a controversial method. The debate lasted throughout most of the nineteenth century and even into the beginning of the twentieth century among the public and medical practitioners (Baxby 1981; Durbach 2005). Objections were similar in many ways to those associated with smallpox inoculation except that cowpox, at least, was not a human disease like smallpox. However, interestingly, it was precisely the fact that cowpox was an animal disease that became a reason for some to refuse the vaccine. For some people opposed to smallpox vaccination, it was morally wrong to put animal flesh in the human body. In order to understand these claims, we have to remember that at the beginning of the nineteenth century there was a great controversy about the nature of species and evolution that was not settled until 1859, when Charles Darwin (1809–1882) proposed a mechanism of natural selection to explain the transformation of species in his book On the Origin of Species (Darwin [1859] 2006). Retrospectively, Jenner’s smallpox vaccination was the perfect illustration of the close connection between animals and humans described by Darwin. Alfred Russell Wallace (1823–1913), the celebrated co-discoverer of natural selection with Darwin and one of the most innovative (and controversial) thinkers of the Victorian era, believed that smallpox vaccination was both useless and dangerous (Wallace 1898).19 His statistical work on the issue led him to conclude that there were flaws in the medical arguments supporting smallpox vaccination and the compulsory vaccination acts promulgated by the British House of Commons at the time. Pro-vaccinationists argued that vaccination was effective, smallpox was ubiquitous, and the risk of catching smallpox and dying from the disease greatly outweighed the rare complications from vaccination itself. Anti-vaccinationists – including Wallace – produced a compelling risk calculus of their own. They argued that smallpox infection was not ubiquitous and infection was not inevitable; vaccination did not provide sufficient protection; it was as risky as smallpox itself; and there were safer and more reasonable

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alternatives to a state-enforced compulsory medical intervention. The debate over the evidence supporting vaccination was extremely sophisticated. Wallace’s investigations into vaccination reflected his approach to the natural and social world, or what has been described as his evolutionary cosmology. By embedding natural selection within the framework of a theistic evolutionary teleology, Wallace viewed seemingly disparate domains (human evolution, spiritualism, land reform, medical ideas about humankind’s natural habitat) as interconnected and falling within the proper purview of the scientists. Thus, he was opposed to any simplistic or unicausal treatment of complex phenomena, including the control of an evolving disease with a single intervention such as vaccination. In The Wonderful Century, Wallace (1898) argued that mandatory vaccination programs were among the century’s most egregious failures. Wallace rejected the idea that medical expertise, especially clinical data tabulated by practitioners should be unquestionably privileged – especially over liberty. He argued that vaccinators could not objectively assess the effects of vaccination because they had a financial stake in supporting the practice. He also argued that specialization and vaccination expertise created systemic biases that were embedded in vaccination statistics to favour evidence-supporting vaccination (Fichman and Keelan 2007). In his rejection of compulsory vaccination, Wallace used science to advocate for a different approach to medicine with a greater emphasis on healthy habits. Wallace’s understanding of the complex interaction between living organisms and their environments helped him understand the importance of thinking about human diseases and treatments in the context of the relationships between human and microbial pathogens within biological communities. Such a point of view is increasingly important today, as molecular genetic and genomic data on infectious agents such as viruses and bacteria clearly show their evolution interacts with their environment and can make it problematic to develop effective vaccines against some diseases.20 A New Science that Supports and Expands Vaccination Much of the debate surrounding vaccination in the nineteenth century was related to a lack of scientific understanding of the agents causing infectious diseases or the nature of the immune response triggered by these agents in the human host. This lack of knowledge limited the development of risk assessment in vaccination. This last section aims at briefly describing how Pasteur, Koch, Metchnikof, Beijerinck, and others developed microbiology as a key science providing the basis for safe vaccine development with reduced risk. Much of the scientific agenda in microbiology as it relates to vaccination has been driven

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by questions raised by earlier vaccine refusal and hesitancy. Despite the important scientific progress we have witnessed, when it comes to vaccine uptake and risk assessment, we need to look beyond science at broader social and political forces. Although Darwin did not cite Jenner’s work on vaccination, Pasteur (1822– 1895) did when he started publishing his results on the first vaccination attempts in fowl in 1878–80 (Pichot 1999). Louis Pasteur and Élie Metchnikoff (1845–1916) in Paris with Robert Koch (1843–1910) in Berlin, Martinus Beijerinck (1851–1931) in Delft, and Sergei Winogradsky (1856–1953) in Paris and St. Petersburg established the basis of a new science known as microbiology that would profoundly change the treatment of infectious diseases not only at the individual level (medicine) but also at the level of human populations and communities (epidemiology and public health). Microbiology played a key role in establishing the validity of vaccines, provided the basis to expand Jenner’s discovery beyond smallpox, and provided the knowledge to address some issues raised by anti-vaccinationists (Moulin 1996; Madigan et al. 2010). The development of microbiology as a science at the end of the nineteenth century by Pasteur and his colleagues mentioned above, along with many others, provided much of the evidence to support the claim of vaccination as a valid and safe method to control infectious diseases. Microbiology also provided the technical means to develop new vaccines against a variety of diseases that were being discovered at the same time. This new science also provided the methods necessary for the production of safe vaccines. Finally it provided the scientific basis for a better understanding of immunology and genetics, which in turn created criteria for exclusion of individuals for whom vaccination may present a greater risk. One remarkable aspect of Pasteur’s work was his creativity in designing experiments to further the development of animal and human vaccines, which provided an experimental basis still used today. For instance, in the development of a vaccine against fowl cholera (Pichot 1999), he exposed the isolated infectious bacteria to heat, thus inactivating their ability to replicate. The inactivated bacteria could then be safely inoculated into fowl without causing illness because the bacteria could not replicate; instead, the bacteria remained whole and were recognized by the immune system, thus providing the fowl with longlasting immune protection. This was the first of several veterinary vaccines that Pasteur and his team developed against animal diseases. These vaccines also became models to establish the foundation of vaccine development for humans. This work provided a means to (1) produce new vaccines by transforming the infectious agents using physical or chemical means and (2) test new vaccines for safety and efficacy using animal models. These methods continue to form

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the basis for the development of new vaccines and drugs. Pasteur’s method of attenuation of bacteria by heat was adapted to other infectious agents to create other vaccines. Indeed, the first vaccine developed against polio by Jonas Salk was produced by inactivation of the poliovirus using formaldehyde (see Naus, Law, and Rinfret in chapter 9 of this volume).21 Pasteur developed a vaccine against the rabies virus in 1880 through a series of experiments using the infected brain tissue of a child who died of rabies (Pichot 1999). Unlike Jenner’s cowpox, which is a natural variant of human smallpox, the rabies virus developed by Pasteur was selected through a complex laboratory procedure and not simply isolated from a different host. In that sense Pasteur is credited with developing the first human vaccine and not simply using a natural disease variant. It is a variation of this approach that inspired the work of Salk and Sabin in their work on vaccines against poliomyelitis in the 1950s. One striking aspect of Pasteur’s work was how little he seemed to worry about the species barrier. Being a chemical engineer by training at a time when chemistry was focused on understanding the myriad transformations of organic molecules, Pasteur used rabies-infected brains and spinal cords of monkeys − that he prepared after various modifications from heat and desiccation − to inoculate rabbits, uninfected monkeys, and humans. He used infected material because he was unable to isolate the infectious agent of rabies,22 and experimented with these materials as if there was no fundamental difference between a rabbit, a monkey, and a human.23 Although some contemporary ethicists would question Pasteur’s approach, in his laboratory rabbits were nothing more than a convenient vessel, an instrument used to develop new organic chemicals to prevent a disease. In addition to vaccine development, understanding immunity became important in the use of safe vaccines. Pasteur also provided the inspiration for the work of Elie Metchnikoff (1845–1916) on phagocytosis, a central aspect of the cellular theory of immunity, which explains how a vaccine can trigger longlasting immunity (Conn and Conn 1929). This theory of immunity emphasized the role of white-blood cells in the immune response against infectious agents such as viruses and bacteria. Vaccines work because the white-blood cells (leucocytes and especially lymphocytes) are able to feed on the infecting bacteria and viruses and produce the immunity. This increasing understanding of the immune system has led to the development of today’s vaccines against the most common life-threatening diseases and continues to enable work on new vaccines for other diseases. An important goal of the development of microbiology in vaccination has been the reduction of risk. Offit (2005) provides an excellent overview of such development for the polio vaccine. Much of vaccination hesitancy today

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is risk assessment as Brunk (chapter 3) and others in this book demonstrate. The notion of risk assessment can be traced back to d’Alembert and Bernouilli, who discussed these challenges in the eighteenth-century debate surrounding smallpox inoculation (see section “Variolation or Smallpox Inoculation in China and Europe” above). For instance D’Alembert ([1821] 1967, 468) quotes adversaries to smallpox inoculation, admitting that risks are different when comparing inoculation and no inoculation: Because in assuming … that the number of those who die of smallpox are forty times as great than the number of those who die of inoculation, does it follow that both risks are the same? The nature of one is quite different than the other; as little as we can suppose the risk of dying of the inoculation, the one who is inoculated face this risk in a short period of time of fifteen days, one month at the most; on the contrary, the risk of dying of natural smallpox will be over a lifetime, and becomes ever smaller with each year and each month.24

Using the science of microbiology, it has become increasingly possible to better establish the risk associated with a specific vaccine. In the case of the polio vaccine, the risk that an oral vaccine will lead to serious side effects is estimated to be one in four million. This is a very small and acceptable risk at the scale of a human population the size of Canada. In this case, the benefit outweighs the risk associated with the vaccine. Yet, parents who may be unfortunate enough to have a child suffering from such side effects understandably worry about any amount of risk. This is one of the reasons Canada uses the even safer inactivated polio vaccine (IPV). Along these lines, D’Alembert ([1821] 1967, 480) already raised this difference in risk assessment between the state and parents of children: The interest that the state may have in having inoculation performed has been too much confused with the interest individuals may have in it; both interests maybe quite different. For instance in the hypothesis that we just formulated, it is certain that the State would benefit from the inoculation, since in sacrificing one citizen out of five, the society would be assured to keep his other members healthy and vigorous until the age of hundred years old; however we just saw that in this hypothesis, there might not be any citizen courageous enough or reckless enough, to exposed himself to such an operation where he would risk one against four to lose his life.25

Such difference between the state and the individual may explain some hesitancy toward vaccination in a context in which infectious diseases have been largely reduced by vaccination, antibiotics, and overall hygiene.

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Today, political factors often complicate public perceptions of vaccinations. A good example of this is the smallpox vaccination campaign in the United States in 2003. This vaccination campaign targeting medical and military personnel was decided by presidential order under the administration of George W. Bush. At that time a number of political leaders in the United States feared that a bioterrorist attack against military personnel would spread smallpox. While the military personnel included in the first phase (97 per cent) largely followed the presidential order, most of the medical personnel (less than 10 per cent) did not want to get vaccinated. It was clear that the risk of a smallpox epidemic from a biological attack was minimal compared to the potential sideeffects of the vaccine.26 Such ill-conceived and poorly executed vaccination campaigns run the risk of increasing vaccine hesitancy in the general public. Conclusion Science typically relies upon observation, measurement, and experimental data to inform a model of reality based on these data. Sometimes complex and ambiguous scientific data do not lead to a consensus on a single model. In this context, hesitant people today are not so different from people confronted with inoculation or vaccination two hundred years ago, despite great scientific advances in microbiology. Smallpox vaccine was novel in the nineteenth century and people were afraid. Today some people are similarly afraid of newer vaccines designed to fight measles, mumps, rubella, influenza, or human papilloma virus (HPV). If some of these newer vaccines (measles, mumps, rubella) are supported by a large scientific consensus, others (influenza and HPV) are subject to ongoing debate even in the scientific community. In this sense, there is nothing new about the phenomenon of vaccination hesitancy and refusal. From the inoculation techniques practised in China and later in Europe in the eighteenth century, to the development of smallpox vaccination at the beginning of the nineteenth century, to the introduction of new vaccines developed to prevent diseases caused by other infectious agents in the twentieth century, some amount of vaccine hesitancy and refusal has always been evident. Such hesitancy may have been positive in driving much of the research agenda in vaccination science. To a large extent, science has provided answers to a good deal of past vaccine hesitancy. Unfortunately, much of vaccination resistance today is often based on dubious information that is often not scientifically founded or on beliefs that cannot be addressed by a scientific approach. Unfortunately, hesitancy and refusal have real consequences, as we see with disease outbreaks. This chapter reminds us that when considered historically, those forms of vaccine hesitancy that are founded on scientifically sound concerns may provide

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the path to innovation. While almost all contemporary worries and conspiracies about vaccines are not well-founded, history demonstrates that vaccination hesitancy may nonetheless continue to ensure that scientists remain mindful of both the anxieties that swirl around vaccines and the need to be ever-vigilant in our approach to the unintended consequences of the vaccine research and public health programs based on vaccines. This brief overview on the origin of vaccination and some historical factors in the phenomenon of vaccination hesitancy should underscore the need for a better understanding of the natural history of viruses and vaccines and their interaction with human populations and for the sociocultural environments in which these are interpreted.

NOTES The author would like to thank Laurence Monnais for her feedback and suggestions in the writing of this chapter. 1 For a discussion of vaccination and vaccine preventable diseases in Canada, see chapter 8 by Bettinger and MacDonald in this volume. 2 We use these data in the United States because in Canada vaccination is not generally mandatory and such data on vaccination hesitancy vary between provinces. 3 In this chapter I will use “smallpox inoculation” (also called variolation) for the transmission of human smallpox (variola virus) from ill to healthy individuals. “Smallpox vaccination” refers to transmission of cowpox (vaccinia virus). At the time, Jenner used the term vaccinia, derived from the Latin for cow (vacca), to describe cowpox, a disease affecting cows and giving only mild symptoms in humans. So, “smallpox vaccination” refers to the transmission to healthy individuals of what we know today to be a different pox virus that caused the disease in cows. It was thought at Jenner’s time and until the beginning of the twentieth century that vaccinia and cowpox were the same. Today, based on molecular analysis of the vaccine, it is know that vaccinia and cowpox viruses are different. The natural host of vaccinia is unknown. But the natural host of cowpox virus remains cows. Various hypotheses to explain the origin of vaccinia were reviewed by Baxby (1981). 4 A second historical article in this volume will more specifically discuss some determinants of vaccination refusal in Canada for three types of vaccines: smallpox, diphtheria, and poliomyelitis. 5 Edward Jenner was a British physician who was the first to demonstrate experimentally that an animal disease (cowpox) when injected into a human could provide protection against a human disease (smallpox).

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6 James Jurin (1684–1750) started collecting data on variolation after 1722–3. 7 Jean Le Rond D’Alembert was a highly respected French mathematician, philosopher, and co-editor with Denis Diderot of the first French general encyclopedia. 8 François D’Entrecolles was a French Jesuit who arrived in China in 1698 and provided contributions in the form of letters on various aspects of China, like the production of porcelain (one of his most famous letters) in 1707 or infanticide in 1720. 9 Mémoires de Trévoux, published between 1701 and 1762 by the Parisian Jesuits at the Louis-le-Grand College, played an important role in providing a range of articles on history, literature, and natural sciences, well beyond theology and spirituality. For more details see Taurand (1993). 10 These accounts suggest that Chinese practitioners had grasped the concept of attenuation by subjecting smallpox material to elevated temperatures to reduce the pathogenicity of the smallpox inocula to be used on humans (Needham et al. 2000). Pasteur reproduced such attenuation methods for vaccine development more than a century later. 11 Nom de plume of François-Marie Arouet (1694–1778), French writer, historian, and philosopher famous for his criticism of the Catholic Church and his fondness of China. 12 Of 6,456 patients with natural smallpox, 1,634 died (25.3 per cent or 1 in 4) but only 10 died from 3,434 patients inoculated with smallpox (0.2 per cent or 1 in 340) treated over an 18-year period (1745–63). For these data see D’Alembert ([1821] 1967). 13 Discussing the plague of Athens Thucydides (c. 460–c. 400 BC) suggested in his History of the Peloponnesian War (Thucydides 1928) that protection against a disease maybe acquired: “… it was more often those who had recovered who had pity for the dying and the sick, because they had learnt what it meant … for the disease never attacked the same man a second time, at least not with fatal results” (Book II, LI, 351). 14 Some vaccines today still contain a small amount of antibiotics to prevent the growth of pathogenic bacteria in the vaccine preparation; for instance, neomycin in the MMR (measles, mumps, and rubella) vaccine. 15 For a reader today this objection would fit better in the physical rather than moral objection category. In the eighteenth century artificial smallpox inoculation was propagated by human will and not God’s will. In that sense, addition of smallpox disease by human propagation in addition to natural smallpox was considered morally objectionable to many people. 16 See Basrur (2005) for a complete description of this outbreak. 17 While this experiment would be considered unethical today, it is important to remember that smallpox inoculation was an accepted medical procedure in 1776.

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18 Jenner never thought of using animal models, which was another important aspect of modern medical research. As part of the development of vaccines, Pasteur pioneered the use of animal models in his research (Pichot 1999). 19 For a review of Wallace’s opposition to vaccination, see Weber (2010) and Fichman and Keelan (2007). 20 One has only to think of the flu vaccine that needs to be developed every year based on dominant strains found in Asia. The evolution of influenza virus in various hosts (for instance, birds, humans, and pigs) makes it impossible to think of the eradication of the disease using vaccine. Since the early 1990s microbiologists have been examining the way diseases that may have been controlled through vaccine or antibiotics for a period of time have evolved in such a way that conventional medical techniques are no longer entirely sufficient. 21 This inactivated polio vaccine is the vaccine that is part of the normal schedule of child immunization in Canada and in many other countries. 22 At the time of Pasteur’s work there was no clear concept of a virus distinct from bacterium – an insight that did not emerge until André Lwoff formulated such concept in 1957. 23 Implicitly Pasteur was applying the theory of natural selection by using the body of different species as different environments from which were produced variants that could then be tested as vaccines. This would not have been possible at the time of Jenner and the natural historians of the previous century who saw insurmountable boundaries between species. 24 “Car en supposant … que le nombre de ceux qui périssent de la petite vérole soit quarante fois aussi grand que le nombre de ceux qui meurent de l’inoculation, s’ensuit-il que les deux risques soient entre eux dans le même rapport? La nature de l’un et de l’autre est bien différente; quelque petit que l’on veuille supposer le risque de mourir de l’inoculation, celui qui se fait inoculer se soumet à courir ce risque dans un court espace de quinze jours, dans celui d’un mois tout au plus; au contraire, le risque de mourir de la petite vérole naturelle se répand sur tout le temps de la vie, et en devient tout autant plus petit pour chaque année et pour chaque mois.” Translated by the author. 25 “On a trop confondu l’intérêt que l’État en général peut avoir à l’inoculation, avec celui que les particuliers y peuvent trouver; ces deux intérêts peuvent être fort différents. Par exemple dans l’hypothèse que nous venons de faire, il est certains que l’État gagnerait à l’inoculation, puisqu’en sacrifiant un citoyen sur cinq, la société serait assurée de conserver ses autres membres sains et vigoureux jusqu’à l’âge de cent ans; cependant nous venons de voir que dans cette hypothèse, il n’y aurait pas de citoyens assez courageux ou assez téméraires, pour s’exposer à une opération, où il risquerait un contre quatre de perdre la vie.” Translated by the author. 26 MacKenzie (2003).

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REFERENCES Barquet, N., and P. Domingo. 1997. “Smallpox: The Triumph over the Most Terrible of the Ministers of Death.” Annals of Internal Medicine 127: 635–42. http://dx.doi. org/10.7326/0003-4819-127-8_Part_1-199710150-00010. Basrur, S.V. 2005. Building the Foundation of a Strong Public Health System for Ontarians: Annual Report of the Chief Medical Officer of Health to the Ontario Legislative Assembly. Toronto: Ministry of Health and Long-Term Care. Baxby, D. 1981. Jenner’s Smallpox Vaccine: The Riddle of Vaccinia Virus and Its Origin. London: Heinemann Educational Books. Conn, H.W., and H.J. Conn. 1929. Bacteriology. 4th ed. Baltimore, MD: Williams and Wilkins Company. D’Alembert, J. [1821] 1967. Réflexions sur l’inoculation. Vol. 1 of Oeuvres complètes de D’Alembert. Geneva: Slatkine. Darwin, C. [1859] 2006. The Origin of Species. In From So Simple a Beginning: The Four Great Books of Charles Darwin, C. Darwin (author) and E.O. Wilson (editor), 1706 p. New York: Norton. Diderot, D., and J. D’Alembert, eds. 1778. Encyclopédie: ou, Dictionnaire raisonné des sciences, des arts et des métiers / par une société de gens de lettres; mis en ordre & publié par m. Diderot; & quant à la partie mathématique, par m. d’Alembert. 36 vols. Geneva: Pellet. Durbach, Nadja. 2005. Bodily Matters: The Anti-Vaccination Movement in England 1853–1907. Durham, NC: Duke University Press. Fichman, M., and J. Keelan. 2007. “Resister’s Logic: The Anti-Vaccination Arguments of Alfred Russel Wallace and Their Role in the Debates over Compulsory Vaccination in England, 1870–1907.” Studies in History & Philosophy of Biological and Biomedical Sciences 38 (3): 585–607. http://dx.doi.org/10.1016/j. shpsc.2007.06.006. Guay, M., E. Cadieux, J. Désilets, P. Clément, C. Vanier, S. Briand, J. Lemaire, C. Michaud, E. Dubé, C. Boulet, N. Boulianne, and M. Landry. 2015. Quel est le meilleur mode d’organisation de la vaccination des enfants de 0–5 ans au Québec? Enquête auprès des parents. Quebec: Institut national de santé publique du Québec. Jenner, E. [1798] 1966. An Inquiry into the Causes and Effects of the Variolae Vaccinae, a Disease Discovered in Some of the Western Counties of England, Particularly Gloucestershire and Known by the Name of Cow Pox.75. Facsimile reprint. London: Dawsons of Pall Mall. Khan, A.S., and G.L. Smith. 2010. Scientific Review of Variola Virus Research, 1999– 2010. Geneva: World Health Organization. Leung, A.K.C. 2011. “‘Variolation’ and Vaccination in Late Imperial China, ca. 1570– 1911.” In History of Vaccine Development, ed. S.A. Plotkin, 5–12. New York: Springer. http://dx.doi.org/10.1007/978-1-4419-1339-5_2.

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MacKenzie, D. 2003. “US Smallpox Vaccination Plan Grinds to a Halt.” New Scientist, 22 August. http://www.newscientist.com/article/dn4074-us-smallpox-vaccinationplan-grinds-to-a-halt. html#.VTyM1YdZqfQ. Madigan, M.T., J.M. Martinko, D. Stahl, and P. Clark. 2010. Brock’s Biology of Microorganisms. 13th ed. San Francisco: Benjamin Cummings. Moulin, Anne-Marie. 1996. L’Aventure de la vaccination. Paris: Fayard. Needham, J., L. Gwei-djen, and N. Sivin. 2000. Biology and Biological Technology, Part 6, Medicine. Vol. 6 of Science and Civilisation in China. Cambridge: Cambridge University Press. Offit, P. 2005. “The Cutter Incident, 50 Years Later.” New England Journal of Medicine 352 (14): 1411–2. http://dx.doi.org/10.1056/NEJMp048180. Omer, S.B., W.K. Pan, N.A. Halsey, S. Stokley, L.H. Moulton, A.M. Navar, M. Pierce, and D.A. Salmon. 2006. “Nonmedical Exemptions to School Immunization Requirements: Secular Trends and Association of State Policies with Pertussis Incidence.” Journal of the American Medical Association 296 (14): 1757–63. http:// dx.doi.org/10.1001/jama.296.14.1757. Omer, S.B., D.A. Salmon, W.A. Orenstein, M.P. deHart, and N. Halsey. 2009. “Vaccine Refusal, Mandatory Immunization, and the Risks of Vaccine-Preventable Diseases.” New England Journal of Medicine 360 (19): 1981–8. http://dx.doi.org/10.1056/ NEJMsa0806477. Pichot, André, ed. 1999. Pasteur. Écrits scientifiques et médicaux. Paris: GarnierFlammarion. Sibbald, B. 2005. “Rubella Outbreak.” Canadian Medical Association Journal 172: 1673. Taurand, S. 1993. “Une expérience de presse au XVIIIe siècle: les Mémoires de Trévoux (1701–1762).” Revue francaise d’histoire du livre 62: 271–98. Thucydides. 1928. History of the Peloponnesian War. Translated by C.F. Smith. Vol. 1. Loeb Classical Library. Cambridge, MA: Harvard University Press. Vissière, I., and J.-L. Vissière, eds. 1979. Lettres édifiantes et curieuses de Chine par des missionaries jésuites 1702–1776. Paris: Garnier-Flammarion. Wallace, A.R. 1898. The Wonderful Century: Its Successes and Its Failures. London: Swan Sonnenschein & Co. http://dx.doi.org/10.5962/bhl.title.39656. Weber, T.P. 2010. “Alfred Russel Wallace and the Antivaccination Movement in Victorian England.” Emerging Infectious Diseases 16 (4): 664–8. http://dx.doi.org/ 10.3201/eid1604.090434.

5 Not without Risk: The Complex History of Vaccine Resistance in Central Canada, 1885–1960 heather macdougall and laurence monnais

Introduction Recent writing on the history of opposition and resistance to immunization by Eula Biss (2014), Mark Largent (2012), and Andrea Kitta (2012) has focused on contemporary events and has argued that today many parents are perturbed by the number of shots – and the rationale for them – presented by health professionals. Indeed, Largent states that modern opposition to immunization began in the early 1990s and has intensified as a result of middle-class parents’ access to the Internet and the influence of media stars who claim their children have been damaged by vaccines that have overloaded their immune systems. Kitta’s work supports many of his arguments and demonstrates that even health professionals are sceptical of the current immunization schedule. But the most challenging point that Largent makes is that as vaccines evolve from preventive therapies to enhancement (which he defines as avoidance of natural aspects of childhood such as the chickenpox infection) and the already conflicted debate intensifies, many parents may shift from vaccine hesitancy to vaccine resistance and from vaccine resistance to outright opposition. As Brunk and Boucher note in chapters 3 and 11, respectively, the challenge for health professionals and parents, then, is to find common ground to discuss how best to protect children while acknowledging the limitations of available safe and effective vaccines to prevent deadly contagious diseases. But are these issues new? What does the past have to tell us about the present? What role might religious and cultural factors have played in developing vaccine hesitancy? How have previous policy decisions and immunization practices affected contemporary responses?1 The history of opposition to vaccination offers important lessons about the role of culture, class, gender, religion, and ideology in personal and public decisionmaking (Conis 2014; Durbach 2005; Bliss 1991). By comparing and contrasting

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the development of public and biomedical support for vaccination against smallpox and diphtheria in Ontario and Quebec during the opening decades of the bacteriological revolution (1880–1900s) and its heyday in the 1950s and 1960s, we will trace the impact of evolving scientific knowledge on the practice of immunization. We will also examine the many forms of rhetoric – ­including religious and cultural discourses – used by opponents and supporters during this period when public health policies developed and flourished at the provincial and municipal levels to determine the types of messages being delivered and what their impact was. We will demonstrate how the conflict between pro- and anti-vaccination forces during the late nineteenth century shaped the rhetoric of their twentiethcentury successors. By focusing on specific Canadian examples, we will enable our readers to understand the many factors that produced the apparent consensus of what we might call the “golden age of vaccination acceptance” (1920–90s). Such an analysis reveals that a wider cultural context has contributed to the scepticism and resistance we see growing in contemporary culture. We will also use this study to demonstrate how groups that are supportive – and those that are suspicious – of vaccines have both used history to buttress their arguments and will indicate how the rhetoric used to describe specific historical events has shaped contemporary discourse. Smallpox Outbreaks, the Birth of Public Health, and Compulsory Vaccination Throughout the nineteenth century, periodic epidemics of smallpox provided opportunities for Canadian supporters and opponents of vaccination to engage in both rhetorical and physical conflict. An international epidemic in 1871–2 prompted the formation of the first Canadian anti-vaccination society in Montreal. Led by Dr. Joseph Emery Coderre, a noted Montreal medical educator and journal editor, the group tried to gain support from the Montreal medical establishment in the mid-1870s. At a series of meetings during a prolonged period of smallpox outbreaks, the doctors debated the merits and shortcomings of vaccination in both the French and English medical societies. The debate focused on pro-vaccination claims that the procedure prevented the disease or mitigated its ravages. As articles in L’Union médicale du Canada (L’UMC) and the Canadian Journal of Medicine and Surgery demonstrated, critics did not think that the available statistics proved either argument.2 Coderre, who believed that two of his children had died as a result of vaccination, based his crusade against the procedure on the grounds that it put putrid matter into the bodies of innocent children. In 1875, one anti-vaccine activist, Dr. A. Dagenais, wrote an open letter to Coderre published in L’UMC in which he commended

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Coderre for his bravery and charged that his opponents could be divided into four groups: the indifferent who would not rethink their support of vaccination; those who lacked the courage to admit that vaccination was a therapeutic failure; les Anglais, the anglophone community in Quebec, who viewed vaccination as part of their cultural identity because Jenner was English; and finally, the doctors who profited from their work as public vaccinators. Next, Dagenais argued that “vaccination … is in contradiction with what science tells us; it is not efficient and it is always harmful leading to dangerous side-effects, even death.” He concluded that part of his condemnation by observing that “the vaccine is actually a virulent, pustular, and contagious disease that is the result of the inoculation of a virus into one’s body” (L’UMC 1875, 56).3 Then he cited British authorities who no longer supported vaccination because of concerns about the quality of the lymph (fluid circulating in the lymphatic system) and its impact on children’s health. He ended by discussing the September 1874 public event at which a Montreal baby had been examined by a group of doc tors in order to determine whether it had been harmed by vaccination. Although the majority refused to say that the child had been badly affected by the proce­ dure, Dagenais concluded that they would not be successful in their strategy because, “thanks to your research and your publications, the people will understand that vaccination could be responsible for the introduction into one’s body of scrofula germs, syphilis, consumption, and all the constitutional diseases for that matter” (L’UMC 1875, 61). This comprehensive condemnation highlighted the main criticisms that would dominate the discussion until the end of the nineteenth century. The early anti-vaccination doctors not only provided graphic descriptions of failed vaccinations which either killed or severely affected their victims, but also criticized their colleagues who supported the procedure for their inability to see that smallpox was a “filth” disease that should be dealt with through urban sanitation improvements, better living and working conditions, and adequate wages (Keelan 2004; Farley, Keating, and Keel 1987). This recognition of the social determinants of health indicated that these doctors ought to have been able to make common cause with the practitioners who were demanding the creation of municipal and provincial health services. In effect, the critics were challenging the scientific foundation of the procedure and the claims for its safety and efficacy. As Keelan (2004) argues, the critics made valid points regarding the purity of the vaccine and its safe administration with the result that many doctors hesitated to comply with the statute requiring compulsory infant vaccination.4 At the time, arm-to-arm vaccination was still widely used, leading to further risks of blood-borne contamination. In addition, many parents objected to their children being used as the

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source of the arm-to-arm transmission of vaccine lymph or to their children being vaccinated with lymph taken from the body of a poor or orphaned child. Class and species transgression were regarded as equally objectionable. During the 1870s, Montreal’s doctors were also debating the human or bovine sources of the vaccine and the value of revaccination because, although Jenner had claimed vaccinia produced lifelong immunity, cases among the previously vaccinated raised concerns about its longevity (Farley et al. 1987). While these scientific and medical concerns challenged health professionals, many parents questioned whether the state in the guise of city vaccinators had the right to compel them to vaccinate their children. When Bishop Bourget and other ultramontane clergy were asked to comment on vaccination, they declined to enter the debate believing that men of science must resolve the issue (Bliss 1991, 194). Clearly trust and public and medical understanding of the principles of immunity were lacking at this point. But did culture, religion, and ethnicity also play a role? The Montreal pro-vaccination forces, however, had a supportive Catholic mayor, Dr. William Hingston, in office from 1875 to 1877. He and the city council supported the creation of public vaccinator positions and attempted to enforce the 1861 statute requiring compulsory infant vaccination (Farley et al. 1987). During the controversy over the merits of vaccination, Dr. A.B. LaRoque, Montreal’s beleaguered officier de santé (medical officer), called on his colleagues for support. Letters to L’UMC informed readers that one city vaccinator who had vaccinated 700–800 children in May 1873, visited them nine days after the event to provide the vaccination certificate if the operation had been successful and noted that even with that number, no “accident” had been reported that could have been related to the vaccine (L’UMC 1875, 62). Other reports from rural areas highlighted similar successes and one supporter offered to send LaRoque vaccine “points” loaded with smallpox vaccine derived from the French Beaugency strain (1866)5 used by Montreal’s department which had effectively stopped the outbreaks in his area. The provaccination group failed to counter the opposition because many of its criticisms were accurate. However, equally important, the ideological foundation on which compulsory vaccination rested was not clearly articulated. In this Victorian era, how greatly did the public, government officials, or the medical profession truly believe in sacrificing individual liberty for the common good? If a family’s home was their castle, did the state have the right to enter it and compel vaccination? The increasing urban and industrial development in Quebec and Ontario prompted Canadian sanitary enthusiasts to establish local organizations to cultivate public support for urban infrastructure such as pure water and effective

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waste removal. Control of communicable diseases was also a key component of urban growth, and until Confederation, Canadian colonies had adapted British approaches and legislation to deal with the matter (Canadian Public Health Association 2010). After 1867, each province began to develop more permanent bodies to respond to demands for healthy towns and cities. In Ontario, the sanitarians6 began to push for a provincial board of health similar to those in operation in American states (The Sanitary Journal 1876: 273–6). After a sustained campaign based on the results of an 1878 sanitary survey of the province, the Mowat government passed legislation to create a Provincial Board of Health (PBH) in 1882. Initially this medically dominated advisory body was expected to encourage cities and towns to create local boards of health that would supervise sanitary improvements and control communicable diseases. Smallpox was the most feared infectious disease, and an outbreak in Windsor in 1882 provided the PBH with an opportunity to demonstrate its worth by compelling the city government to support its medical health officer (MHO) in his efforts to control the outbreak and prevent the disease spreading across the border. Realizing that Ontarians needed to be educated in the principles of disease prevention and control, the PBH issued circulars on these topics. The technical language of these documents indicates that they were aimed at medical professionals and municipal officers, not the public. To educate the public, the PBH turned to Sanitary Conventions like the one held in St. Thomas in 1883; the highlight at the event was a temporary smallpox isolation hospital tent that could be used wherever and whenever it was needed (Craig 1983). In 1884, the PBH sent its secretary, Dr. Peter Bryce, to eastern Ontario to deal with a smallpox outbreak in Hungerford Township. A firm believer in vaccination, Bryce immediately ordered the new local medical officer to isolate disease victims and quarantine their families and contacts while providing house-to-house vaccination. These prompt, if rather draconian, actions controlled the outbreak and set the pattern for future government action. But Bryce had discovered that supplies of high-quality vaccine were difficult to locate in a timely fashion, the public was unenthusiastic about compulsory vaccination or revaccination, and anti-vaccination views existed and were promoted by a local healer (Craig 1983). Armed with the revised powers granted to the PBH by the 1884 amendments to the Ontario Public Health Act, Bryce and the PBH continued to monitor local disease-control efforts and, based on the results of their experience in Hungerford, were prepared to override individual scruples and local authorities to protect the public’s health. From their standpoint, protecting the province was more important than respecting local jurisdiction and people’s culture. Their new powers would be tested during the 1885 smallpox epidemic in Montreal and throughout Quebec.

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Adopting the Sanitary Ideal

Smallpox in Montreal: Politics, Religion, and Public Health The 1885–6 smallpox epidemic, which reputedly killed 3,164 people in Montreal out of a total population of 168,000, has been the subject of numerous books and articles (Williams 2011; Keelan 2004, 2006; Bliss 1991), the documentary Outbreak: Anatomy of a Plague (Lewis 2010), an exhibition at Montreal’s McCord Museum in 2005 entitled Montreal in 1885, a City of Contrasts, and a video game, “L’épidémie de variole, 1885” (http://www.jeuxpac.net/ jeu2d-intro-f.html). Beginning with the misdiagnosis of the initial patient, a case which originated in Chicago in February 1885 and travelled by train to Montreal, where the patient was sent to the Hôtel-Dieu hospital for treatment, primary efforts to control the disease were isolation and disinfection. As additional cases appeared, a tragic decision to disperse the patients from the HôtelDieu hospital where a female servant had died of the disease in early April was made. This began the spread of smallpox in the city, which had not seen a single case placed in its closed civic smallpox hospital since 1881. As soon as local health authorities realized the extent of the outbreak, they imposed both control and prevention measures. Unfortunately, the decision to use smallpox vaccine locally produced by Dr. William Bessey (who had been producing it since 1878) did not prevent the disease from spreading; instead, it caused infection and death among the orphans and other children to whom it was administered because either the vaccine was contaminated or the injection site (the arm) was not cared for properly (Keelan 2004; Bliss 1991).7 The failure of the vaccine early in the epidemic prompted vaccination critics such as Dr. Coderre and his English-speaking counterpart, Dr. Alexander Milton Ross, to create pamphlets and posters alerting parents to the dangers of the procedure. In response, the local health committee stopped vaccination during the summer and the morbidity and mortality rates climbed as unvaccinated infants and children fell ill with the disease and succumbed. Throughout the outbreak, cultural and religious tensions were starkly illustrated. The English-language press charged that the epidemic was expanding because of French Canadian resistance to vaccination. The Montreal Herald was particularly racist8 and accused the city council of cowardice, claiming, “Your French operatives [workers], they are dirty, they do not vaccinate, and you have this pestilential disease always with you, and always will so long as your Council and English-speaking people act as they do” (Bliss 1991, 120). The paternalistic and imperialistic tone of these claims, and the willingness to impose mandatory vaccination in spite of opposition from the francophone community, was

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intensified by the increasing conflict over the fate of Louis Riel. The Riel uprising had begun in March 1885 and was viewed as an attempt to protect French and Catholic rights to equal opportunities in Western Canada by francophones and as an act of treason by many anglophones. Why should Montreal’s workingclass families support compulsory vaccination when their co-religionists were being denied their rights in the West? How could they express their discontent when few were eligible to vote and the business community set the terms of municipal health policy and governance? And did the conflict between English and French newspapers fuel the spread of myths and rumours that contributed to francophone opposition? Initially, resistance occurred as parents refused to vaccinate their children and undergo revaccination themselves. Resistance escalated into violence with riots occurring in September; these led to attacks on health department offices and threats against city officials (Bliss 1991, 161–83). Since many resisters appeared to believe that the epidemic was mild, some sought to have their children infected since smallpox conferred lifelong immunity on survivors while vaccination clearly did not. Was this French Catholic fatalism or a realistic assessment of the best chance of survival? The role of the Catholic clergy reflected francophone public opinion. Some parish priests rejected vaccination, even though the francophone neighbourhoods were the site of rapidly rising case and death rates, but senior clergy led by Bishop Fabre issued instructions to advocate for vaccination during homilies. In addition, several religious processions were held to seek God’s assistance in ending the outbreak (Bliss 1991, 18–94). In September 1885, a temporary PBH was created to respond to demands for a more effective campaign against the epidemic since Montreal inhabitants were being quarantined in nearby provinces and states. Under the direction of Dr. Hingston, the PBH encouraged the reconstitution of Montreal’s Bureau de Santé (Montreal’s health board, first established in 1868 under the supervision of LaRocque) with citizen representation from the business and commercial groups. A Montreal vaccination committee promoting house-to-house vaccination was set up, and as it proceeded with its work, it ran into opposition from the recently formed Canadian Anti-Vaccination League (AVL). Using vaccine bought from a Boston-based vaccine institute, the Montreal vaccination committee tried to reassure citizens that the problems had been resolved and they and their children would receive high-quality cow lymph rather than human lymph. When this failed to sway the public, the committee turned to employers who mandated vaccination as a condition of work and to the newly created Sanitary Court where recalcitrant citizens who refused vaccination or failed to comply with isolation, quarantine, or removal of patients to the

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smallpox hospitals were tried and convicted, being given either a fine or jail time (Keelan 2004). For members of the AVL, these economic and legal actions demonstrated the refusal of the state to undertake the necessary sanitary measures to control the outbreak and the ineffectiveness of vaccination as a preventive measure. In his 21 August 1885 pamphlet, the title of which reads STOP!! A Pitiable Sight! People Driven like Dumb Animals to the Shambles!! Tyranny of Doctorcraft!!! Ross stated, Fathers and Mothers of Montreal, you are committing a crime against your innocent and helpless children by forcing this FILTHY, USELESS and DANGEROUS RITE upon them … YOU are contaminating the bodies of your children with the rotten pus of a diseased beast … The prevailing talk about pure vaccine is deceptive; you might as well talk about pure filth. (1)9

First, Ross challenged parents to protect their children, and then he argued that like bloodletting and other “modern delusions” (Ross 1885, 1), vaccination would soon be a historical artefact. However, by 1885 the germ theory of disease was starting to bear fruit as the research results from the Pasteur and Koch laboratories were regularly announced and the medical profession recognized the potential for disease prevention. Vaccination, however, represented an older, empirical approach to disease control that required greater understanding of the principles of immunity than existed at the time. Practitioners like Ross and Coderre represented a generation trained before new concepts such as bacteriology and antisepsis emerged. Without incontrovertible proof that vaccination prevented smallpox and both believing that they had lost children after the procedure, they had scientific and personal grounds for their opposition. Ross continued by pointing out that the epidemic had produced a panic which, in turn, led to the demand from employers that all workers provide proof of vaccination. He charged that this was an “OUTRAGE ON PERSONAL LIBERTY!” and that “It is in vain for working-men and women to plead that they do not believe in the efficacy of Vaccination. They are told that they may believe what they like, but that Vaccinated THEY MUST BE, or leave their employment, which to many of them means STARVATION!!” (Ross 1885, 2). He concluded his remarks with a critique of compulsory vaccination and a list of notable British, American, and German experts who condemned it. For francophones, Coderre, with several of his colleagues, created an anti-vaccination journal, L’Antivaccinateur canadien-français, whose first volume appeared on Christmas Eve 1885. It drew on Coderre’s earlier writings from the 1870s as

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well as on current examples of vaccine failures by including the names and addresses of francophone and anglophone children who had died as a result of vaccination. Both men encouraged opposition, but only Coderre was actually charged for failing to report a case of smallpox. Like other members of the AVL, Coderre received legal assistance from a noted Montreal lawyer and his case was suspended. Although he feared being charged for failing to vaccinate his children and was the subject of stories indicating that he had recently been vaccinated, Ross was never subjected to legal action (Keelan 2004). As Keelan (2004) argues, it is difficult to determine the impact of the antivaccination rhetoric on the outcome of the 1885 epidemic. Clearly there were many forms of cultural and religious resistance to state intervention that reflected the working-class’s determination to protect the integrity of their own and their children’s bodies. But as we see in the nineteen court cases for refusal to vaccinate, even those with strong legal and medical support often had to submit or face a fine. What did the authorities learn from this experience? In Montreal, the election of the next city council in March 1886 as the epidemic was ending meant that the Sanitary Court disappeared and the citizen component of the local board of health was not reconstituted. Instead, attention focused on the provincial legislature where efforts were underway to create a permanent PBH to ensure that future epidemics were handled more effectively. The creation of the Quebec Provincial Board of Health in 1886 prompted Ross and the AVL to demand that the legislature prohibit compulsory vaccination. The provincial secretary noted that this power was located in another statute and that the new board was intended to encourage the formation of local boards whose focus was sanitation and disease control (Pelletier 1940). However, the new board did begin the process of ensuring a supply of quality vaccine for Quebec by supporting the creation the same year of the Institut Vaccinogène (Institute for vaccine production) at Sainte-Foy, near Quebec City.10 By 1888 when Coderre died, smallpox was declining; it would continue to do so until the early twentieth century. Thus, although the 1887 Quebec law requiring compulsory vaccination of children was generally ignored, this subtle opposition was less of an issue for public health officials since smallpox outbreaks became less frequent until after 1900.

Smallpox in Ontario: Expanding State Action For Ontario, the 1885 epidemic was an opportunity to demonstrate the effectiveness of standard British and American approaches to communicable disease control, which included prompt quarantine of cases, isolation of victims in purpose-built facilities, and house-to-house vaccination in homes and

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­ orkplaces. Cities with rail connections to Montreal appreciated the appointw ment of Ontario provincial inspectors who examined goods and passengers before they left Montreal because they feared infection from contaminated products and people. But as the inspectors for Ontario and the nearby American states discovered, many travellers used false vaccination certificates or refused vaccination (Craig 1983). In cities and towns along the rail corridor, sporadic cases of smallpox generally prompted significant public demand for vaccination, and Ontario was now able to rely on locally produced lymph from Dr. Alexander Stewart’s Vaccine Farm in Palmerston (Spaulding 1989). Did this ensure public support? As Toronto’s MHO William Canniff discovered, failure to report cases often meant that potential contacts fled before he and his vaccinators could offer the procedure. The arrival of Alexander Ross in Toronto in 1886 meant that when the next smallpox outbreak occurred in 1888, Canniff not only had a vehement anti-vaccinationist agitating the city’s workers but also faced pressure from Secretary Bryce and the PBH to impose compulsory vaccination. Ever the political realist, Canniff refused to accept the Ontario board’s diktat and continued to offer free public vaccination at various stations and through house-to-house visitation (MacDougall 1981), thus laying the foundation for public immunization programs. His credo of “persuasion not coercion” would continue to dominate local health education efforts until large-scale outbreaks at the turn of the twentieth century once again prompted provincial health authorities to push for compulsion. During the 1890s, immigration to Canada began to increase. British immigrants seeking a better future in the Dominion arrived in large numbers, and among them were some ardent anti-vaccinationists. These individuals picked up the cause after Dr. Ross died in 1897 but with more vigour since the British Royal Commission investigation had resulted in the creation of a “conscientious objector” clause, which all but negated the impact of compulsory legislation in Great Britain (“The Daily Paragraph,” Toronto Star, 16 January 1899; Durbach 2005). Smallpox reappeared in both Ontario and Quebec in 1899, coming from the United States. Although both provinces now had provincial boards and vaccine farms, neither had effectively organized rural health. The lumber and mining camps in both provinces often had cases of smallpox, which spread to more settled areas as the workers dispersed at the end of the season (“Hold Out Your Arm,” Toronto Star, 1 February 1899). Tracking and controlling the spread of these disease outbreaks challenged local health officers and led them to discuss the various vaccination methods, types of lymph, and the impact of anti-vaccinationists. In 1900, Dr. Oldright of the PBH observed to his fellow health officers, “Of course it is not necessary to say anything to this audience as to the use of vaccination. We are one as to the principle of its benefits”

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(Association of Executive Health Officers of Ontario Annual Report 1900, 12). Indeed, as Toronto MHO Charles Sheard observed in his annual report to the city council (as reported in the Toronto Star), he could see relatively little antivaccination sentiment because “among the educated and well-informed the opposition to vaccination is infinitely less than among the ignorant and superstitious.” Having just vaccinated over 7,000 Torontonians without any problems, Sheard was critical of the anti-vaccinationists for showing “harrowing photographs of the permanent evil effects” of the procedure.11 From his standpoint, the views of experts from around the world clearly proved the efficacy of immunization (“City Milk Cans Spread Disease,” Toronto Star, 11 August 1900).

Anti-Vaccination Campaigns, 1901–1912: Action and Reaction The secretary-treasurer of the Toronto AVL disagreed. In March 1901, R.S. Weir argued that the Provincial Board of Health’s northern inspector was misdiagnosing smallpox cases in Sudbury. The heart of Weir’s criticism, however, was a condemnation of vaccination as a form of state-funded “blood poisoning” that had lasted for ninety years after Jenner’s discovery until improved vaccine production methods in 1891 had removed pus and other microbes. He linked the vaccine to increasing rates of tuberculosis and ended with a question: “Why, then, should our health (?) officers continue a practice fraught with such danger, when rigid sanitation and prompt quarantine (which are absolutely safe) would effectually stamp out the disease, as has been done in Leicester, England?” (“Against Vaccination,” Toronto Star, 23 March 1901). For the next five years, British-born anti-vaccinationists mounted a sustained campaign to eliminate compulsory vaccination as a requirement for school entry in Toronto. The holding of meetings and preparing of petitions that netted five to ten thousand names resulted in success in March 1906 when the Toronto Board of Education voted to rescind the requirement (“A War on Vaccination in the Public Schools,” Toronto Star, 28 February 1906, and “Sheard on Vaccination,” Toronto Star, 2 March 1906). MHO Sheard immediately condemned the Toronto Board of Education for this retrograde action by arguing that the nurses, orderlies, and medical staff at the smallpox hospital had all survived because they were vaccinated, and he noted that he himself had been vaccinated twenty-six times in one year and had been regularly revaccinated since with no ill effects (“Sheard on Vaccination,” Toronto Star, 2 March 1906). But as two Star editorials noted, the doctors had only themselves to blame because they had “made the prime mistake of despising the enemy” (“Vaccination,” Toronto Star, 7 March 1906). In response to concerns that anti-vaccinationists would respond to medical arguments “with

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abuse and imputation of selfish motives,” the editorialists agreed that there was “some ignorant prejudice against the medical profession” but still called upon the profession to explain its position. As they noted: “The case for vaccination rests not upon authority, but upon experience, and that experience can surely be set forth plainly for the benefit of those who are in doubt” (“A Case for Vaccination,” Toronto Star, 9 March 1906). This attempt to create an opportunity for dialogue did not succeed. Instead, representatives of both viewpoints took the opportunity to present their arguments again. R.S. Weir pointed out that school immunization was not compulsory in Britain because legislation there required infant vaccination (“The School Board re Vaccination,” The Globe, 31 March 1906). Julian Sale, an antivaccinationist, argued that the statistics which the pro-vaccinationists were using were incomplete and stated that claims of the effectiveness of the procedure were of small value to a mother whose child had died. Moving beyond the emotional issue, Sale included quotes from concerned public health officers regarding the strength of the Palmerston vaccine and its propensity to cause sore arms. In addition, he noted their worries about smallpox vaccine as a potential transmitter of tetanus – a problem which had occurred in the United States (“Mr. Sale on Vaccination,” Toronto Star, 24 March 1906; Willrich 2011). The AVL used their success with Toronto’s School Board to agitate for a change to Ontario’s Vaccination Act to establish a “conscience clause” to permit individuals and parents to make their choice without state compulsion and thus to end the class bias of the current system, which penalized workers and their families (“Want A Conscience Clause,” The Globe, 14 March 1906, and “Opposed to Vaccination,” The Globe, 4 April 1906). This rhetoric strongly echoed the views of British anti-vaccinationists and trade union leaders. How did the doctors respond? The members of the Ontario PBH were strongly supportive and Dr. Oldright responded to Sale’s letter by citing his own experience as a public vaccinator and practitioner with a large number of child patients to argue that he had only known one child already in ill health to suffer from vaccination while he had cared for smallpox patients who died. And turning to the claims that sanitation would prevent the disease, he cited the high death rate among the unvaccinated in Gloucester, England. He then recounted statistics from other British cities and from Galt, Ontario, to show the protective power of vaccination. He ended by noting the mildness of the disease in the first decade of the twentieth century but pointed out that the experience of American cities like Cleveland, Ohio, provided “warnings of the possibility of a change from mildness to virulence” (“The Business Man vs The Anti-Vaccinationist,” Toronto Star, 28 March 1906). Six years later, in 1912, the PBH persuaded the Whitney government to amend the Ontario

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Vaccination Act to permit local medical health officers to order mandatory vaccination during smallpox outbreaks. Since the provincial Public Health Act was also amended that year to prevent medical officers from being dismissed without approval by the PBH, the stage was set for confrontation between the rights of individuals and the right of the state to protect community health. This cultural gap remains the basis for the lack of communication between practitioners and patients, pro-and anti-vaccinationists, and the vaccine-hesitant and their expert advisers. In 1901, in Quebec, compulsory vaccination against smallpox was to be enforced, thanks to a new version of the Loi de santé publique (Public health law) because, although legislation requiring all children over three months be vacci­ nated had been passed in 1887, few parents had complied (Journal d’hygiène populaire, October 1887, 84). In the context of the updated Loi de santé publique, the city council of Montreal adopted three by-laws for the purpose of enforcing its requirements. By-law number 324, passed in November 1904, enacted that a child could not be admitted to school or a person work in a commercial or industrial establishment unless a certificate indicating a successful vaccination was provided (Groulx 1940). Due to lack of funding, the law was clearly not enforced until the late 1910s (Guérard 1996; Pelletier 1940), although the improvement of vital statistics records may have ensured better coverage of Quebec families (Journal d’hygiène populaire, November 1887, 106). Smallpox had reappeared in late 1899 and, by 1900, had spread into several communities. Diagnosis was dif­ ficult – some doctors explained this by the fact that the virus was “mild” compared to the 1885 strain; both pro- and anti-vaccination groups concluded that mass vaccination had already had an impact on the virulence of the disease (L’UMC 1900, 313).12 In 1901, M. Tellier, a member of Quebec’s National Assembly from Joliette, a small industry-oriented town in the Lanaudière region, brought in a bill entitled Loi amendant la loi concernant l’hygiène publique de Québec. This amendment was supposed to do the following: 1. remove the Conseil d’hygiène de la province’s … right to force municipalities to protect themselves against epidemics and specifically against smallpox epidemics …; 2. give municipal councils the right to decide for which groups vaccination should be mandatory; and 3. rescind legal clauses that forced parents to have their threemonth-old babies and ninety-year-old seniors vaccinated since there was an ongoing controversy about the effectiveness of vaccination. (L’UMC 1902, 158)

Tellier’s bill failed to pass, but it clearly showed that outside Montreal, public health was yet to be institutionalized and vaccination and revaccination were not yet popular public health measures.

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Battling Smallpox in a Postwar World: Toronto, 1919–1920 Endemic smallpox continued in the civilian population until November 1919 when the disease flared into epidemic proportions in Toronto. The city’s Medical Officer of Health (MOH), Charles Hastings, had just successfully battled the influenza pandemic of 1918 with strong support from citizens, the local board of health, and the city council (MacDougall 2007). He was highly regarded as a reformer and social activist and thus moved immediately to order vaccination of schoolchildren and to encourage public vaccination and revaccination. Using the 1912 Vaccination Act as the foundation for his actions, he attempted to persuade the city council to proclaim compulsory vaccination to stem the outbreak.13 His request was rejected twice and he was roundly condemned by several aldermen and city controllers for imposing “filthy, repulsive and dangerous” vaccination on “our pure little children.” As the number of cases escalated and home quarantine was imposed because the city’s smallpox hospital was too small to accommodate many patients, the AVL became highly active. Delegations attended Council meetings to present their views, held mass rallies on the steps of the city hall and in halls around the city, organized petitions, wrote letters to the editor, and even sent a member to confront the newly elected premier, Ernest Drury of the United Farmers of Ontario, to demand repeal of the Vaccination Act. All of this activity stemmed from their objection to the violation of personal liberty and many cited their experience as soldiers to justify their opposition to compulsion, arguing that such vaccination was a form of Kaiserism. Since Hastings and his supporters were using the successful vaccination statistics from the war years to buttress their arguments, both groups were completely at odds (Bator 1983). The AVL also charged that the epidemic had been manufactured to ensure that doctors made a profit as they had done during the influenza epidemic in 1918.14 The MOH had earlier refused to comment on a reporter’s query regarding the potential benefits of vaccination for private practitioners who charged between seventy-five cents and two dollars for the procedure (“Cases Reported 191 Smallpox in the City,” Toronto Star, 10 November 1919). Instead, he stressed to the public that the department’s twenty-seven vaccinators used pure glycerinated lymph from Connaught Laboratories to vaccinate children and adults (Health Bulletin November 1919).15 Hastings recalled the 1885 epidemic in Montreal and its high toll and indicated that he had been a public vaccinator during that outbreak and had been vaccinated himself twice during the current outbreak with no ill effects. But such personal experience was criticized by AVL members as indicating a lack of faith in the effectiveness of the procedure (“Voice of the People,” Toronto Star, 27 December 1919), even

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though their campaign relied on photos of bad vaccine results and the use of children with sore arms to arouse public anger at their rallies and meetings.16 Hastings’ claim that the state had a duty to protect children’s health reflected the public health officials’ concern that the 1906 decision to rescind mandatory vaccination prior to school entrance had created a large number of potential smallpox victims. Even though the 1919 outbreak was a mild form of smallpox, Hastings and his PBH colleagues did not want to risk the health of the future generation since Canada needed its children as replacements for all of the war dead. Nonetheless, this argument directly challenged parents’ right to decide whether or not to vaccinate their children. The deaths of three children after vaccination in November were used as proof of the dangers even though post-mortem examinations indicated that one child died of blood poisoning, one of diphtheria, and one of infantile paralysis (polio).17 For the AVL, the Medical Officer’s claims of expertise and support for vaccination from international experts, scientific institutes, and organizations such as the Canadian and American Public Health and Medical Associations represented elite paternalism and a misunderstanding of democracy (“Voice of the People,” Toronto Star, 22 December 1919). Led by Drs. Henry Becker and J.B. Fraser, noted homeopaths, the AVL claimed to represent the 80 per cent of Torontonians who did not want their children vaccinated and charged that the regular medical profession used its political connections to obtain vaccination legislation (“Vaccination Called ‘Crime’ by Antis,” Toronto Star, 6 November 1919, and “Will Carry on Fight Against Vaccination,” Toronto Star, 11 November 1919). The extent and vehemence of the controversy finally prompted Toronto’s Academy of Medicine to issue a statement. On behalf of the mainstream medical profession, the president argued that uneducated, irresponsible individuals had been upsetting the public with their claims about the dangers of vaccination. The statement summarized the profession’s position that smallpox could become more virulent, that vaccination was the only preventive, and that vaccine lymph and the procedure both were conducted under conditions of strictest cleanliness (“Is Only Protection,” Toronto Star, 26 November 1919). As the continuing agitation indicated, it became clear that neither group was listening to its opponents’ arguments. The situation was compounded as Toronto found itself facing national and international censure. The American government closed the border to the unvaccinated, and even other Ontario towns and cities threatened legal action to recover the costs of caring for cases which they claimed were caused by Toronto’s inability to control the spread of the disease. In an ironic twist, Montreal required all passengers on trains that originated in Toronto to provide proof of vaccination (“Montreal Will Bar All from Ontario,” Toronto Star,

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16 December 1919). The PBH added to the tension by seeking a legal writ that would compel the city council to issue a proclamation requiring compulsory vaccination of adults. In the midst of the annual municipal election campaign, such strong pressure from the provincial experts prompted many candidates to oppose the measure as an infringement of the city’s right to govern itself.18 Combined with the work of the AVL, the end result was a stalemate as both sides waited for the epidemic to run its course. By the spring of 1920, Hastings was able to report that over 250,000 Torontonians had been vaccinated and that the disease was no longer a threat. What had this episode demonstrated? The arguments presented by pro- and anti-vaccinationists revealed the lessons learned from the 1885 outbreak, the gap between professional and lay understanding of the bacteriological discoveries of the 1880s and 1890s, and differences of class and culture. Driven by their belief in the efficacy and safety of carefully manufactured vaccine and antiseptic and aseptic administration protocols, Hastings and his supporters failed to recognize that their rhetoric would not sway individuals and groups who were influenced by personal stories of loss and pain, fear of the procedure, and the postwar rejection of authority that swept through the world in 1919. Many of the AVL members were returned veterans, fed up with authority figures and sceptical about the merits of vaccination based on their experiences. Others were homeopaths and chiropractors who were seeking to provide an alternative to mainstream medicine by using the controversy to highlight their therapeutic differences.19 For medical professionals, the 1919 outbreak led to further refinements of vaccination techniques and to growing support for health education rather than executive orders as the most effective method of persuading the public to accept and adopt immunization for disease prevention. It also laid the groundwork for a cultural shift in the acceptance of immunization for disease prevention. Education would indeed be the central method for attenuating racial and ethnic divisions when it came to preventing another scourge – diphtheria – through vaccination. The Science of Immunity, Public Health Policies, and the Fight against Diphtheria In 1910 Quebec was divided into ten health districts which were to be supervised by full-time resident district medical officers who had to have a diploma in public health (Pelletier 1940; 20e Rapport annuel du Conseil supérieur d’hygiène de la province de Québec 1914, 35–9). Ontario followed a similar approach in 1912. This development indicated the increasing professionalization of public health practice as the postgraduate courses which these men took

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prepared them for government service and created a distinct identity within the medical profession. Informed by bacteriology and new knowledge of the principles of immunity (Roy, chapter 4 in this volume; Silverstein 2001; Moulin 1991), early twentieth-century medical officers in both provinces were staunch supporters of vaccination and medical research. Dr. J.G. FitzGerald was appointed as an associate professor of hygiene at the University of Toronto after completing postgraduate training in bacteriology at the Pasteur Institutes in Paris and Brussels and at the University of Freiburg. Drawing on this background, he was determined to bring medical advances to the public through the creation of a research laboratory in Canada that would provide low-cost antitoxin for treatment and prevention of diphtheria, which was a constant threat to children. The Antitoxin Laboratory of the Department of Hygiene opened in May 1914 (Bator and Rhodes 1990). During the First World War, the new laboratory quickly began to supply typhoid and paratyphoid vaccines, various sera and, after taking over the Palmerston Vaccine Farm in 1916, smallpox vaccine for the Armed Forces (Defries 1968). That same year, the Ontario PBH persuaded the government to pay for free distribution of diphtheria antitoxin. As the war ended, the success in controlling infectious diseases through preventive immunization was clearly demonstrated by the statistics that showed many fewer casualties from communicable diseases than in previous conflicts. At the beginning of the 1920s, public health experts agreed that rebuilding the Canadian population was a central policy goal (Baillargeon 2004; Comacchio 1993). Controlling childhood diseases like diphtheria became even more important than in the past because provincial statistics confirmed high rates of mortality from the disease: in 1918 the 23 per cent mortality rate resulted in 1,943 diphtheria deaths in Quebec (24e Rapport annuel du Conseil supérieur d’hygiène de la province de Québec 1918, 23). Why was Ontario also experienc­ ing a similar trend? With the development of appropriate tools, experts had expected the disease to decline rapidly (Bator and Rhodes 1990; Schaeffer 1985).20 In medical and public health journals, concerned officials debated the possible causes of high rates of mortality from the disease. Were parents and guardians not aware of immunization?21 Were doctors unable to diagnose the disease? Or were they not called to see the patient until too late? Starting in the mid-1890s, doctors in Toronto and Montreal had been able to have throat swabs tested for diphtheria, and Toronto’s Isolation Hospital provided antitoxin treatment when children were admitted. The city health department organized a series of culture stations in drugstores so that doctors could collect specimen kits, do the test, and send it to the city laboratory for analysis. But as their Quebec colleagues also discovered, the time lag required for diagnosis often meant that the antitoxin was administered too late (Braithwaite, Keating, and Viger

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1996). As FitzGerald and others knew, cost was a factor. The antitoxin treatment was very expensive and would continue to be so until authorities paid for its costs of production and public facilities provided free immunization. Although Ontario and several other provinces began to purchase their supplies and provide them gratis to practitioners during the First World War, it was not until 1928 that Quebec opened free immunization clinics in all county health units (Lessard 1934, 517). In both provinces, though, parents still had to pay if the immunization was provided by the family doctor, so accessibility, in terms of affordability, remained an issue. But did parents need to be convinced that the disease could be prevented rather than cured? Since the 1870s, various popular health journals such as The Sanitary Journal and Journal d’hygiène populaire had attempted to educate the public about the causes of various diseases and the most effective ways of preventing them. Activist health officers had used local newspapers for educational purposes and provided circulars to physicians but with limited impact. At the beginning of the twentieth century, therefore, public health experts in Canada and the United States turned to modern advertising for tips on spreading the preventive message (Tomes 1998; Burnham 1987). The campaign to eradicate diphtheria thus rested as much on health education as on the application of medical research.

Reaching the Public: Health Education for Women and Children Women and children were identified as the primary targets for health education because of their socially defined roles as present and future caregivers. In the first Rapport Annuel du service provincial d’hygiène de la province de Québec for 1922–3 (1923), General-Inspector E-M.A Savard reported that, in the past year, 1,832 public presentations on hygiene [were given] … 104 papers dealing with public health were published, 67,205 pamphlets distributed. In October 1922, the Health Board had also organised a ‘hygiene week’ in every single municipality of the province. On this occasion a brochure entitled Pour qu’on aime l’hygiène that included a series of health tips was distributed among schoolteachers who relayed the information to their students (and in every church of the province). (54)

During this health education week, health inspectors also gave numerous talks “supported by movies.” Similar reports about the educational impact of Health Weeks appeared in Ontario government publications. In addition, educational columns such as “For Your Health,” written by Canadian and American m ­ edical

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experts, began to appear in the daily press and women’s magazines. At a time when the school population was increasing and attendance was mandatory until the age of fourteen, children in Ontario were taught about health habits, disease prevention, and accidents and emergencies through the Ontario Public School Health Book. First published in 1925, the section on disease prevention explained how diphtheria was caused and could be prevented through antitoxininduced immunity. As the authors observed: “If everyone were protected in this way (antitoxin), diphtheria might disappear altogether, just as smallpox might disappear if everyone were vaccinated” (Fraser and Porter 1925, 163–4). But problems with reactions to the toxin-antitoxin immunization had prompted further research and, in 1923, Gaston Ramon, a chemist at the Pasteur Institute in Paris, used formalin to neutralize the toxin. By May 1926, FitzGerald (who had visited the French Institute in 1924) was able to announce to the Canadian Health Congress that Connaught Laboratories had produced the toxoid which he declared superior because it was non-toxic, was free of horse serum, and created immunity faster than the existing preventive (“Scourge of Smallpox Risked by Neglect,” Toronto Star, 6 May 1926). Field trials in Hamilton and Brantford confirmed the toxoid’s effectiveness and, by October, the Toronto Star headline read “Stamp Out Dread Disease Hope of Health Department if the Public Co-Operate” (7 October 1926). To obtain public support, MOH Hastings rejected a suggestion by the chairman of the local board of health that coercion of schoolchildren should be done to ensure mass coverage. Instead, educational material was sent to city doctors and to parents through the schools. Arguing that not to prevent a preventable death from diphtheria constituted a crime and that only two painless toxoid shots were needed, Hastings told a Toronto Star reporter that if all children over six months and under ten received the toxoid that diphtheria could be eliminated by 1928. He also stated that the department did not introduce preventive measures until they were well-established and, in so doing, rebutted criticisms from an American doctor that a former anti-vaccination leader had sent to the Toronto Star (“Urges Real Campaign against Diphtheria,” 12 November 1926). Toronto’s initial campaign introduced the idea of toxoid but opposition from city doctors to school inoculations and the use of well-baby clinics for testing and immunization led to incomplete coverage. By 1929, Hastings’ successor, Dr. Gordon Jackson, realized that diphtheria rates were increasing. He asked Dr. Gordon Bates, the executive director of the Canadian Social Hygiene Council, for assistance. Educating the public to take responsibility for immunizing their children against diphtheria became a key component of the Health League of Canada’s22 activities, beginning in 1933 when its magazine Health started publishing until the early 1980s when the magazine folded. As a non-governmental organization with experience in

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organizing mass meetings, conducting health education campaigns, and acting as a bridge between official health agencies and the public and practitioners, the Health League was a crucial contributor to the elimination of diphtheria in Canada.23 During the 1920s, Ontario and Quebec had restructured their provincial boards into provincial health departments. In 1926, Quebec began to create health units (unités sanitaires de comtés) in order, among other things, to provide rural Quebec with an efficient public health system (Desrosiers et al. 2001; Goulet, Lemire, and Gauvreau 1996). Their inspectors also enforced the law that required every child be vaccinated against smallpox upon entering school. The units were the springboard for its successful diphtheria immunization campaign from 1927 to 1928, according to Alphonse Lessard, then director of Quebec’s PBH. Using toxoid from Connaught Laboratories and the local Institut vaccinogène de Sillery, the district staff vaccinated 143,719 of 221,844 eligible children free of charge in 1931–2.24 The five cities on Montreal Island also conducted effective campaigns, but as the author noted: “The work must go on incessantly; there always will remain the immunization of babies to be done” (Foley 1933, 169). From 1928 onward in Montreal, sixty-eight gouttes de lait (milk depots) provided both private and publicly funded medical consultations to mothers and their babies to “educate” the first and immunize the second against smallpox and diphtheria (Baillargeon 2004).25 In the 1930s, the Metropolitan Life Insurance Company also advertised and promoted a pamphlet on “diphtheria and your kids” in French in the popular women’s magazine La Revue moderne, promising to provide vaccination free of charge to anyone who made the request (La Revue moderne, October 1933, 13). Budget cuts to provincial health spending in the mid-1930s ended the first diphtheria immunization program, and it was not until the Health League created a Quebec branch in 1940 that there could once again be sustained publicity efforts (Health Winter 1940–1). In 1940, Dr. J.A. Baudoin, professor of hygiene at Université de Montréal and a specialist in the BCG (Bacille Calmette-­Guérin) vaccine, wrote an article entitled, “A la conquête de la diphtérie” (“The Conquest of Diphtheria”) (L’UMC 1940). In it, he said: This new immunization technique [anatoxin] … spread all over the world rather quickly. Here, in Quebec, diphtheria is already on the verge of being eliminated thanks to our well-informed colleagues, thanks to the visiting nurses who educated the general population about its benefits, thanks to the health units, to the municipal health services, and also to numerous private health organizations. Now we just need to immunize every single preschool child. (68)

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Doing so required public support, so the Health League’s Montreal branch adapted the approach that had worked so well for Toronto and its citizens.

Campaigning for Health: Local and National Immunization Weeks Dr. Gordon Bates had always argued that parents “must not be stampeded into inoculating their children; rather the slow and democratic process of education must be employed” (Katz 1941, 17). Starting in 1929 with 1,022 cases and 44 deaths, the Toronto campaign led to a world first for a city with a population over 500,000: no cases and no deaths in 1940. How was this achieved? A volunteer committee, chaired by a leading advertising executive, created Toxoid Week banners, posters, and educational materials that appeared in newspapers, doctors’ offices, and handouts taken home from school along with blank forms for immunization approval. This combination of modern advertising techniques and an annual focus on the importance of immunization normalized the procedure and made it a routine part of child health work for parents and practitioners because immunization was becoming socially acceptable and “culturally accessible” (Monnais 2016). In Montreal, doctors trained in “how to proceed with the anatoxin” and how to reassure parents, thanks to tips that were published in local medical journals, gave public talks. In contrast to the divisions in the 1880s, clergy of all denominations preached sermons favouring the procedure on Immunization Sunday. While spot announcements and radio plays spread the message across the airwaves. In both cities, public health nurses visited new mothers when their babies were six months old and encouraged them to get the child immunized. Parents told their friends about the procedure “when they saw how harmless and painless” it was. As one article declared, the campaign “has shown how the modern metropolis can rid itself of a deadly, controllable disease by uniting the populace to fight it” (Health 1941, 17). In 1940, only 118 deaths (3.6 per 100,000) were attributed to diphtheria in Quebec, compared to 2,243 in 1895 (150.3 per 100,000) (Foley 1942, 199). But some people were still reluctant when it came to systematically immunizing their children. “Are they waiting for an outbreak to do so?” lamented Dr. Albert Lesage in 1942 (L’UMC 1942, 553–5). This theme was to re-emerge in the late 1940s and early 1950s as the incidence of the disease declined and fewer parents and practitioners could report having seen a case. But doctors were now speaking with one voice about the benefits of vaccination. To encourage the public in deciding to support immunization, in July 1941 and September 1942, Health published articles which illustrated how parents were persuaded to change their minds and demand the procedures, such as the Great War veteran who remembered the pain of his own experience and was

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determined to protect his children from the disease. Likewise, the success of the Toronto and Montreal campaigns in 1941 led the provincial medical officers to agree that a national toxoid week would be beneficial. In his editorial endorsing national immunization week in the spring of 1942, Bates pointed out that between 1938 and 1941, Canada had 8,071 cases and 850 deaths from diphtheria. To ensure that the message got to parents, the Governor-General was going to speak on nationwide radio, the federal minister of health was going to appear onscreen in a newsreel, and the prime minister was to send an official letter of support for publication in the magazine. With a circulation of 10,000 copies in the early 1940s, Health magazine provided Canadians with easily understood but scientifically accurate explanations of the disease and its prevention. Quebec’s minister of health and social welfare, Albiny Paquette, for example, contributed an article on diphtheria control in his province. Noting that parents had a duty to protect their children, he concluded that the war against diphtheria “is going well with the incidence and death rate declining under the pressure of educational and immunization campaigns” (Health Winter 1944–5, 12). By the third year of the Second World War, Canadians were focused on defeating disease as part of their patriotic duty – a marked contrast to the opposition to vaccination that had existed in 1885. Throughout the 1930s, 1940s, 1950s, and later, Canadian women remained the main target of medical advice and public health education (Baillargeon 2004). They were reminded of their role as the mothers of the future generation. Using the benefits of modern science to protect their babies and other children was a national as well as an individual responsibility. With the end of the Second World War, the rhetoric intensified. In her article “Why a National Immunization Week?” Mabel Ferris, the long-serving secretary to the Health League and its Immunization Committee, opened by reminding readers that “reconstruction requires healthy children as they are the citizens of the future.” Diphtheria, scarlet fever and whooping cough were all now preventable through immunization but many parents “fail to protect their children – even though they know that immunization is of vital importance.” For the first time, she included a list of immunizations and the preferred time of administration. According to her chart, diphtheria toxoid was to be given between six and nine months (Health Summer 1945, 5). Published as the baby boom generation was being born, such an article, when allied with newspaper columns and childcare books written by experts like Dr. Benjamin Spock, had a profound impact on a new generation of mothers. By the end of the 1940s, Health’s readership had increased to 22,000 and National Immunization Weeks had become an expected part of the educational work of health departments across the country.

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Clearly health education (and a long process of popular persuasion) had become a substitute for coercion in the interwar period. According to Jane Lewis (1986), the very active approach to diphtheria adopted in Canada was due to several factors: first, the supply of cheap, good quality prophylactic from the Connaught Laboratory; second, the leading role played by provincial health boards; and third, the greater commitment of Canadian doctors to immunization. The vaccines, including the anatoxin/toxoid, had also become more accessible to the general population, being more financially affordable. Vaccination was now accepted by the general population both as an efficient technique and as an important preventive measure. In Quebec, La Revue moderne published an article by Dr. Jacques Tremblay outlining the benefits regional medical clinics would promote in eliminating vaccine-preventable disease like diphtheria through mass immunization (La Revue moderne, March 1942, 8). For the women reading this magazine, childhood diseases were now preventable through the application of modern medicine. From the late 1940s, mothers could access baby clinics within the unités sanitaires de comté that provided them with free vaccines, including diphtheria, tetanus, and whooping cough. In Toronto, the city’s twenty-five baby clinics provided the toxoid and later the DPT (diphtheria, pertussis, and tetanus) vaccine free to children from six months to school-aged. Older children could receive the booster shots required to maintain immunity through school immunization programs. For those who preferred to receive their immunization from their family doctors, that option was also open as the province continued to supply practitioners throughout Ontario with free vaccine.26 What had happened to the AVL in this context? After the 1919 controversy in Toronto, the AVL shifted focus and became the Medical Liberty and AntiVaccination League in order to support the claims of osteopaths, chiropractors, and homeopaths for professional recognition. Since smallpox gradually died out, except for brief and quickly controlled outbreaks, vaccination opponents shifted their attention to medical failures such as the BCG tragedy in Lübeck, Austria; the diphtheria antitoxin deaths in Bundaberg, Australia; and the occasional tetanus case after vaccination in the United States (Willrich 2011; Arnup 1992). While these events provided material for critiquing immunization, the cultural context had shifted and the growing public expectation that science would find either “magic bullets” or vaccines to prevent disease meant that opponents found fewer and fewer supporters. And with age, the AVL’s leaders died. As a result, like our American colleagues, James Colgrove (2005) and Robert Johnston (2004), we could find little active opposition to diphtheria immunization after this period.

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Conclusions This history of anti-vaccination action and rhetoric in Ontario and Quebec illustrates the importance of time, place, religion, and culture in the social response to disease. In the nineteenth century, doctors and the public in both provinces derived their understanding of smallpox and vaccination from personal experience, social representations, religious beliefs, and international agents such as the British, American, and French anti-vaccination movements. Lacking a sophisticated understanding of either immunology or the germ theory until the 1890s, practitioners were seeking clarification from health authorities about the quality of the lymph that they were receiving and guidance on how best to administer it. They also worried about competition from municipal or provincial vaccinators since maintaining their patient base and thus their incomes was difficult, given the number of alternative health providers available. Without a firm foundation of statistical evidence to support the pro-vaccination perspective, many complied grudgingly with vaccination legislation while also supporting their patients’ decisions to resist the procedure. Clearly several different expert cultures were competing at the time when it came to vaccination, infectious disease, and public health measures. The public had even more pressing concerns in the late nineteenth century. If differences between French and English cultures influenced local responses to vaccination in 1885, other sociocultural factors were also evident. Vaccinations cost money and poor workers were unable to pay the fees to cover immunization of themselves and all the members of their families. Since they did not usually have family doctors, they turned to charitable clinics for care and treatment. If the authorities in Montreal had tried to use such facilities, the violence that erupted in 1885 might not have occurred, according to Keelan (2004).27 In addition to cost, fear of being laid up with an injection site infection also contributed to opposition. Until the quality of the vaccine lymph and the procedure improved, there was little incentive for workers to voluntarily undergo vaccination. And as we demonstrated, attempts to coerce adults and children into accepting vaccination resulted in active and passive opposition. Parents in Montreal brandished weapons against sanitary inspectors seeking to remove their children to the Smallpox Hospital. Roving bands of protesters rioted against the Public Health Board’s edicts, pelted its central and district offices with rocks, and physically attacked its vaccinators (Williams 2011; Bliss 1991). In Ontario other forms of opposition occurred. Possible contacts simply disappeared. Others broke quarantine to go to work because they did not have the funds to stay home. The anti-vaccination posters, pamphlets, and articles all highlighted the deaths and disease that followed the procedure. They also

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emphasized the loss of personal liberty regarding decisions about one’s own and one’s children’s bodies. This latter concern is still with us today and goes to the heart of the conflict, as several chapters in this volume highlight (see, in this volume, chapter 2 by O’Doherty, Smith, and McMurtry; chapter 3 by Brunk; and chapter 6 by Guay, Dubé, and Laberge). Who has the right to determine the appropriateness of vaccination? Is it the individual whose body is being used to serve the state? Or is it the state which must focus on community health? This conundrum is clearly manifested by our historical case study. Initially, public health officials were so strongly convinced of the effectiveness of vaccination that they attempted to copy British legislation, which made the procedure compulsory. During epidemics, compulsion had some public support but astute medical officers quickly learned that persuasion was a more effective approach. The 1919 episode in Toronto demonstrated that compulsion as a legal tool could fail in the face of political and public opposition. Thus, public education became the preferred option, mostly provided by non-­ governmental groups. In Canada, at the time, most provincial health departments were just being created and there was resistance to authority after four years of central direction during the First World War. Health officials worked with medical researchers to refine vaccines and develop immunization protocols that would eliminate the fear and loathing of the past. Through the creation of the Connaught Laboratories, the University of Toronto School of Hygiene, the Institut de microbiologie et d’hygiène de Montréal (future Institut Frappier), and the various public health diploma programs, Canadians had expert health officers and research scientists who could take developments like BCG and the diphtheria toxoid and adapt them to Canadian needs. Building on the moral foundation that the sanitarians had established during their crusades for environmental health and adequate vital statistics, the second generation of public health professionals transmuted their service ethic into devotion to the application of science for the betterment of society in the context of new social norms. However, this did not resolve the fundamental issue of trust or ensure effective communication, a historical fact that is echoed in what Bramadat in chapter 1 calls the “crisis of trust” that creates obstacles to present-day vaccination campaigns. As experts, public health researchers, educators, and bureaucrats understood the science behind the policies and programs that they developed. Believing that reason rather than emotion fuelled decision-making, they couched their support for vaccination and immunization in terms of economic and social benefit. But did arguments about the amount of money that governments saved by preventing disease and its costly curative services resonate with the public? Also, one needs to ask how exactly could officials prove that their work had prevented disease if

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citizens did not fully understand the principles of immunology and the role of antibodies in protecting their health? The Health League and its magazine represented efforts to bridge the gap between the public and the experts. Many of the articles about the benefits of immunization were written by leading Canadian researchers using language that clearly outlined the history of the vaccine, the signs and symptoms of the disease, the long-term and short-term health threats that it posed, and the role of immunization in controlling or preventing it. By the 1950s, these articles were explaining the number of shots required and the side effects that could be expected. Interestingly, the radio plays and dramatizations used emotion to convince parents of the value of immunization – a strategy supporters had learned from their anti-vaccination opponents. By 1961, Dr. Gordon Bates was able to report that Canada had not had a case of smallpox since 1946, but that there had been fifty-three cases and seven deaths from diphtheria in 1960. In contrast to the statistics that had been used to generate public support when National Immunization Week started in 1943, these results demonstrated that two scourges had been practically eliminated. But success led to questions about the relevance of the national campaign. Was the effort worth the time and cost since most citizens had accepted the necessity of routine immunization for their infants and schoolchildren? Bates responded by arguing, “If knowledge is power, ignorance is weakness! National Immunization Week is calculated to provide a means whereby we may present a united front in our attack on these preventable diseases” (Health August 1961, 10). In 1962, York Township’s MOH Dr. W.E. McBean described the role of safe, simple, and effective vaccines in family health and concluded by identifying the fundamental challenge: “Canada’s National Immunization Week is an opportunity for each of us to consider whether we have taken our share in protecting our children, ourselves, our neighbours and our community” (Health August 1962, 40). That challenge has been and remains central to immunization acceptance and resistance. As this chapter has demonstrated, historical analysis of the roots of long-standing issues provides context and depth. Without an appreciation of the many changing realities that influence individual and collective decision-making, policymakers will continue to focus on short-term solutions. As Simon Szreter (2009) has argued: “History provides a way of thinking about society and its component parts, about the messy, conflicted and negotiated process of change and about the difference between perspectives of different agents, a disposition which potentially can assist in the field of policy formulation and implementation” (240). As this collection examines the many cultural and religious factors that contribute to vaccine resistance in the twenty-first century, understanding the use and misuse of history by vaccine supporters and resisters will continue to be a vital aspect of current and future policy initiatives.

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NOTES 1 For a general overview on the history of vaccination and vaccination hesitancy from the eighteenth century onward, see Roy’s chapter 4 in this volume. 2 Throughout the nineteenth century, vital statistics were collected sporadically by churches and cities and, starting in 1841, through decennial censuses. Many hygienists demanded more accurate morbidity and mortality statistics, and after sustained pressure, John A. Macdonald’s government passed legislation providing federal funding for cities over ten thousand that appointed medical health officers whose duties included collecting and reporting disease and death statistics to the Department of Agriculture. This conditional grant lasted from 1882 until 1893, but it was not until the Dominion Bureau of Statistics was established that national vital statistics were collected, beginning in 1926. 3 Letters, editorials, and articles from several medical and public health periodicals including Journal d’hygiène populaire, L’Union médicale du Canada [L’UMC], The Sanitary Journal, and Health are cited in the text with the journal title, issue date, and page number. We have followed the same citation system for annual reports from the Association of Executive Health Officers of Ontario and the Québec Conseil d’hygiène. It is important to mention here that historians of medicine and health deal with many different sources of information. Medical and public health periodicals are one type, and they often require the identification and the analysis of hundreds of articles over a long period of time. For this chapter, both authors have also worked extensively with newspapers and magazines such as the Toronto Star, The Globe (the Globe and Mail from 1936 on), and La Revue moderne (in order to better understand the information about vaccination the general population had access to), anti-vaccination publications, and documentation from provincial public health authorities, including boards of health reports. All translations from sources in French are by the authors. 4 The principles of antisepsis had only become known in the scientific community in the mid-1860s and were not fully adopted until the 1890s. 5 In this case, the rural physician was offering to send LaRoque dried vaccine that was placed on ivory “points” for storage and transport. Glass capillary tubes were not in widespread use until the end of the nineteenth century. The Beaugency strain originated in France and was used in Canada and the United States as the basis for local vaccine supplies. 6 The word “sanitarian” was used in Britain and the United States as well as Canada to describe the doctors, engineers, architects, and concerned citizens who believed that environmental pollution was a source of disease that could be eliminated through adopting the benefits of science and technology. These groups led campaigns for pure water and effective waste disposal and represented the first phase of the public health movement. 7 It is impossible to determine the cause of death due to a lack of information.

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8 During the nineteenth century, the term “race” was used to denote specific ethnic and cultural groups who did not share the values of the dominant white, AngloSaxon, Protestant society. 9 On the anxieties related to the animal origin of the vaccine, see also Roy’s chapter 4 in this volume. 10 The Institut, founded by Dr. Edmond Gaudreau, professor of hygiene at Laval’s medical and veterinary schools, would not be under the supervision of the board until 1894; it initially came under the Ministry of Agriculture (Pierre-Deschênes 1981). 11 Current anti-immunization websites often include heartbreaking pictures of children whose parents claim that they were damaged by immunization. This demonstrates the emotional foundation for much opposition, and clearly, in our visually oriented world, is likely to influence vaccine-hesitant parents. On the incidence of this kind of information and its impact on parents, see Boucher, chapter 11, in this volume. 12 For unknown reasons, smallpox virulence declined by the early twentieth century with the result that many cases were initially misdiagnosed as chickenpox. Vaccination supporters argued that the relative mildness was due to the extent of vaccination while opponents claimed that this demonstrated that vaccination was not an effective means of preventing outbreaks. 13 See Toronto Star articles: “The Board of Health Is For Vaccination,” 3 November 1919; “Request of M.O.H. Arouses Aldermen,” 4 November 1919; “Smallpox Cases Are Increasing, Now 41 in The City,” and “Professor J.J. Mackenzie Urges Vaccination,” 5 November 1919; “The ‘Shut Your Eyes’ Deputation,” 7 November 1919; “Cases Reported 191, Smallpox in The City,” 10 November 1919; “Seven Doctors Work on Vaccination Line,” and “Fifty-Eight New Cases of Smallpox This AM,” 11 November 1919; “Cases Number 269, Still on Increase,” 12 November 1919; and “Health Officer Gives Case For Vaccination,” 13 November 1919. 14 On the two opposing sides, see “Vaccination Called ‘Crime’ By The Antis,” Toronto Star, 6 November 1919; “Seven Doctors Work on Vaccination Line,” Toronto Star, 11 November 1919; and “Health Officer Gives Case For Vaccination,” Toronto Star, 13 November 1919. On the AVL’s claim that the epidemic was manufactured, see “Anti-Vaccinationist Clash With Loan Meet,” Toronto Star, 11 November 1919; and “Voice of the People,” Toronto Star, 13 November 1919. 15 The Health Bulletin was a monthly four-page document which Hastings and his staff created to inform interested citizens about the work of the department. It contained stories about the latest scientific discoveries in disease control and prevention, a list of child health centres and tuberculosis clinics, and information about the quality of the city’s milk and water supplies. This publication existed from 1911 to the mid-1920s. A copy of the Bulletin is available in the Metropolitan Toronto Archives.

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16 See Toronto Star articles: “Will Carry on Fight against Vaccination,” “Strong Opposition to Vaccination By B.I.A.,” and “Writes To City Hall Against Compulsion,” 11 November 1919; “Lives News of Greater Toronto – Earlscourt – They’re Up In Arms,” 15 November 1919; “Meeting Denounces Forced Vaccination,” 17 November 1919; “Earlscourt Opposed to Vaccination Order,” 18 November 1919; “Publicity Campaign on the By-Law Votes Criticism of Vaccination,” 25 November 1919. 17 See Toronto Star articles: Alfred George, “Blames Vaccination as Cause of Death,” 24 November 1919; Muriel Taylor, “Holds Vaccinations to Blame for Death,” 24 November 1919; “Father of Dead Boy Will Start Lawsuit,” 26 November 1919; “Mother Says Vaccine, but Doctor Says No,” 28 November 1919; and “Admit Vaccination Lowered Vitality,” 2 December 1919. 18 See Toronto Star articles: “City Council Almost Evenly Divided On Vaccination,” 9 December 1919; “Danforth Ratepayers Are Red Hot ‘Antis’” and “Vaccination Order Arouses Opposition,” 10 December 1919; “Voice of the People,” 11 December 1919; “City Council Ignores Prov. Bd of Health,” 17 December 1919; “Voice of the People,” 20 December 1919; “Voice of the People,” 22 December 1919; “Epidemic Is Abating, Only 27 Cases, 24 HRS,” “To Get a Mandamus, If Board Has Right,” and “Voice of the People,” 24 December 1919. 19 This willingness to highlight a “therapeutic distinction” is still shared among several groups of alternative practitioners (see Dubé et al., chapter 7 in this volume). 20 As European researchers discovered the diphtheria bacillus and established that it was the toxin it produced that killed, doctors everywhere hoped for either a cure or a means of preventing the disease. In 1894 Pastorian Emile Roux announced the antitoxin treatment, and the following year, it was being used in Canada and the United States. The high cost of the treatment and the reaction of some recipients led to the development of the Schick test. An epidemic in 1916 led William Park of the New York City Laboratory, one of the major sources of antitoxin, to do a mass immunization program in 1916. Following reports of its success, other large North American cities contemplated similar preventive measures. 21 As Plotkin and Plotkin (2004) indicate, researchers and public health officials began to use the term immunization in the early 1920s specifically to describe the use of antitoxin and then toxoid to prevent diphtheria. Canadian experts quickly adopted this rhetoric, but the public appears to have regarded the term as synonymous with vaccination. 22 The Canadian Social Hygiene Council changed its name to the Health League of Canada in 1935 to reflect its broadened mandate. 23 During the interwar years, other NGOs such as the Rockefeller Foundation pursued health crusades based on education of specific populations, designed to eradicate diseases such as tuberculosis, pellagra, and hookworm all over the world,

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Heather MacDougall and Laurence Monnais including in Canada, while funding research into vaccine preventable diseases (Farley 2003). The Institut de microbiologie et d’hygiène de Montréal was created in 1938 with public support from the Duplessis government, as the Quebec equivalent (and competitor to) of Connaught Laboratories (Malissard 2000). Its main research focus was the BCG vaccine, although it began producing local diphtheria toxoid for Quebec in 1942. Diphtheria was also controlled by improving milk quality through pasteurization which reduced bacterial contamination and especially Corynebacterium diphtheriae, the causative agent of diphtheria. See “Allergy Is Blamed in Death of Infant,” Toronto Star, 24 July 1943; “National Immunization Week,” Toronto Star, 18 November 1943; “Annual Toxoid Week Will Start April 7,” Toronto Star, 26 March 1946, “32 Child Health Centre Wage War on Disease,” Globe and Mail, 26 April 1951; and “Red Feather Service Asks all Children Immunized,” Toronto Star, 23 September 1954. According to Guay, Dubé, and Laberge, chapter 6 in this volume, accessibility is still an issue in vaccine uptake: for instance, families with financial difficulties might have problems attending a clinic or a doctor’s office because of lack of transportation or free time to do it. Furthermore, not all recommended vaccines are provided free of charge in all the Canadian provinces and territories.

REFERENCES Arnup, K. 1992. “Victims of Vaccination? Opposition to Compulsory Immunization in Ontario, 1900–90.” Canadian Bulletin for the History of Medicine / Bulletin canadien d’histoire de la médecine 9: 159–76. Baillargeon, D. 2004. Un Québec en mal d’enfants. La médicalisation de la maternité, 1910–1970. Montreal: Les Editions du Remue-Ménage. Bator, P.A. 1983. “The Health Reformers versus the Common Canadian: The Controversy over Compulsory Vaccination against Smallpox in Toronto and Ontario, 1900–1920.” Ontario History 75 (4): 348–73. Bator, P.A., with A.J. Rhodes. 1990. Within Reach of Everyone: A History of the University of Toronto School of Hygiene and the Connaught Laboratories, Volume 1, 1927–1955. Ottawa: Canadian Public Health Association. Biss, E. 2014. On Immunity: An Inoculation. Minneapolis: Graywolf Press. Bliss, M. 1991. Plague: A Story of Smallpox in Montreal. Toronto: Harper Collins. Braithwaite, C., P. Keating, and S. Viger. 1996. “The Problem of Diphtheria in the Province of Quebec: 1894–1909.” Histoire Sociale / Social History 29 (57): 71–95.

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Burnham, J.C. 1987. How Superstition Won and Science Lost: Popularizing Science and Health in the United States. New Brunswick, NJ: Rutgers University Press. Canadian Public Health Association. 2010. This Is Public Health: A Canadian History. Accessed 12 May 2014, www.cpha.ca/en/programs/history/book.aspx. Colgrove, J. 2005. “Science in a Democracy: The Contested Status of Vaccination in the Progressive Era and the 1920s.” Isis 96 (2): 167–91. http://dx.doi. org/10.1086/431531. Comacchio, C.R. 1993. Nations Are Built of Babies: Saving Ontario’s Mothers and Children, 1900–1940. Montreal: McGill-Queen’s University Press. Conis, E. 2014. Vaccine Nation. America’s Changing Relationship with Immunization. Chicago: Chicago University Press. Craig, B.L. 1983. “State Medicine in Transition: Battling Smallpox in Ontario, 1882– 1885.” Ontario History 75 (4): 319–47. Defries, R.D. 1968. The First Forty Years 1914–1955: Connaught Medical Research Laboratories, University of Toronto. Toronto: University of Toronto Press. Desrosiers, G., B. Gaumer, F. Hudon, and O. Keel. 2001. “Le renforcement des interventions gouvernementales dans le domaine de la santé entre 1922 et 1936: le Service provincial d’hygiène de la province de Québec.” Canadian Bulletin for the History of Medicine/ Bulletin canadien d’histoire de la médecine 18: 205–40. Durbach, N. 2005. Bodily Matters: The Anti-Vaccination Movement in England, 1853–1907. Durham, NC: Duke University Press. Farley, J. 2003. To Cast Out Disease: A History of the International Health Division of the Rockefeller Foundation, 1913–51. Oxford: Oxford University Press. Farley, M., P. Keating, and O. Keel. 1987. “La vaccination à Montréal dans la seconde moitié du 19e siècle: pratiques, obstacles et résistances.” In Sciences et médecine au Québec. Perspectives sociohistoriques, edited by M. Fournier, Y. Gingras, and O. Keel, 101–52. Quebec: Institut québécois de recherche sur la culture. Foley, A.R. 1933. “Diphtheria Immunization in Quebec.” Canadian Journal of Public Health 24: 162–9. – 1942. “Half a Century of Diphtheria Prevalence in Quebec.” Canadian Journal of Public Health 3: 198–204. Fraser, D.T., and D. Porter. 1925. The Ontario Public School Health Book. Toronto: Copp Clark. Goulet, D., G. Lemire, and M. Gauvreau. 1996. “Des bureaux d’hygiène municipaux aux unités sanitaires. Le Conseil d’hygiène de la province de Québec et la structuration d’un système de santé publique, 1886–1926.” Revue d’histoire de l’Amérique française 49 (4): 491–520. http://dx.doi.org/10.7202/305462ar. Groulx, A. 1940. “Elimination of Smallpox in Montreal by Vaccination.” The Medical Officer, 13 July: 13–14.

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Guérard, F. 1996. “L’hygiène publique au Québec de 1887 à 1939: centralisation, normalisation et médicalisation.” Recherches sociographiques 37 (2): 203–22. http:// dx.doi.org/10.7202/057034ar. Johnston, R.D. 2004. “Contemporary Anti-Vaccination Movements in Historical Perspective.” In The Politics of Healing: Histories of Alternative Medicine in TwentiethCentury North America, edited by R.D. Johnston, 259–86. New York: Routledge. Katz, Sidney M. 1941. “A City Without Diphtheria.” Health 8: 17. Keelan, J. 2004. “The Canadian Anti-Vaccination Leagues, 1872–92.” PhD diss., University of Toronto. – 2006. “Biopolitics and the Body Public: Anti-Vaccinationism in Canada from a Historical Perspective.” In Comparative Program on Health and Society Lupina Foundation Working Papers Series 2004–2005, edited by J.C. Cohen and J.E. Keelan, 92–98. Toronto: Comparative Program on Health and Society, University of Toronto. January. http://webapp.mcis.utoronto.ca/resources/MCIS_Working_ Papers/January_2006_CPHS_working_paper.pdf#page=92. Kitta, A. 2012. Vaccinations and Public Concern in History: Legend, Rumor, and Risk Perception. New York: Routledge. Largent, M.A. 2012. Vaccine: The Debate in Modern America. Baltimore: Johns Hopkins University Press. Lessard, A. 1934. “Development of Public Health Administration in the Province of Quebec.” American Journal of Public Health 24 (5): 515–18. http://dx.doi. org/10.2105/AJPH.24.5.515. Lewis, J. 1986. “The Prevention of Diphtheria in Canada and Britain 1914–45.” Journal of Social History 20 (1): 163–76. http://dx.doi.org/10.1353/jsh/20.1.163. – dir. 2010. Outbreak: Anatomy of a Plague. Montreal: National Film Board of Canada. MacDougall, H. 1981. “The Limitations of Public Health Activity in Toronto’s Municipal Politics, 1883–1890.” Bulletin of the History of Medicine 55: 186–202. – 2007. “Toronto’s Health Department in Action: Influenza in 1918 and SARS in 2003.” Journal of the History of Medicine and Allied Sciences 62 (1): 56–89. http:// dx.doi.org/10.1093/jhmas/jrl042. Malissard, P. 2000. “Les ‘Start-Up’ de jadis: la production de vaccins au Canada.” Sociologie et sociétés 32 (1): 93–106. http://dx.doi.org/10.7202/001473ar. Monnais, L. 2016. Médecine(s) et santé. Une petite histoire globale, 19e-20e siècles. Montreal: Les Presses de l’Université de Montréal. Moulin, A.-M. 1991. Le dernier langage de la médecine: l’immunologie, de Pasteur au SIDA. Paris: Presses Universitaires de France. Pelletier, E. 1940. “Public Health in Quebec.” In The Development of Public Health in Canada, edited by R.D. Defries, 11–26. Toronto: Canadian Public Health Association.

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Pierre-Deschênes, C. 1981. “Santé publique et organisation de la profession médicale au Québec, 1870–1918.” Revue d’histoire de l’Amérique française 35 (3): 355–75. http://dx.doi.org/10.7202/303974ar. Plotkin, S.L., and S.A. Plotkin. 2004. “A Short History of Vaccination.” In Vaccines, edited by S.A. Plotkin, W.A. Orenstein, and P.A. Offit, 1–16. Philadelphia: W.B. Saunders. Ross, A.M. 1885. Stop!! A Pitiable Sight! People Driven like Dumb Animals to the Shambles!! Tyranny of Doctorcraft!! Montreal. Schaeffer, M. 1985. “William H. Park (1863–1939): His Laboratory and His Legacy.” American Journal of Public Health 75 (11): 1296–302. http://dx.doi.org/10.2105/ AJPH.75.11.1296. Silverstein, A.M. 2001. Paul Ehrlich’s Receptor Immunology: The Magnificent Obsession. San Diego: Academic Press. Spaulding, W.B. 1989. “The Ontario Vaccine Farm, 1885–1916.” Canadian Bulletin for the History of Medicine / Bulletin canadien d’histoire de la médecine 6: 45–56. Szreter, S. 2009. “History, Policy and the Social History of Medicine.” Social History of Medicine 22 (2): 235–44. http://dx.doi.org/10.1093/shm/hkp006. Tomes, N. 1998. The Gospel of Germs: Men, Women and the Microbe in American Life. Cambridge, MA: Harvard University Press. Williams, G. 2011. Angel of Death: The Story of Smallpox. London: Palgrave Macmillan. Willrich, M. 2011. Pox: An American History. New York: Penguin.

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BIOMEDICINE, THE STATE, AND VACCINE-HESITANT/ REJECTING COMMUNITIES

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6 A Portrait of Vaccine-Hesitant Canadians maryse guay , eve dubé , and caroline laberge

In this chapter we will describe the characteristics of Canadians who hesitate or refuse to be vaccinated1 at various stages of the vaccination process (i.e., infant, adolescent, and adult). We begin by describing Canadian parents who hesitate about infant, child, and adolescent vaccination, and also vaccinehesitant teenage girls, followed by adults who are hesitant about their own vaccination. Finally, we discuss some socio-demographic characteristics, and religious and cultural inclinations that are common among vaccine-hesitant groups. A few notes on methodology are in order before we begin. Literature that aims specifically to characterize the vaccine-hesitant individual is limited in Canada and elsewhere. The data presented here come from recent Canadian studies that analysed factors linked to non-vaccination or incomplete vaccination for free vaccines in public health programs. Studies on intent to vaccinate and travellers’ vaccination were not included. We focused on studies published from 2007 to 2014 because the notion of vaccine hesitancy has been explicitly present in scientific literature since roughly 2006 (Benin et al. 2006). Studies on vaccine hesitancy focus mainly on parents of young children and have relied on data from surveys, interviews, or focus groups. Since it is highly likely that vaccine-hesitant or -refusing individuals are less inclined to take part in vaccination research, these study findings could be biased.2 In addition, to describe vaccine-hesitant individuals, the data in the scientific literature focus on non-vaccinated or, less often, incompletely vaccinated subjects (those who fall behind or fail to complete the recommended immunization schedule). Yet as described throughout this book by Dubé, Sauvageau, and Gagnon (chapter 7), Bramadat (introduction), and MacDougall and Monnais (chapter 5), and by authors discussing vaccine hesitancy in countries other

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than Canada (Opel et al. 2011; Gust et al. 2008), vaccine-­hesitant people form a fairly heterogeneous group whose beliefs about vaccines exist on a continuum between acceptance and rejection (Benin et al. 2006; Gowda and Dempsey 2013; Larson et al. 2014). While there are limitations associated with all scientific studies, our interest in this chapter is to consider the broadest array of vaccine-hesitant individuals:3 those with uncertainties about vaccination, whose vaccination behaviour may include not receiving particular vaccines (e.g., vaccines for diseases perceived to be minor, such as chickenpox), but receiving others (e.g., vaccines for diseases perceived as more serious, such as tetanus); delaying vaccines; receiving vaccines without being sure they are doing the right thing; regretting their decision to vaccinate themselves or their children; refusing a vaccine in the future; or exercising influence on others not to be vaccinated. Vaccine-Hesitant Parents and Teenage Girls To characterize parents of young children who hesitate about or refuse vaccination in general, fourteen recent studies were identified (see Table 6.1): eight from Quebec (Boulianne et al. 2013; Boulianne et al. 2011; Boulianne et al. 2009; Boulianne et al. 2007; Dubé, Defay, and Kiely 2013; Guay et al. 2014; Guay et al. 2009; Hamid 2008), two from Ontario (Busse, Walji, and Wilson 2011; Guttmann et al. 2008), one from Saskatchewan (Avis et al. 2007), one from Nova Scotia (Dummer et al. 2012), one from Alberta (MacDonald, Schopflocher, and Vaudry 2014), and one that is pan-Canadian in its scope (EKOS Research Associates 2011). From the above studies, the following socio-demographic factors were more frequently associated with incomplete vaccination (defined as a child not having received one or more vaccines on the recommended vaccine schedule) in children, mainly under twenty-four months of age: • • • • • • • • • •

single parenthood low level of maternal education birthplace outside of Quebec (for studies conducted in Quebec) having a Canadian-born mother living in a rural area living in an urban area4 low socio-economic status young maternal age mother tongue other than French (for studies conducted in Quebec) high birth order (later-born rather than first-born children)

Table 6.1  Characteristics of vaccine-hesitant Canadian parents and teenage girlsa Authors, year of publication, when and where the study was done

Design and methods

Number of Relevant factors associated with incomplete subjects enrolled vaccination in children and teenage girlsb (response rate if applicable)

Avis et al. 2007 Saskatchewan, 2003

Ecological study by linking data of the 10,287 children Saskatchewan Immunization Management System of children aged two and living within the city of Saskatoon between 1999 and 2002, the Saskatchewan Health Covered Population Report, and the Saskatoon Health Information and Strategic Planning System

- Low-income neighbourhoods - Single-parent families headed by females

Boulianne et al. 2013 Quebec, 2012

Mail survey on a representative sample of parents of children aged one and two years of age in Quebec

1,450 parents (74%)

- Low level of maternal education - High birth order - Delay in receiving the first vaccine - Not receiving multiple shots during the same appointment - Feeling uninformed about vaccination - Not considering vaccines useful or safe

Boulianne et al. 2011 Quebec, 2010

Mail survey on a representative sample of parents of children aged one and two years of age in Quebec

1,233 parents (63%)

- Birthplace outside of Quebec - Mother tongue other than French - High birth order - Low maternal age - Delay in receipt of the first vaccine - Not receiving multiple shots during the same appointment - Feeling uninformed about vaccination - Not considering vaccines useful (Continued)

Table 6.1  Characteristics of vaccine-hesitant Canadian parents and teenage girlsa (Continued) Authors, year of publication, when and where the study was done

Design and methods

Number of Relevant factors associated with incomplete subjects enrolled vaccination in children and teenage girlsb (response rate if applicable)

Boulianne et al. 2009 Quebec, 2008

Mail survey on a representative sample of parents of children aged one and two years of age in Quebec

1,281 parents (65%)

- Birthplace outside of Quebec - Residence in an urban area - Mother tongue other than French - High birth order - Delay in receipt of the first vaccine - Do not receive multiple shots during the same appointment - Feel uninformed about vaccination - Think there is no risk to delay vaccination

Boulianne et al. 2007 Quebec, 2006

Mail survey on a representative sample of parents of children aged one and two years of age in Quebec

844 parents (70%)

- Single parenthood - High birth order - Living in a low-income neighbourhoods - Delay in receipt of the first vaccine - Not attending daycare

Busse, Walji, and Wilson 2011 Ontario, 2010

Written questionnaire of parents of children sixteen years of age or younger who had consulted one of nine naturopath clinics

129 parents (74%)

- Feel pressure to vaccinate - Report naturopathic practitioner as most trusted resource for information on vaccination

Dubé, Defay, and Kiely 2013 Quebec, 2012

Telephone survey of a random sample of parents of children five to seventeen years of age

426 parents (48%)

- Do not consider vaccines useful, effective, or safe - Believe children receive too many vaccines - Believe a healthy lifestyle makes vaccination unnecessary - Think consulting an alternative practitioner makes vaccination unnecessary

Dummer et al. 2012 Linking of individual data of all children born in 8,245 children Nova Scotia, 2006 2006 from the Provincial Medical Insurance Physician Billing data, public health records, and census data

- Reside in more educated communities - Reside in communities with less unemployment

EKOS Research Associates 2011 Canada, 2011

Telephone Survey of a random sample of 1,745 parents Canadian parents of children under eighteen (23%) years of age

Vaccines in general - Believe vaccination unnecessary - Do not believe in vaccines HPV vaccine - Reside in Manitoba or Saskatchewan compared to other provinces - Born outside Canada - Middle-range income (from $40,000 to $69,000) - Feel lack of information - Have concerns about vaccine safety

Guay et al. 2014 Quebec, 2013c

938 parents Written questionnaire of parents of children (96%) aged five years of age and younger at twelve public vaccination sites of the Montérégie and Lanaudière regions over fifty-four vaccination days

- Do not consider vaccines useful or safe - Consider vaccination unimportant - Feel pressure to vaccinate - Consider number of vaccines too high

Guay et al. 2012 Quebec, 2009–10

Mail and Internet survey on a random sample of teenage girls aged fourteen to eighteen and their parents on HPV vaccination

Teenagers - Have concerns about vaccine safety - Parent or peer discouragement - Occasional religious practice (versus no practice) - Belong to a non-Québécois ethnic or cultural groupd

1,318 teenagers 1,319 parents (46%)

(Continued)

Table 6.1  Characteristics of vaccine-hesitant Canadian parents and teenage girlsa (Continued) Authors, year of publication, when and where the study was done

Design and methods

Number of Relevant factors associated with incomplete subjects enrolled vaccination in children and teenage girlsb (response rate if applicable)

Guay et al. 2012 Quebec, 2009–10 (continued)

Guay et al. 2009 Quebec, 2006–8

Parents - Belong to a non-Québécois ethnic or cultural groupd - Have concerns about vaccine safety - Have been advised against HPV vaccination by a health care professional other than a doctor or nurse - Their daughter does not attend school (because she had dropped out) - Have not been informed that their daughter would be offered HPV vaccination Linking of individual data from birth register 12,537 children and from the regional vaccination register of children born in the Eastern Townships region between 2003 and 2006

Guttmann et al. Linking of databases: Landed Immigrant 98,123 children 2008 Database, Hospital records (maternal and Ontario, 1997–2000 newborns), Canadian Census and Physician claims of all urban babies born in hospital between 1 July 1997 and 30 June 1998 Hamid 2008 Quebec, 2005–6

Mail survey of a representative sample of parents of children two years of age and younger in the Montérégie region

2,565 parents (56%)

- Single parenthood - Low level maternal education - Residence in less densely populated area - Low maternal age - High birth order - Low socio-economic neighbourhood - Midwife-assisted birth - Having a non-immigrant-born mother - Living in a low-income neighbourhood - Low maternal age - High birth order

Krawczyk 2012 Quebec, 2009–10

Mail survey of a representative sample of 834 parents parents of nine- to ten-year-old girls on HPV (33%) vaccination

- Do not consider vaccine safe - Low perceived vulnerability for HPV disease - Fewer benefits and more barriers to HPV vaccination

MacDonald, Mail survey of a random sample (from the 461 parents Schopflocher, immunization registry) of parents of the (43%) and Vaudry, 2014 Edmonton area of two-year-old children Alberta, date not born in 2008–9 with complete (controls) and mentioned incomplete vaccination (cases)

- Have concerns about safety - Do not consider vaccine effective - Believe that they are not susceptible to disease, that the disease would not be severe, or that vaccines were not effective enough - Perceive that getting immunizations is a “big hassle” - Consider the number of shots to be too high - Neither work nor use childcare outside home

Ogilvie et al. 2010 British Columbia, 2008–9

Telephone survey on a random sample of parents of eleven-year-old girls in grade 6 on HPV vaccination

2,025 parents (50%)

- High number of children in the family - High level of parental education - Traditional family composition

Remes et al. 2014 Ontario, 2007–10

Linking of administrative health and immunization databases of a cohort of grade-8 girls (thirteen years of age) eligible to HPV vaccination

144,047 teenagers

- Lowest and highest income quintile (compared to middle quintile) - Have fewer physician visits - Have ever refused vaccines - Reside in an area of low social and material deprivation

In the tables presented in this chapter, we have made efforts to retain the language used by the authors of the original articles. In some cases, we have slightly altered the original phrasing (e.g., of the material in the “relevant factors” columns) to enable readers to more easily compare and contrast the studies’ findings. b In most studies, which identified several factors, multivariate statistical analyses were conducted to avoid distortion of apparent associations. c While for all the studies in this table the main variable under study was child vaccination status, in the Guay et al. (2014) study, the main variable was specifically parents’ vaccine hesitancy (defined as parents who answered “yes” to the question, “Have you ever hesitated before having your child v­ accinated?).” d The exact question was open ended: “How do you identify yourself ethnically or culturally (e.g., Canadian, Québécois, Native, Chinese, Italian, Arab, Greek, etc.)?” a

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Many of the above-cited studies suggest that incomplete child vaccination is also linked to beliefs, perceptions, actions, and choices. For example, incomplete vaccination of children has been associated with the following: • • • • • • • •

delay in receipt of the first vaccine (normally at two months of age) not receiving several vaccines at once not attending daycare midwife-assisted birth parents considering vaccines unsafe or not useful parents believing vaccination is unimportant parents feeling uninformed or not adequately informed about vaccines parents feeling pressure to vaccinate

One of the above studies (Guay et al. 2009) offers a more detailed portrait of hesitant parents, since in-depth interviews were conducted with eighteen parents of either non-vaccinated infants or incompletely vaccinated infants (eight and ten parents, respectively). Nine of the parents viewed vaccination unfavourably. Surprisingly, seven viewed it favourably in general, even if their own child had not been vaccinated as recommended, while the remaining two were ambivalent. Two profiles of parents emerged from these interviews. The parents in the first profile, mostly from parents of non-vaccinated children, adopted a lifestyle and a philosophy to health based on “natural” approaches. These parents refused some vaccines for their child because they considered vaccines unnatural, an attack on their child, and a health risk. They considered the diseases for which vaccines are available to be almost non-existent (e.g., measles) or benign (e.g., chickenpox), and vaccination therefore irrelevant. Moreover, they considered vaccines unsafe, arguing that vaccines caused problems such as autism. According to these parents, their own healthy lifestyle was a protective factor against disease. For example, many claimed that breastfeeding allowed their child to defend himself/herself against infections, or that a healthy diet, good sleep habits, physical activity, hand washing, and clean ambient air would guarantee them and their children protection against diseases. If an illness were to develop, the parents would view it as a natural phenomenon that allowed their child to strengthen immunity As one parent commented, “I believe more in the human body which does self-healing by itself ” (Guay et al. 2009). As for health and health care advice, parents in this group usually preferred to consult alternative and complementary medicine practitioners, including chiropractors, naturopaths, and midwives. Finally, these generally well-educated parents described themselves as well informed about vaccination and claimed that they knew the potential advantages as well as the drawbacks.

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For parents in the second profile, vaccination was generally considered an effective means of protection, particularly in the case of an epidemic, as one parent acknowledged when she commented, “If an epidemic happens and nobody is vaccinated, it could be dangerous” (Guay et al. 2009). Nonetheless, these parents preferred to choose vaccines for protection from what they considered to be the most serious diseases, since they believed that good hygiene would suffice as protection from less severe diseases such as chickenpox. Some parents in this group were not aware that their child’s vaccination was overdue, or if they did know, they simply forgot the vaccination appointment(s). These parents generally did not wish their child to receive multiple vaccines during a single clinical visit. They displayed some vaccine hesitancy, notably because of a fear of needles or a vaccine’s side effects, and admitted to sometimes having a lack of vaccination information. They deplored the fact that immunization information was distributed by two opposing vaccination camps: strong advocates and firm opponents. The inclusion of the human papilloma virus (HPV) vaccine in public health programs in Canada for girls created a new source of vaccine-hesitant individuals: girls and their parents. Five studies were found on that topic (Table 6.1): two from Quebec (Guay et al. 2012; Krawczyk 2012), one from Ontario (Remes et al. 2014), one from British Columbia (Ogilvie et al. 2010), and the previously mentioned pan-Canadian study (EKOS Research Associates 2011), in which parents of older daughters were also asked about HPV vaccine. In these studies, the main following socio-demographic factors were associated with hesitancy: • • • •

high number of children in the family high level of parental education traditional family composition low socio-economic status and middle-range income

Although Quebec adolescents (once they turn fourteen) can decide to be vaccinated without a parent’s authorization, one of the above studies showed that parents actually play an important role in their daughters’ vaccination decision (Guay et al. 2012). Teens and parents in discussion groups reported lacking information on HPV vaccination or having the impression that the distributed information was biased in favour of vaccination. They mentioned fears about vaccine safety and fears about unknown long-term effects as reasons for rejecting HPV vaccination. One teen observed, “What is the risk of having the effects of the vaccine? We don’t know. We don’t know the long-term risk for health” (Guay et al. 2012). Furthermore, some girls did not consider HPV vaccination relevant, stating that they engaged in protected sexual activities.5 In the same vein, mothers justified their daughters’ non-vaccination by citing the

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sound sexual education they provide. Finally, to explain HPV vaccine rejection, some teenagers and parents indicated that they were completely opposed to vaccines. Likewise, teenagers who did not necessarily express anti-vaccination opinions but whose parents opposed vaccines preferred not to be vaccinated, citing trust in their parents’ judgment. Several observations obtained from the focus groups corroborate findings from the previously described surveys. Vaccine-Hesitant Adults The results from studies examining mostly seasonal influenza vaccine uptake in adults as well as vaccines against other preventable diseases (tetanus and pneumococcal) can guide us in characterizing Canadian vaccine-hesitant adults (Environics Research Group 2009; Dubé, Kiely, and Defay 2011; Guay and Côté 2008; Environics Research Group 2011; Krueger, St-Amant, and Loeb 2010; Quach et al. 2012; Dubé, Defay, and Kiely 2013; Schneeberg et al. 2014; Hobbs and Buxton 2014; Legge et al. 2014; Frère et al. 2013; Vozoris and Lougheed 2009). Table 6.2 highlights relevant characteristics associated with vaccine hesitancy in adults. All but two of the studies cited here (Krueger, St-Amant, and Loeb 2010; Frère et al. 2013) were conducted on large, random samples of adults and should provide unbiased information. Since these studies also provide information on Canadian adults’ knowledge, attitudes, behaviours, and awareness of immunization programs, we can use the data to deduce the traits of vaccine-hesitant Canadian adults in different age groups. From the above studies, Canadian adults who hesitate about vaccination appear to have the following socio-demographic traits: • lower age for influenza and pneumococcal vaccination, but higher age for tetanus vaccination • single for pregnant woman, but married or in common-law relationship for other adults • high level of education • men (for influenza, but women for tetanus and pertussis) • low income • white and black Canadians • first language other than French (in Quebec) Vaccine-hesitant Canadian adults seem to share common beliefs or perceptions: • believe they have low personal vulnerability to influenza infection • feel influenza is not a severe disease

Table 6.2  Studies of vaccine-hesitant Canadian adultsa Authors, year of publication, when and where the study was done

Design and methods

Number of subjects enrolled (response rate if applicable)

Relevant factors associated with incomplete vaccination

Dubé, Defay, and Kiely 2013

Telephone survey on a random sample of Québécois eighteen years of age and over

4,413 adults (48%)

- Younger age - Perceive: • Low vulnerability • Low flu severity • Vaccine unsafe • Low effectiveness of vaccine • Insufficient knowledge • Little influence of information in the media - Have doubts about vaccines or do not believe in vaccines - Afraid of adverse effects and have safety concerns - Lack of professional recommendation for vaccination

Dubé, Kiely, and Defay 2011 Quebec, 2010

Telephone survey on a random sample of Québécois eighteen and over

5,410 adults (20%)

- Younger age - Gender (man) - Low income - High education - First language other than French - Perceive: • Low vulnerability • Low moral responsibility • Low flu severity • Vaccine unsafe • Low effectiveness of vaccine • Insufficient knowledge • Little influence of information in the media - Lack of professional recommendation for vaccination (Continued)

Table 6.2  Studies of vaccine-hesitant Canadian adultsa (Continued) Authors, year of publication, when and where the study was done

Design and methods

Number of subjects enrolled (response rate if applicable)

Relevant factors associated with incomplete vaccination

Environics Research Group 2011 Canada, 2010 Canada’s ten provinces and three territories

Telephone survey on a random sample of Canadians aged eighteen and over

1,451 adults (Quebec sample: 12%)

- Younger age (pneumococcal vaccination) - Older age (tetanus vaccination) - Gender (man for pneumococcal vaccination; woman for tetanus vaccination) - Lack of professional recommendation for vaccination

Environics Research Group 2009 Canada, 2008 Canada’s ten provinces and three territories

Telephone survey on a random sample of Canadians aged eighteen and over

1,455 adults (Quebec sample: 14%)

- Younger age (pneumococcal vaccination) - Older age (tetanus vaccination) - Gender (man) - Lack of professional recommendation for vaccination - Gender (woman) (pertussis vaccination)

Frère et al. 2013 Quebec, 2011

Pilot project where pertussis vaccination was offered to parents of neonates in the maternity ward of a tertiary care obstetric-pediatric hospital

195 parents

Guay and Côté, 2008 Quebec, 2008

Telephone survey on a random sample of Québécois aged fifty and over

3,760 adults (62%)

- Younger age - Gender (man)

Hobbs and Buxton, Subsample analysis of the Canadian Community 10,373 subjects 2014 Health Survey – Individuals fifteen years of Canada, 2009–10 age and older reporting a total annual household income of less than $20,000; Survey on a random sample of Canadians

- Younger age - Gender (man) - Do not report social assistance - Have employment earnings (compared to seniors benefits) - Have good self-perceived health

Krueger, St-Amant, Telephone survey of adults aged sixty and Loeb 2010 years and older with clinically diagnosed Ontario, 2003–4 ­pneumonia

195 residents of Brant County (72%)

Pneumococcal vaccination - Younger age - Perceive absence of role in life of spiritual values or religious faith

Legge et al. 2014 Nova Scotia, 2010–12

12,223 pregnant women

- Low-risk pregnancy - Smoked during pregnancy - Single, widowed, or divorced - Multiparity - Live in an urban area

Analysis of a cohort of pregnant women from the provincial population-based perinatal database

Quach et al. 2012 Combination of five cycles of the Canadian 437,488 subjects Canada, 2003, Community Health Survey; 2005, 2007, 2008, Survey on random sample of Canadians aged twelve and over and 2009

- Younger age - Gender (man) - Married or in common-law relationship - Low income - High education - Ethnicityb (white and black Canadians) (Continued)

Table 6.2  Studies of vaccine-hesitant Canadian adultsa (Continued) Authors, year of publication, when and where the study was done

Design and methods

Number of subjects enrolled (response rate if applicable)

Relevant factors associated with incomplete vaccination

Schneeberg et al. 2014 Canada, 2011

On-sight survey of a convenience sample of adults aged sixty-five years or older participating in a clinical trial of seasonal influenza vaccines

863 participants (92%)

Pneumococcal vaccination - Younger age - Do not find important for adults over sixty-five to be vaccinated against pneumococcus - Have not heard about pneumococcal vaccine - Lack of professional recommendation for vaccination

Vozoris and Lougheed 2009 Canada, 2003

Subsample analysis of the Canadian Community Health Survey – Individuals twelve years of age and older reporting a chronic respiratory disease; Survey on a random sample of Canadians

17,470 individuals with chronic respiratory disease

- Younger age - Gender (man) - Live in Eastern or Western Canada compared to Ontario - Have employment earnings (compared to seniors benefits) - Current smoker - Do not have a family doctor

In the tables presented in this chapter, we have made efforts to retain the language used by the authors of the original articles. In some cases, we have slightly altered the original phrasing (e.g., of the material in the “relevant factors” columns) to enable readers to more easily compare and contrast the studies’ findings. b Ethnicity was identified by the following question: “People living in Canada come from many different cultural and racial backgrounds. Are you …?” The following choices of response were provided: white, Chinese, South Asian (e.g., Indian, Pakistani, Sri Lankan), black, Filipino, Latin American, Southeast Asian (e.g., Cambodian, Indonesian, Laotian, Vietnamese), Arab (e.g., Egyptian, Lebanese), West Asian (e.g., Afghan, Iranian), Japanese, Korean, Aboriginal (North American Indian [First Nation], Métis, Inuit), and other. a

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• • • • •

have poor personal health do not support the notion of individual moral responsibility of vaccination consider vaccines unsafe or not effective feel uninformed or not adequately informed about vaccines have not received a recommendation from a health professional in favour of vaccination • perceive the information from the media of little influence • have either not heard about, or do not consider it important to receive, the pneumococcal vaccine Finally, adults who reported that spiritual values or religious faith played no role in their lives were less likely to have received pneumococcal vaccination compared to those for whom religion or spirituality were important (Krueger, St-Amant, and Loeb 2010), and this may be another way of measuring individual moral responsibility. Discussion Now that the factors and traits associated with vaccine hesitancy in Canadians have been presented, we will examine the major common characteristics more closely, in order to determine, or even speculate, about how they relate to vaccine hesitancy. As Bramadat (chapter 1) and Dubé, Sauvageau, and Gagnon (chapter 7) suggest, it would be simplistic to treat all vaccine-hesitant people as if they belonged to a homogenous group or were responding to a similar set of social forces. For example, several factors outlined above relate to particular vaccines, such as the influenza or the HPV vaccine. It is possible, for instance, that Canadians who hesitate to receive the influenza vaccine differ from those who hesitate about other vaccines for themselves or their children. Nonetheless, for discussion purposes, these characteristics have been grouped. Also, many of the factors, even if discussed distinctly, are frequently linked (e.g., ethnicity, culture, religion, socio-economic status, neighbourhood, and geography). Finally, since other authors in this book (as noted above) explore other dimensions of risk perception, the main concern here will be to discuss the socio-demographic and behavioural characteristics as illustrated in the studies cited in Tables 6.1 and 6.2.

Poverty Whether one evaluates individual or group data on direct or indirect socio-economic indicators such as income or single parenthood, education level, maternal age, and immigration status, the data clearly indicate that poverty is related to

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incomplete or no vaccination among both Canadian children (Avis et al. 2007; Boulianne et al. 2000, Boulianne et al. 2007; Guay et al. 2009; Guttmann et al. 2008; Hudson et al. 2005; MacDonald, Schopflocher, and Vaudry, 2014; Remes et al. 2014; Valiquette et al. 1998) and adults (Dubé, Kiely, and Defay, 2011; Quach et al. 2012). The link between poverty and incomplete vaccination is seen in studies from other countries as well (Barker et al. 2006; Bond, Nolan, and Lester 1999; Dombkowski, Lantz, and Freed 2004; Gowda and Dempsey 2013; Gust et al. 2004; Larson et al. 2014; Lawrence et al. 2004; Luman et al. 2003; Santoli et al. 2004; Smith et al. 2009; Zhao, Mokdad, and Barker 2004). For example, using single parenthood as a proxy for poverty, single American parents were more likely to express doubts about vaccination, vaccinate their children late, or refuse vaccination altogether (Gust et al. 2008). The relation between an underprivileged environment and low levels of vaccination has generally been attributed to barriers associated with accessing health care (Burton-Jeangros, Golay, and Sudre 2005; Bond, Nolan, and Lester 1999). Even in Canada, which has publicly funded vaccine programs, barriers to access still exist and include language (Boulianne et al. 2009; Boulianne et al. 2011) and costs, such as transportation or lost work hours for vaccination appointments. Without rejecting the hypothesis that underprivileged children’s parents may hesitate about vaccination because of anti-vaccine attitudes, or for philosophical or religious reasons, evidence supports an alternative hypothesis related to parental disenfranchisement and more pressing day-to-day concerns about child health and nutrition, as described by some interviewees in the Eastern Townships study (Guay et al. 2009) and other studies (Roger-Achim and Gauthier 1998; Hobson-West 2003). Although poverty was associated with hesitancy in most studies, high income (Remes et al. 2014) and middle income (EKOS Research Associates 2011) in parents were linked to HPV vaccine refusal for their daughters compared to lower income parents. However, in the Remes et al. study (2014), low income was also associated with HPV vaccine refusal. The reasons for these associations are not well understood but could be related to education, as we will discuss later.

Birth Order Another socio-demographic characteristic associated with incomplete vaccination is a large family and being a child with a higher birth order (Bobo et al. 1993; Brenner et al. 2001; Guendelman, Paul, and Gilberto 1995; Schaffer and Szilagyi 1995; Valiquette et al. 1998; Boulianne et al. 2007; Danis et al. 2010; Gust et al. 2008; Gust et al. 2004; Vandermeulen et al. 2008; Bond, Nolan, and Lester 1999). While this may simply be the result of parental time constraints, it may also reflect prior unfavourable immunization experiences with ­earlier-born children

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or may be the result of more reflection on the matter and second thoughts which could represent vaccine hesitancy growing with the number of children in the family. The data are not clear on what drives this association.

Regional Differences Geography also seems to be associated with incomplete vaccination as urban and rural regional differences are observed. These geographic differences could reflect local realities and heterogeneity of Canadian regions which could reveal differences in accessibility to preventive care. However, it has been observed that people who share values which could include anti-vaccination sentiments tend to live in the same community and thus cluster in specific geographic regions (see chapter 8 by Bettinger and MacDonald in this volume). This could explain the geographic trends found in some Canadian studies. Similar patterns around geographic areas have also been noted in the western United States and have been associated with vaccine hesitancy or rejection (Gust et al. 2008; Omer et al. 2009; Siddiqui, Salmon, and Omer 2013).

Education Education levels – low levels (isolated from poverty) as well as high levels – are related to the decision to vaccinate oneself or one’s children in many studies. Outside of Canada, the evidence around education level is also mixed (Larson et al. 2014; Gowda and Dempsey 2013), with some studies indicating that a low level of education is associated with vaccine hesitancy (Gust et al. 2005) and other studies indicating that intermediate or high levels of education are associated (Bond and Nolan 2011; Burton-Jeangros, Golay, and Sudre 2005). Vaccine hesitancy in highly educated individuals is probably based on quite different considerations compared to vaccine hesitancy in less-educated individuals. Highly educated people may have thought seriously about vaccination issues, may have searched for information in many ways. As one well-educated hesitant parent noted, “[I had] discussion with my relatives, documentation, questions to my doctor … I looked at all data on adverse events after vaccination” (Guay et al. 2014). Of course, highly educated vaccine-hesitant individuals received a great deal of their information from the Internet, where anti-­vaccination sites are abundant. Less-educated people may have a hard time making up their mind about vaccination because they could feel overwhelmed by the complexity of issues associated with vaccination. They could finally find it difficult to make a decision; this in itself can lead to hesitation about vaccination. In this way, it could be easy to relate education level to level of knowledge. However, the association between

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level of knowledge about vaccination and vaccine acceptance is not straightforward. Many studies have shown that parents who choose to vaccinate their child generally have limited knowledge of vaccination and vaccine-preventable diseases compared to parents who refuse to vaccinate. These studies indicated that parents’ choice was often based on conformity. As one parent noted: “It is a societal choice, almost automatic, like taking a daily bath … because if a vaccine is recommended by the Ministry of Health it should be OK, not dangerous and ineffective” (Guay et al. 2014). In other words, as Bramadat suggests in chapter 1, many parents “farm out” their critical analysis of vaccines since it is difficult to master so much specific knowledge about vaccine or vaccine-preventable disease (Evans et al. 2001; Benin et al. 2006; Bond et al. 1998; Tickner, Leman, and Woodcock 2006; Streefland, Chowdhury, and Ramos-Jimenez 1999; Benin et al. 2006). However, studies conducted in other settings have shown that non-compliant parents appear to have looked at a lot of information about vaccination and to have considerable interest in health-related issues (Burton-Jeangros, Golay, and Sudre 2005; Cassell et al. 2006; Guay et al. 2009). Although all these data suggest interesting connections between vaccine hesitancy and levels of education (connections that vary depending on the vaccine under discussion), the mixed results clearly indicate that more research on individual vaccines is necessary to clarify the issue. Such new studies should address not only the level of education but the background of parental education (e.g., humanities, social science, and health science) and area of work. It will be important in future studies to determine and explain the often unpredictable relationship between levels of education and hesitancy about a particular vaccine. After all, debates that emerge in the broader society over the HPV vaccination – where, for instance, the pressure on the girl to get vaccinated could be perceived as an expression of an androcentric or perhaps even misogynist society – are markedly different than those that emerge over influenza or measles vaccinations as a manifestation of a “non-risk” society, and as such, we need specific analyses of the effect of education levels (and kinds of education) on the specific vaccine discourses.

Gender Given the effect of gender on other areas of health-seeking behaviour, it should come as no surprise that differences are seen in vaccination uptake, where men are generally less vaccinated. In general, women avail themselves more of health care and preventive care (Provost et al. 2012; Deeks et al. 2009), a pattern we see confirmed in vaccination studies. In spite of this, research on men’s approaches to vaccination and vaccine hesitancy is quite limited. Indeed, to our knowledge, only one U.S. study provides information on this topic (Gust et al. 2005), ­suggesting

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that a greater proportion (42 vs. 35 per cent) of fathers expressed ambivalence towards vaccination. This ambivalence is often suspended due to marital pressure, as one husband noted: “I hesitated to vaccinate my child but my wife said it was required” (Guay et al. 2014). However, this pattern is not necessary universal, as in a small pilot study on pertussis vaccination, fathers of neonates accepted vaccination in greater proportion than mothers (Frère et al. 2013). By way of a speculation about the link between gender and vaccine hesitancy, it seems that many women, especially mothers, perceive themselves to be the ones in charge of their family’s health and thus the vaccination decisions are among their duties (Burton-Jeangros, Golay, and Sudre 2005; Benin et al. 2006; Dubé et al. 2016). The strong opposition seen to the HPV vaccination originates mostly from mothers, a fact that exemplifies this supposition. It is also the case that women consult and seek advice more frequently from complementary and alternative medicine practitioners than men; as such, the higher rate of women’s hesitancy about vaccines might be related to the fact that vaccine hesitancy is more common in that cohort of practitioners (see chapter 7 in this volume). However, generally speaking, this greater vaccine hesitancy in women often results – eventually – in vaccine acceptance. A thorough investigation of why men might approach these issues differently from women is still necessary.

Ethnicity Many Canadian studies have shown that vaccination decisions appear to be linked to ethnicity and “race.” The same findings have been supported in studies from other countries (Mixer, Jamrozik, and Newsom 2007; Linn, Guralnik, and Patel 2010; Gust et al. 2008). Examining Canadians’ ethnicity in the context of vaccination is of interest. It allows us to address among others the ways in which ethnic identity and recent immigration status – as proxies for economic vulnerability, linguistic barriers, and religious minority beliefs and practices – might relate to vaccine hesitancy. Differences found in vaccine uptake among certain groups of immigrants could suggest greater ease in using health care, including vaccination services, and also different beliefs and perceptions with regard to vaccination that could vary by country of origin. For instance, new immigrants coming from countries where access barriers to vaccine are significant could be more willing to have their children or themselves vaccinated for free. In another way, one might advance the hypothesis that new immigrants of relatively morally conservative populations hesitate to accept HPV vaccination because they do not see the value in preventing a sexually transmitted disease in daughters they perceive or assume to be abstinent. New Canadians could also face language barriers

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that would make it harder for them to understand the media and literature surrounding issues such as HPV. Indeed, differences in measles, influenza, or other vaccines could be attributed to differing levels of exposure to the media controversy surrounding vaccines and to health professionals’ influence on the vaccination decision. Being shielded from negative media coverage of vaccination or anti-vaccine messages because of language barriers and relative isolation within ethnic enclaves in which the rumours about vaccines circulate freely (Mixer, Jamrozik, and Newsom 2007; Quach et al. 2012), could be among other reasons given for different acceptance of vaccine within new immigrant communities. According to results on influenza vaccination, one can posit that Canadians of Southeast Asian or Filipino descent would be less hesitant towards influenza vaccination than white or black Canadians. One possible explanation of this finding might be that people of Southeast Asian or Filipino descent have a greater awareness of historical deadly flu outbreaks that originated in influenza viruses from Asia, which might inspire them to be vaccinated. Another explanation could be that one often finds a more accepting attitude among Asian newcomers towards authority figures of the dominant culture and government of the host society.

Religion Only three of the Canadian studies that we reviewed considered a possible link between vaccination and religious beliefs. In the first study identified (EKOS Research Associates 2011), Canadian parents invoked religious beliefs or philosophical reasons to explain their children’s incomplete vaccination. Unfortunately, there are no details in this study’s report and no further explanation could be found to deepen this finding; according to the study data, it is impossible to know how to separate between those parents who opted not to vaccinate for “philosophical” as opposed to “religious” beliefs. The second study identified is the Quebec study on HPV vaccination of teenage girls, where self-reported occasional religious practice was associated with non-vaccination (Guay et al. 2012). An analogy can likely be made here with the explanation regarding non-HPV vaccination and ethnicity. It is indeed possible that in keeping with their religious practices, these teens can foresee having sexual relations exclusively in marriage. They could thus consider the prevention of HPV, which is transmitted sexually, futile since they do not consider themselves to be at risk. This hypothesis leans in the same direction as the report by Marlow and co-workers showing that British Hindu or Muslim teenage girls did not intend to receive the HPV vaccine (Marlow, Waller, and Wardle 2008).

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The third study identified focuses on Ontarian adults aged sixty-five and older who had already had pneumonia (Krueger, St-Amant, and Loeb 2010). In this study, the link was not the same: an association was found between nonvaccination for pneumococcus and a cohort of people who describe placing little value on religious faith or spiritual values in their lives. To explain this observation, one can speculate that older people who report that religious faith or spiritual values play no role in lives are likely to belong to a generation or subculture that eschewed religious self-understandings, and might therefore also be less inclined to heed exhortations from authority figures. Another explanation of this finding could be related to social networking, as suggested by the authors (Krueger, St-Amant, and Loeb 2010). We could speculate that older adults not reporting spiritual values or religious faith may receive less advice regarding immunization or may have fewer opportunities to discuss immunization because they do not participate in religious outings where they can meet people. Nonetheless, although few recent Canadian studies have demonstrated a link between religion and vaccination, in a 2002 study, forty-seven vaccination opponents in Alberta were interviewed (Kulig et al. 2002). Many of them refused all or some vaccination on the grounds of their religious beliefs (they were people of Dutch Reformed Church or the Reformed Congregation of North America, as well as Hutterites). According to members of the Dutch Reformed community, the decision not to immunize was based upon the belief that child immunization challenges the will of God. They were concerned by risks perceived to be associated with vaccination (e.g., brain damage, cancer) and by ingredients of the vaccines (e.g., mercury, lead). Hutterites also indicated that God’s will ought to determine the health status of children. They did not believe vaccines were effective and even thought vaccines were harmful to children because booster shots are needed (Kulig et al. 2002). As several authors in this book have observed, epidemics of vaccine-­ preventable diseases have been linked to religion in the past. In recent years in Canada, outbreaks of measles, mumps, and rubella have been clearly linked to vaccination refusal for religious reasons (see chapter 8 by Bettinger and MacDonald; cf. Hahné et al. 2005; Wielders et al. 2011; Dallaire et al. 2009; Bureau de surveillance et de vigie 2015; Deeks et al. 2014; BC Centre for Disease Control 2014). According to all this data, like other socio-demographic factors, associations between religion and vaccine hesitancy cannot be ignored. The role of religion in vaccination decision and uptake is complex (Grabenstein 2013), as Bramadat argues in chapter 1. Canadians who hesitate about or reject vaccines on religious grounds share some concerns with those groups who are motivated by what we are calling cultural rather than religious convictions, as one can see in La Mission de l’Esprit-Saint, a religious movement involved in the 2015 Quebec

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measles outbreak (159 cases as of 17 April 2015). This community fully espouses the “natural” paradigm promoted by some vaccine-hesitant Canadians: Prevention of every disease by injecting vaccines or specific serums, repeated medical exams to the population, and building huge hospitals are costly and of little effectiveness in developing the nation’s health. Health must be a natural thing which one doesn’t have to monitor. (La Mission de l’Esprit-Saint 2015; translated by Maryse Guay)

Our understanding of the specifically religious features of vaccine hesitancy for groups such as La Mission de l’Esprit-Saint is just in its infancy. Although these small groups seem schismatic or sectarian, they do not exist in a vacuum. In-depth research is needed for us to comprehend the relationships between the cosmologies, theologies, and theodicies (explanations for why bad things happen to good people) of such small groups and the larger society or the larger religious traditions from which they have diverged. Conclusion Depending on the recommended vaccines and the age groups, vaccine-hesitant individuals seem to share certain – but obviously not all – characteristics related to socio-economic status, education level, gender, religion, geographic area, and ethnicity/culture. Given the heterogeneity of vaccine-hesitant Canadians, it is not possible to provide a comprehensive portrait. However, it is useful to reflect upon objective characteristics evident among vaccine-critical cohorts. Due to the diversity within the subcultures associated with vaccine hesitancy and refusal, studies specifically addressing vaccine-hesitant Canadians at all points along the acceptance–refusal continuum should be conducted, so that a more accurate portrait can be painted. As hesitancy is a state of indecision, it is difficult to measure (Dubé et al. 2013). It is hard to have a clear picture of vaccine hesitancy at the population level because hesitancy is not directly related to vaccine uptake. Vaccine-hesitant individuals may accept all recommended vaccines in a timely manner, but still have important doubts in doing so. One parent in our study commented: “Some vaccines make me hesitate and I’m still thinking about it. However, up to now, all the vaccines were given [to my child] according to the schedule and on time” (Guay et al. 2014). In addition, as indicated, hesitancy can vary according to the vaccine involved (one can be hesitant regarding the flu vaccine, reject the HPV vaccine, but accept with confidence all others), with newer vaccines usually engendering more hesitancy (Gust et al. 2008; Freed et al. 2010; Bedford and Lansley 2007). Although survey instruments have been developed and validated in the United States (Opel et al. 2013; Gust et al. 2008), the differences in the health care system, social

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context, and vaccine programs necessitate a tool adapted to the Canadian population. In particular, religion arguably functions somewhat differently in Canadian society than it does in the United States and Europe (see Bramadat’s chapter 1 and introduction in this volume). As such, some specific attention to the specificities of the Canadian religious context and social history – work remaining to be done by other scholars – will help to round out our perspective on the vaccine-hesitant community. NOTES 1 The literature indicates that people who hesitate about vaccination do not have the same attitudes or behaviours as those who refuse vaccination. For reasons later discussed, however, we will group together non-vaccinated and incompletely vaccinated individuals. 2 We should also note that the characteristics of vaccinated Canadians (or parents of vaccinated Canadian children) who at some point hesitated but ultimately did get vaccinated are probably poorly represented by the data discussed here. As well, most of the cited studies were carefully conducted and are generally of good quality, but the possibility of selection biases must be taken into account for several of them (e.g., in studies using representative samples with a weak rate of participation or studies on convenience samples where bias of self-selection disadvantages hesitant people). Nonetheless, the convergence of results is reassuring, as is the fact that much of the data are corroborated by similar observations made outside of Canada, including several studies that specifically examined vaccine hesitancy. Although every effort was made to include most Canadian studies based on the pre-set criteria (published between 2007 and 2014), it is possible that not all studies were identified and that other characteristics that could be linked to vaccine hesitancy have not been assessed. The studies surveyed examined mostly non-vaccination or incomplete vaccination. 3 Throughout this chapter we will quote vaccine-hesitant individuals; unless specified, we derived these passages mainly from a survey of parents attending public vaccination clinics in Quebec who mentioned the reasons why they were hesitant about vaccination (Guay et al. 2014). 4 The original variable was taux de population urbaine, which we have translated by the proxy term “density.” 5 Safe sexual practices (namely condom use) do not provide complete protection from HPV infections, as the infection is spread by skin-to-skin contact that is not entirely prevented with condom use. It is estimated that approximately thirty per cent of university female student are infected with HPV, the infection being generally acquired, on average, 2.6 months after the first intercourse (Akom and Venne 2002).

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Dubé, E., M. Kiely, and F. Defay. 2011. Enquête québécoise sur la vaccination contre la grippe A(H1N1), la grippe saisonnière et le pneumocoque. Quebec: Institut national de santé publique du Québec. Dubé, E., C. Laberge, M. Guay, P. Bramadat, R. Roy, and J.A. Bettinger. 2013. “Vaccine Hesitancy: An Overview.” Human Vaccines & Immunotherapeutics 9 (8): 1763–73. http://dx.doi.org/10.4161/hv.24657. Dubé, E., M. Vivion, C. Sauvageau, A. Gagneur, R. Gagnon, and M. Guay. 2016. “‘Nature Does Things Well, Why Should We Interfere?’ Vaccine Hesitancy Among Mothers.” Qualitative Health Research 26 (3): 411–25. Dummer, T.J., Y. Cui, R. Strang, and L. Parker. 2012. “Immunization Completeness of Children under Two Years of Age in Nova Scotia, Canada.” Canadian Journal of Public Health 103 (5): e363–7. EKOS Research Associates. 2011. Survey of Parents on Key Issues Related to Immunization – Final Report. Ottawa: EKOS Research Associates. Environics Research Group. 2009. Enquête nationale sur la vaccination des adultes canadiens (ENV adultes) – 2008 QUÉBEC. Ottawa: Environics Research Group. – 2011. Canadian Adult National Immunization Coverage (NICS) – 2010 QUEBEC. Ottawa: Environics Research Group. Evans, M., H. Stoddart, L. Condon, E. Freeman, M. Grizzell, and R. Mullen. 2001. “Parents’ Perspectives on the MMR Immunisation: A Focus Group Study.” British Journal of General Practice 51: 904–10. Freed, G.L., S.J. Clark, A.T. Butchart, D.C. Singer, and M.M. Davis. 2010. “Parental Vaccine Safety Concerns in 2009.” Pediatrics 125 (4): 654–9. http://dx.doi. org/10.1542/peds.2009-1962. Frère, J., P. De Wals, P. Ovetchkine, L. Coic, F. Audibert, and B. Tapiero. 2013. “Evaluation of Several Approaches to Immunize Parents of Neonates against B. Pertussis.” Vaccine 31 (51): 6087–91. http://dx.doi.org/10.1016/j.vaccine.2013.09.043. Gowda, C., and A.F. Dempsey. 2013. “The Rise (and Fall?) of Parental Vaccine Hesitancy.” Human Vaccines & Immunotherapeutics 9 (8): 1755–62. http://dx.doi. org/10.4161/hv.25085. Grabenstein, J.D. 2013. “What the World’s Religions Teach, Applied to Vaccines and Immune Globulins.” Vaccine 31 (16): 2011–23. http://dx.doi.org/10.1016/j.vaccine.2013.02.026. Guay, M., P. Clément, A. Hamid, J. Lemaire, C. Sauvageau, E. Dubé, C. Vanier, N. Boulianne, and M. Landry. 2012. Évaluation de l’implantation du Programme de vaccination contre les VPH chez les adolescentes du Québec. Quebec: Institut national de santé publique du Québec. Guay, M., and L. Côté. 2008. Enquête québécoise sur les couvertures vaccinales contre l’influenza et le pneumocoque 2008. Montreal: Institut de la statistique du Québec et Institut national de santé publique du Québec. Guay, M., F. Gallagher, G. Petit, S. Ménard, P. Clément, and G. Boyer. 2009. Pourquoi les couvertures vaccinales chez les nourrissons de l’Estrie sont-elles sous-optimales?

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Sherbrooke: Centre de santé et de services sociaux – Institut universitaire de gériatrie de Sherbrooke. Guay, M., M. Ghorbel, J. Lemaire, E. Cadieux, J. Désilets, P. Clément, C. Vanier, S. Briand, E. Dubé, C. Boulet, et al. 2014. “Vaccine Hesitation among Quebec Parents of Children Aged 2 Months to 5 Years.” Poster presented at the Canadian Immunization Conference, Ottawa, ON, 2–4 December. Guendelman, S., E. Paul, and C. Gilberto. 1995. “The Effects of Maternal Behaviors and Other Risk Factors on Immunization Status among Mexican-American Infants.” Pediatrics 95 (6): 823–8. Gust, D.A., C. Brown, K. Sheedy, B. Hibbs, D. Weaver, and G. Nowak. 2005. “Immunization Attitudes and Beliefs among Parents: Beyond a Dichotomous Perspective.” American Journal of Health Behavior 29 (1): 81–92. http://dx.doi. org/10.5993/AJHB.29.1.7. Gust, D.A., N. Darling, A. Kennedy, and B. Schwartz. 2008. “Parents with Doubts about Vaccines: Which Vaccines and Reasons Why.” Pediatrics 122 (4): 718–25. http://dx.doi.org/10.1542/peds.2007-0538. Gust, D.A., T.W. Strine, E. Maurice, P. Smith, H. Yusuf, and M. Wilkinson. 2004. “Underimmunization among Children: Effects of Vaccine Safety Concerns on Immunization Status.” Pediatrics 114 (1): e16–22. http://dx.doi.org/10.1542/ peds.114.1.e16. Guttmann, A., D. Manuel, T.A. Stukel, M. Desmeules, G. Cernat, and R.H. Glazier. 2008. “Immunization Coverage among Young Children of Urban Immigrant Mothers: Findings from a Universal Health Care System.” Ambulatory Pediatrics 8 (3): 205–9. http://dx.doi.org/10.1016/j.ambp.2008.01.010. Hahné, S., J. Macey, G. Tipples, P. Varughese, A. King, R. van Binnendijk, H. Ruijs, J. van Steenbergen, A. Timen, A.M. van Loon, et al. 2005. “Rubella Outbreak in an Unvaccinated Religious Community in the Netherlands Spreads to Canada.” Eurosurveillance 10 (20): 1–4. Hamid, A. 2008. Évaluation de la couverture vaccinale des jeunes enfants de la Montérégie au regard des facteurs sociodémographiques et impact de l’ajout de nouveaux vaccins, Département des sciences de la santé communautaire. Sherbrooke: Université de Sherbrooke. Hobbs, J.L., and J.A. Buxton. 2014. “Influenza Immunization in Canada’s Low-Income Population.” BMC Public Health 14: 740. http://dx.doi.org/10.1186/1471-2458-14-740. Hobson-West, P. 2003. “Understanding Vaccination Resistance: Moving beyond Risk.” Health Risk & Society 5 (3): 273–83. http://dx.doi.org/10.1080/13698570310001606978. Hudson, P., R. Allard, L. Joseph, and L. Valiquette. 2005. “Couverture vaccinale des enfants de 2 ans à Montréal – 2003.” Canada Communicable Disease Report 31 (15): 166–7. Krawczyk, A. 2012. “Cancer Prevention and the Human Papillomavirus Vaccine: Psychosocial and Behavioural Factors Involved in Vaccination Decision-Making.” PhD diss., McGill University.

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Krueger, P., O. St-Amant, and M. Loeb. 2010. “Predictors of Pneumococcal Vaccination among Older Adults with Pneumonia: Findings from the Community Acquired Pneumonia Impact Study.” BMC Geriatrics 10: 44. http://dx.doi.org/10.1186/14712318-10-44. Kulig, J.C., C.J. Meyer, S.A. Hill, C.E. Handley, S.M. Lichtenberger, and S.L. Myck. 2002. “Refusals and Delay of Immunization within Southwest Alberta. Understanding Alternative Beliefs and Religious Perspectives.” Canadian Journal of Public Health 93 (2): 109–12. La Mission de l’Esprit-Saint. 2015. “L’eugénisme.” Accessed 17 April 2015, http://www. mission-de-lesprit-saint.org/Message/eugenisme.php. Larson, H.J., C. Jarrett, E. Eckersberger, D.M. Smith, and P. Paterson. 2014. “Understanding Vaccine Hesitancy around Vaccines and Vaccination from a Global Perspective: A Systematic Review of Published Literature, 2007–2012.” Vaccine 32 (19): 2150–9. http://dx.doi.org/10.1016/j.vaccine.2014.01.081. Lawrence, G.L., B.P. Hull, C.R. MacIntyre, and P.B. McIntyre. 2004. “Reasons for Incomplete Immunisation among Australian Children. A National Survey of Parents.” Australian Family Physician 33 (7): 568–71. Legge, A., L. Dodds, N.E. MacDonald, J. Scott, and S. McNeil. 2014. “Rates and Determinants of Seasonal Influenza Vaccination in Pregnancy and Association with Neonatal Outcomes.” Canadian Medical Association Journal 186 (4): E157–64. http://dx.doi.org/10.1503/cmaj.130499. Linn, S.T., J.M. Guralnik, and K.V. Patel. 2010. “Disparities in Influenza Vaccine Coverage in the United States, 2008.” Journal of the American Geriatrics Society 58 (7): 1333–40. http://dx.doi.org/10.1111/j.1532-5415.2010.02904.x. Luman, E.T., M.M. McCauley, A. Shefer, and S.Y. Chu. 2003. “Maternal Characteristics Associated with Vaccination of Young Children.” Pediatrics 111 (5): 1215–18. MacDonald, S.E., D.P. Schopflocher, and W. Vaudry. 2014. “Parental Concern about Vaccine Safety in Canadian Children Partially Immunized at Age 2: A Multivariable Model Including System Level Factors.” Human Vaccines & Immunotherapeutics 10 (9): 2603–11. http://dx.doi.org/10.4161/21645515.2014.970075. Marlow, L.A., J. Waller, and J. Wardle. 2008. “Sociodemographic Predictor of HPV Testing and Vaccination Acceptability: Results from a Population-Representative Sample of British Women.” Journal of Medical Screening 15 (2): 91–6. http://dx.doi. org/10.1258/jms.2008.008011. Mixer, R.E., K. Jamrozik, and D. Newsom. 2007. “Ethnicity as a Correlate of the Uptake of the First Dose of Mumps, Measles and Rubella Vaccine.” Journal of Epidemiology and Community Health 61 (9): 797–801. http://dx.doi.org/10.1136/ jech.2005.045633. Ogilvie, G., M. Anderson, F. Marra, S. McNeil, K. Pielak, M. Dawar, M. McIvor, T. Ehlen, S. Dobson, D. Money, et al. 2010. “A Population-Based Evaluation of a

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Public Funded, School-Based HPV Vaccine Program in British Columbia, Canada: Parental Factors Associated with HPV Vaccine Receipt.” PLoS Medicine 7 (5): e1000270. http://dx.doi.org/10.1371/journal.pmed.1000270. Omer, S.B., D.A. Salmon, W.A. Orenstein, M.P. deHart, and N. Halsey. 2009. “Vaccine Refusal, Mandatory Immunization, and the Risks of Vaccine-Preventable Diseases.” New England Journal of Medicine 360 (19): 1981–8. http://dx.doi.org/10.1056/ NEJMsa0806477. Opel, D.J., R. Mangione-Smith, J.A. Taylor, C. Korfiatis, C. Wiese, S. Catz, and D.P. Martin. 2011. “Development of a Survey to Identify Vaccine-Hesitant Parents.” Human Vaccines 7 (4): 419–25. http://dx.doi.org/10.4161/hv.7.4.14120. Opel, D.J., J.A. Taylor, C. Zhou, S. Catz, M. Myaing, and R. MangioneSmith. 2013. “The Relationship between Parent Attitudes about Childhood Vaccines Survey Scores and Future Child Immunization Status: A Validation Study.” JAMA Pediatrics 167 (11): 1065–71. http://dx.doi.org/10.1001/ jamapediatrics.2013.2483. Provost, S., O. Lemoine, B. Simard, J. F. Levesque, R. Pineault, and P. Tousignant. 2012. Les pratiques cliniques préventives: résultats de l’enquête populationnelle 2010. Montreal: Agence de la santé et des services sociaux de Montréal, Direction de santé publique – Institut national de santé publique du Québec, Direction de l’analyse et de l’évaluation des systèmes de soins et services. Quach, S., J.S. Hamid, J.A. Pereira, C.L. Heidebrecht, S.L. Deeks, N.S. Crowcroft, S.D. Quan, S. Brien, and J.C. Kwong, and the Public Health Agency of Canada/Canadian Institutes of Health Research Influenza Research Network Vaccine Coverage Theme Group. 2012. “Influenza Vaccination Coverage across Ethnic Groups in Canada.” Canadian Medical Association Journal 184 (15): 1673–81. http://dx.doi.org/10.1503/ cmaj.111628. Remes, O., L.M. Smith, B.E. Alvarado-Llano, L. Colley, and L.E. Levesque. 2014. “Individual- and Regional-Level Determinants of Human Papillomavirus (HPV) Vaccine Refusal: The Ontario Grade 8 HPV Vaccine Cohort Study.” BMC Public Health 14 (1): 1047. http://dx.doi.org/10.1186/1471-2458-14-1047. Roger-Achim, D., and J. Gauthier. 1998. “Le diagnostic social.” Le médecin du Québec 33 (12): 29–35. Santoli, J.M., N.J. Huet, P.J. Smith, L.E. Barker, L.E. Rodewald, and M. Inkelas. 2004. “Insurance Status and Vaccination Coverage among US Preschool Children.” Pediatrics 113 (6): 1959–64. Schaffer, S.J., and P.G. Szilagyi. 1995. “Immunisation Status and Birth Order.” Archives of Pediatrics & Adolescent Medicine 149 (7): 792–7. http://dx.doi.org/10.1001/ archpedi.1995.02170200082013. Schneeberg, A., J.A. Bettinger, S. McNeil, B.J. Ward, M. Dionne, C. Cooper, B. Coleman, M. Loeb, E. Rubinstein, J. McElhaney, et al. 2014. “Knowledge, Attitudes,

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Beliefs and Behaviours of Older Adults about Pneumococcal Immunization, a Public Health Agency of Canada/Canadian Institutes of Health Research Influenza Research Network (PCIRN) Investigation.” BMC Public Health 14 (1): 442. http:// dx.doi.org/10.1186/1471-2458-14-442. Siddiqui, M., D.A. Salmon, and S.B. Omer. 2013. “Epidemiology of Vaccine Hesitancy in the United States.” Human Vaccines & Immunotherapeutics 9 (12): 2643–8. http:// dx.doi.org/10.4161/hv.27243. Smith, P.J., N. Jain, J. Stevenson, N. Mannikko, and N.A. Molinari. 2009. “Progress in Timely Vaccination Coverage among Children Living in Low-Income Households.” Archives of Pediatrics & Adolescent Medicine 163 (5): 462–8. http://dx.doi. org/10.1001/archpediatrics.2009.25. Streefland, P., A.M.R. Chowdhury, and P. Ramos-Jimenez. 1999. “Patterns of Vaccination Acceptance.” Social Science & Medicine 49 (12): 1705–16. http://dx.doi. org/10.1016/S0277-9536(99)00239-7. Tickner, S., P.J. Leman, and A. Woodcock. 2006. “Factors underlying Suboptimal Childhood Immunisation.” Vaccine 24 (49–50): 7030–6. http://dx.doi.org/10.1016/j. vaccine.2006.06.060. Valiquette, L., R. Allard, M. Guay, J. Carsley, and M. Bier. 1998. Enquête sur la couverture vaccinale des enfants de 24 à 36 mois de Montréal-Centre. Montreal: Direction de la santé publique. Vandermeulen, C., M. Roelants, H. Theeten, P. Van Damme, and K. Hoppenbrouwers. 2008. “Vaccination Coverage and Sociodemographic Determinants of MeaslesMumps-Rubella Vaccination in Three Different Age Groups.” European Journal of Pediatrics 167 (10): 1161–8. http://dx.doi.org/10.1007/s00431-007-0652-3. Vozoris, N.T., and M.D. Lougheed. 2009. “Influenza Vaccination among Canadians with Chronic Respiratory Disease.” Respiratory Medicine 103 (1): 50–8. http://dx.doi. org/10.1016/j.rmed.2008.08.004. Wielders, C.C., R.S. van Binnendijk, B.E. Snijders, G.A. Tipples, J. Cremer, E. Fanoy, S. Dolman, W.L. Ruijs, H.J. Boot, H.E. de Melker, and S.J. Hahné. 2011. “Mumps Epidemic in Orthodox Religious Low-Vaccination Communities in the Netherlands and Canada, 2007 to 2009.” Eurosurveillance 16 (41): 1–9. Zhao, Z., A.H. Mokdad, and L. Barker. 2004. “Impact of Health Insurance Status on Vaccination Coverage in Children 19–35 Months Old, United States, 1993–1996.” Public Health Reports 119 (2): 156–62.

7 Vaccine Hesitancy and the Use of Complementary and Alternative Medicine eve dubé , chantal sauvageau , and dominique gagnon

When we encounter information that contradicts our beliefs … we tend to doubt the information, not ourselves. – Eula Biss, On Immunity: An Inoculation (2014) The days when health officials could issue advice, based on the very best medical and scientific data, and expect populations to comply, may be fading. – Margaret Chan, WHO Director-General, Report to the 126th Executive Board, 2010 (quoted in Larson and Schulz 2015)

Introduction All human cultures make use of medical systems, defined in a broad sense as a set of techniques and practices that aim to restore and maintain health. These systems have common characteristics (e.g., methods to normalize health and diagnose disease, defined roles and careers for healers). However, each system is always situated in a distinctive historical and socio-political context (­ Kleinman 1997). Prior to the nineteenth century, North American medicine was characterized as a set of health care options, in which the practitioners did not belong to distinct professional bodies (Kaptchuk and Eisenberg 2001). Instead, health care was dispensed mainly by botanical healers and midwives, in addition to surgeons, barber-surgeons, and apothecaries (Kaptchuk and Eisenberg 2001). The few university-trained doctors cared for members of the privileged class (Kaptchuk and Eisenberg 2001). Gradually, in the early twentieth century, biomedicine, also called allopathic medicine or conventional Western medicine, emerged as the dominant paradigm. The emergence of biomedicine is associated with the d ­ iscovery of “evidence” of disease made through advances in anatomical

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pathology, human body dissection, and microbiology (Pélissier-Simard and Xhignesse 2008; Kleinman 1997). Despite the existence of different forms of medicine and of healing modalities that rose up against the emerging medical orthodoxy (e.g., hydropaths and homeopaths), biomedicine gradually established its legitimacy and hegemony by obtaining state regulation of medical teaching and practice (Kaptchuk and Eisenberg 2001). As discussed by Bramadat, Brunk, and Roy in this volume (chapters 1, 3, and 4, respectively), knowledge produced and used by biomedical scientists is framed as objective, neutral, and universal. Biomedicine examines abnormalities in the structure or function of organs and the physiological system; indeed, biomedicine is focused on “disease.” Other dimensions of the notion of disease – such as the subjective individual experience of suffering (“illness”), or the sociocultural construct of disvalued states of health (“sickness”) – are for the most part subordinated in biomedical discourse to the dominant mechanistic definition (Kleinman 1997; Massé 1995). Only in the 1960s, during the counter-culture revolutions, did alternative health practices such as homeopathy and naturopathy regain popularity. Meditation, yoga, and visualization became growing trends in large urban centres. As “take back your body” became the rallying cry, “medicalization” and paternalism were denounced. Feminist movements, for instance, deplored the paternalistic therapeutic relation inherent in biomedical health care (Kaptchuk and Eisenberg 2001). While attempting to take stock of these different trends in the Canadian context, this chapter aims to foster a better understanding of alternative health care approaches. After defining these approaches in general terms, we will take a closer look at four types of alternative practice – naturopathy, homeopathy, chiropractic, and midwifery – chosen not just because they are among the best known and most popular in Canada but because they are often associated with a fairly well-defined position on vaccination. Finally, we will conclude by describing the potential influences of these approaches on the phenomenon of vaccine hesitancy in the broader culture. Clarifying the relationship between the increasing interest in complementary and alternative medicine and the concomitant increase in vaccine hesitancy helps to illustrate the ways in which broad cultural shifts – related to crises of trust and truth – are manifested in a looming public health challenge. Conventional, Alternative, Complementary, and Parallel Medicines: Some Definitions If there is any consensus around alternative medical practices, it is that there is no consensus on their definition and scope. In the 1970s and 1980s, one spoke mainly of “holistic” approaches and “natural” medicine (Pélissier-Simard

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and Xhignesse 2008). Currently, the expression “complementary and alternative medicine” (CAM) seems to be the most commonly used phrase to gather together these heterodox practices and subcultures (Wieland, Manheimer, and Berman 2011). But despite its frequent use in the academic and popular presses, there is still debate around this term. Some people think that since not all approaches included under this umbrella term are forms of medicine, the expression “complementary and alternative approaches” would be preferable (Health Canada 2001). Others question the choice of the adjective “alternative,” as it is understood in the sense of replacement; they propose the expression “complementary and parallel approaches” (Health Canada 2001). For instance, one of the agencies of the National Institutes of Health in the United States, the National Center for Complementary and Alternative Medicine (now renamed the National Center for Complementary and Integrative Health), after having recommended the use of the term “complementary and alternative medicine” for many years revised its position in July 2014 and now opts for the term “complementary health approaches” when discussing the practices and products studied for different health conditions (NIH 2016). Dissenting voices notwithstanding, we will use the expression CAM, since it is most frequently used in current literature.1 It is also challenging to choose an appropriate term to refer to Western medicine; options consist of “conventional” biomedicine, “allopathic” medicine, “scientific” medicine. Nonetheless, for the sake of expediency, we will use the term “biomedicine” in this chapter. Defining the vast and constantly shifting CAM scope of practice and the boundaries that separate it from biomedicine is a complex undertaking. CAM is often defined by what it is not: it is not taught in medical schools, not reliant upon the paradigm of biomedical concepts, not practiced in conventional hospitals, not scientifically proven, and so on (Ernst, Cohen, and Stone 2004). A commonly used definition is the following: Complementary and alternative medicine is a broad domain of resources that encompasses health systems, modalities, and practices and their accompanying theories and beliefs, other than those intrinsic to the dominant health system of a particular society or culture in a given historical period. CAM includes such resources perceived by their users as associated with positive health outcomes. Boundaries within and between the CAM domain and the domain of the dominant system are not always sharp or fixed (Institute of Medicine [US] Committee on the Use of Complementary and Alternative Medicine by the American Public 2005). Moreover, this very broad vision is of little practical use (Wieland, Manheimer, and Berman 2011). Indeed, up to four thousand practices or disciplines have been categorized as CAM (Pélissier-Simard and Xhignesse 2008). Some of these approaches represent complete health care systems, from

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Table 7.1  Complementary health approaches classification by NCCIH Natural products Include a variety of products, such as herbs, vitamins, minerals, and probiotics Mind and body practices Include a large and diverse group of procedures or techniques administered or taught by a teacher or a trained practitioner. Examples: acupuncture, massage therapy, meditation, movement therapies such as Pilates and Rolfing, relaxation techniques such as guided imagery and breathing exercises, spinal manipulation, qi gong, tai chi, yoga, healing touch, hypnotherapy Other complementary health approaches Natural products and mind and body practices capture most complementary health approaches. Some approaches may not fit into either of these groups. Examples: traditional Chinese medicine, Ayurvedic medicine, traditional healers, homeopathy, naturopathy Source: https://nccih.nih.gov/health/integrative-health.

diagnosis to treatment – for example, traditional Chinese medicine – while other approaches are only piecemeal forms of treatment or prevention – for example, the use of food supplements, commercial weight-loss or exercise programs, and support groups such as Alcoholics Anonymous (Health Canada 2001). Other CAM definitions can be found in classification systems designed to structure approaches and practices in different categories. One of the agencies of the National Institutes of Health in the United States, the National Center for Complementary and Integrative Health (NCCIH), an organization that funds research on complementary health and parallel approaches, proposes the following classification, whereby approaches are divided into general categories: natural products, mind and body practices, and other complementary health approaches (see Table 7.1). This type of classification has its limits: since the categories are broad and not formally defined, some practices can fit into more than one category. Tataryn (2002) proposes four paradigms to reflect the various approaches and practices with regard to health and disease (Table 7.2). The first paradigm, “the body,” corresponds to therapies that “target biologic factors as the primary determinants of health” (877). The “body-mind” paradigm underscores the influence of the mind on health and disease. The third paradigm, “body-energy,” includes therapies that presuppose that “all life, indeed, the entire universe, exists via the balance, flow and interplay of subtle energies” (885). The fourth paradigm, “body-spirit,” implies “the existence of nonlocal, nonphysical being or beings or states of consciousness that is/are transcendental to but able to act on the

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Table 7.2  Tataryn’s four paradigms of health and disease: Classifying common therapies Body

Body-Mind Body-Energy Body-Spirit

a)  Physical substances •  Diets and supplements Aromatherapy, Gerson diet, herbal remedies, macrobiotic diet, vitamin and mineral therapies •  Extracts and concentrates Antineoplastons, live-cell therapies, laetrile, ozone therapy, shark cartilage • Chemicals/synthetics Chemotherapy, 714-X, chelation therapy b)  Physical manipulation Massage, physiotherapy, chiropractic, enemas, colonic irrigation, hypo/hyperthermic therapy, radiotherapy, surgery Affirmations/suggestion, counselling, dream interpretation, expressive art therapies, hypnosis, imagery/visualisation, meditation, psychotherapy, stress reduction, support groups Acupressure, acupuncture, Ayurvedic medicine, Chinese medicine, crystal therapy, homeopathy, magnetic therapy, polarity therapy, qigong, reflexology, reiki, therapeutic touch, tai chi, yoga Ceremonies and rituals, dervish dancing, exorcism, faith healing, First Nations traditions, laying on of hands, magic/occult practices, prayer, psychic diagnosis, psychic interventions, sacraments/rites, shamanic healing

Source: Tataryn (2002).

material universe. Such beings include God, Jehovah, Tao, Buddha, Atma, the Source, angels, spirits, non-local mind, et cetera” (886). Tataryn (2002) advances that these paradigms are hierarchical, each subsuming the assumptions of the previous ones. As an example, the body-spirit paradigm considers the body, mind, energy, and spirit to be dimensions of health and disease. This classification is of interest since it does not dichotomize biomedicine and CAM. Instead, it opts for an approach that classifies practices based on their underlying assumptions regarding the nature of health and disease, as well as on their therapies and approaches. The overlap one finds among the many forms and many adherents of CAM expresses itself in the complex stories people tell when describing their reasons for being vaccine-hesitant. It is indeed often difficult to tell when one’s hesitancy is a function of one’s resistance to some aspect of the dominant “body” paradigm or a function of one’s attraction to unseen (i.e., spiritual, emotional, intuitive) forces. As Tables 7.1 and 7.2 suggest, the CAM scope of practice is very broad. When thinking about CAM, strict dichotomization between biomedicine and CAM should not be taken for granted (Fadlon 2005; Ning 2013). For instance, based on extensive fieldwork in urban Israel, Fadlon (2005) explains the increasing

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popularity of CAM (which she names “non-conventional medicine”) by a process of “domestication.” The success of CAM could thus be explained by its fusion with biomedicine, “creating a hybrid form of medical treatment that is ultimately foreign enough to be fascinating, but also familiar enough not to be disconcerting” (7). For the rest of this chapter, we will look more deeply into four forms of CAM: naturopathy, homeopathy, chiropractic, and midwifery. Although homeopathy is a therapeutic approach used in naturopathy, we will give it special attention, since it is one of the most popular naturopathic approaches. Moreover, homeopaths’ reluctance to support vaccination and the influence this may have on their clients has been a frequent concern for biomedical care providers (Canadian Paediatric Society 2005; Ernst 2001; Weeks 2015a, 2015b; Picard 2015). Similarly, midwifery is publicly funded and practiced in biomedical health settings in the ten Canadian provinces and territories where it is state regulated, which is not congruent with most definitions of CAM as being “medical practices that are not presently accepted as part of orthodox, state-regulated health care” (Ning 2013, 2). Although some scholars, for this reason, would not consider midwifery to be an example of CAM, we chose to examine this practice because there is evidence that children born with the assistance of a midwife are significantly less likely to be immunized than are those born without such assistance (Boulianne et al. 2011; Guay et al. 2009; Zhang et al. 2008; Boulianne et al. 2013). In addition, midwifery practice in Canada, which was still unregulated in the 1990s, has emerged at the margins of biomedicine at the demand of women’s groups that fought the “medicalization” of pregnancy and birth and sought to reappropriate motherhood (Gagnon 2012). Indeed, some midwives openly question biomedical norms and practices. Moreover, as shown by the results of a recent literature review, use of CAM therapies – such as herbal medicine, acupuncture, and aromatherapy – is widespread in midwifery practice (Hall, McKenna, and Griffiths 2012). Apart from the fact that a body of literature exists on the relationship between these forms of CAM and vaccination hesitancy (see Guay, Dubé, and Laberge, chapter 6 in this volume), these approaches were chosen because they are among the most popular in Canada. In fact, in the most recent populationwide data from the 2003 Canadian Community Health Survey, 20 per cent of Canadians aged twelve years or older, or 5.4 million people, indicated that they have used non-traditional or complementary health care during the previous year, showing a notable upward trend compared with the 1994–5 data, which showed that only 15 per cent of Canadians aged eighteen years or older had used such forms of health care (Park 2005). Chiropractors were consulted most frequently (by 11 per cent), and 2 per cent of respondents had consulted

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a homeopath or naturopath (Park 2005). Furthermore, 6.1 per cent of births in Canada were attended by a midwife from 2006 to 2007 (“What Mothers Say” 2009). It is difficult to describe the characteristics of CAM users in Canada. Even if sociocultural factors influencing CAM use are not well understood, studies consistently show that CAM users are more likely to be female, better educated, middle-aged, and in poorer health than non-users (Harris et al. 2012). However, this situation might be prone to change, and Canadian research indicated that CAM use “may no longer be a phenomenon restricted to the more highly educated and affluent in society” (Andrews and Boon 2005, 22). For each selected CAM, we will outline the common therapeutic practices and approaches, the associated perception of health and disease, and each therapy’s level of institutionalization in Canada.2 This information has been collected principally from the websites of the major Canadian professional associations of each of these CAM therapies. The following account therefore reflects the perspective of the practitioners themselves and not that of public health authorities or independent researchers. Naturopathy, Homeopathy, Chiropractic, and Midwifery: Overview of the Canadian Situation

Naturopathy The origins of naturopathy are difficult to pinpoint, since the approach incorporates belief systems that have evolved from ancient times in different parts of the world (Busse, Wilson, and Campbell 2008). The rise in the popularity of naturopathy in the industrialized world might be linked to the New Age movement, with which it shares many common characteristics – such as an eclectic and individualized approach to spirituality. On its website, the Canadian Association of Naturopathic Doctors (CAND) defines naturopathy as “a distinct primary health care system that blends modern scientific knowledge with traditional and natural forms of medicine” (CAND 2017c). According to this association, naturopathy encompasses the art and science of disease diagnosis, treatment, and prevention by means of natural therapies that combine botanical medicine, clinical nutrition, hydrotherapy, homeopathy, naturopathic manipulation, Chinese medicine, and acupuncture, as well as through the cultivation of a strong therapeutic relationship between the patient and practitioner. Naturopathy seeks to improve health and prevent disease by proposing new lifestyle habits and certain attitudinal changes. The goal is not to simply treat the disease but rather to detoxify and revitalize the body. A naturopathic approach to well-being encourages the value of individuals taking charge of

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their health to foster optimal well-being through natural and “environment friendly” means. Naturopathy treatments are chosen based on the “whole” patient, on the assumption that “disease affects the entire person, not just a specific organ or system” (CAND 2017a). Naturopathic doctors aim to treat the cause – not the symptoms – of any condition, and they take into account not only physical symptoms but also mental, emotional, genetic, environmental, social, spiritual, and other factors (CAND 2017a). According to the CAND, there are more than 2,400 naturopathic doctors in Canada (CAND 2017b). Five provinces (British Columbia, Alberta, Saskatchewan, Manitoba, and Ontario) regulate the practice of naturopaths. In these provinces, a licence to practise is thus required. In Nova Scotia, the Naturopathic Doctors Act of 2008 grants title protection for naturopathic doctors (CAND 2017b). The only teaching institutions accredited by the Council on Naturopathic Medical Education (CNME) in Canada are the Canadian College of Naturopathic Medicine (CCNM) in Ontario and the Boucher Institute of Naturopathic Medicine (BINM) in British Columbia. In jurisdictions where there is no regulation for the practice of naturopathy, various schools and organizations offer different courses. Some provide very minimal training, while others have a complete program that is similar to that offered by recognized institutions and include courses in biology, chemistry, and medicine, as well as traineeship and standardized exams.

Homeopathy Homeopathy is a common therapeutic approach often offered within the context of naturopathy (CAND 2017c), but it is often also offered by homeopathic clinicians. Homeopaths diagnose and treat diseases by administering homeopathic products (minuscule doses of a substance produced chemically or naturally that will result in particular symptom usually associated with the illness) or by recommending lifestyle changes (Human Resources and Skills Development Canada 2017c). Samuel Hahnemann (1755–1843), a German doctor and chemist, is the founder of this approach. Two principles form the backbone of homeopathy: the law of similars and the principle of high dilutions. The law of similars is based on the notion that “like cures like.” Attributed to Hippocrates, this principle suggests that a substance that provokes a group of symptoms in a healthy person can also heal a sick person who displays the same group of symptoms. The word “homeopathy” is derived from this principle, from the Greek words homeo (“similar”) and pathos (“illness or suffering”). An integral part of the homeopathic treatment process is therefore the choice of remedies based on symptoms rather than on the disease

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(Canadian Paediatric Society 2005). This approach is opposed to biomedicine, in which the aim is to “fight” diseases and eliminate symptoms (Ernst 2015a). Homeopathic theory also alleges that dilution of a remedy can boost its curative effects. Accordingly, the higher the number of dilutions (i.e., the less of the original substance is present in the dilution), the more powerful the remedy. In addition, after each dilution, the remedy is given a series of forceful strikes or shakes, called succussions, to “dynamize” the remedy that is to reveal the substance’s “hidden” power. This process of dynamization by succusions is considered essential for the product’s efficacy or “potency.” In homeopathy, serial dilutions (called potentisation) are often taken so far that by the time the last dilution is completed, no molecules of the original substance are likely to remain. Hahnemann created the centesimal or “C scale,” diluting a substance by a factor of 100 at each stage. Hahnemann advocated 30C dilutions for most purposes (i.e., dilution by a factor of 1,060). In Canada, all CAM products are regulated by the federal government (Andrews and Boon 2005). Since January 2004, homeopathic products approved in Canada have carried a drug identification number (Homeopathic Medicine Number, DIN-HM) issued by Health Canada’s Natural and Non-Prescription Health Products Directorate. The objective of this regulation, as stated on Health Canada’s website, is to “[assure] that all Canadians have ready access to a wide range of natural health products that are safe, effective, and of high quality” (Health Canada 2017; emphasis added). Nonetheless, many homeopathic products can be purchased over the counter without medical advice. Moreover, the training and professionalization of homeopaths varies greatly: some have no particular training while others have taken a four-year continuing education program, in Canada or elsewhere, leading to a diploma. The National United Professional Association of Trained Homeopaths (NUPATH) in Canada requires its members to have a minimum of standardized training before it issues certification and the title of Registered Homeopathic Practitioner, HD (R.Hom.) (NUPATH 2015). Several other professional homeopathic organizations exist across the country. It is difficult to assess the role of these various associations, because their membership prerequisites, definitions of their association’s role, and codes of ethics creates differences in practice. Indeed, the number of homeopaths in Canada is very difficult to estimate. Links between the various professional associations are not clear, and a practitioner could conceivably belong to several of these associations. In addition, homeopathy is generally practised as a complement to another health profession (Canadian Paediatric Society 2005). Finally, as of 1 April 2015, Ontario has become the first Canadian province to regulate the practice of homeopathy through the Ontario Homeopathy Act (2007).

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Chiropractic Chiropractic was developed in the late nineteenth century by D.D. Palmer, who set forth a new theory of disease that centred on lesions of the nervous system, called subluxations. Originally, chiropractic theory was related to the principle that most – if not all – illness resulted from lesions or dysfunctions of the joints (Busse, Morgan, and Campbell 2005). Chiropractors diagnose, treat, and prevent neuromusculoskeletal troubles linked to the spinal column, nervous system, pelvis, and other body joints by realigning the spine or by practising other corrective manipulations (Human Resources and Skills Development Canada 2017a). They treat health problems by natural methods – such as joint correction or manipulation – as well as by complementary therapies – such as electrotherapy, acupuncture, heat therapy, and massage therapy – that focus on the spinal column in particular (Human Resources and Skills Development Canada 2017a). The Canadian Chiropractic Association (CCA) represents the professional interests of Canadian chiropractors. According to this association, “chiropractic care is a drug-free, non-invasive treatment supporting the body’s musculoskeletal (MSK) system and associated neurological function, primarily by providing comprehensive, evidence-informed manual therapy” (CCA 2015b). The CCA reports that there are more than 8,400 licensed chiropractors practising in Canada. Chiropractic training requires at least two years’ undergraduate university study in science and a four- to five-year chiropractic program from an establishment accredited by the Accreditation Commission of the Council on Chiropractic Education; successful completion of the Canadian Chiropractic Examining Board and the provincial licensing body examinations are also required (Human Resources and Skills Development Canada 2017a). Two Canadian schools offer chiropractic training: the Canadian Memorial Chiropractic College (CMCC) in Toronto and the Université du Québec in TroisRivières, Quebec. To become a Doctor of Chiropractor (DC), candidates must pass exams set by the Canadian Chiropractic Examining Board, as well as those administered by provincial authorities (CCA 2015c). All Canadian provinces and the Yukon Territory have adopted laws regulating chiropractic. In each province, professional associations control the practice and issue licences to practice to practitioners who have completed the required training (CCA 2015c). In all provinces, chiropractic scope of practice includes making a diagnosis, ordering and interpreting X-rays, and spinal manipulation. In some provinces, chiropractors can also directly refer a patient to an appropriate medical specialist (Human Resources and Skills Development Canada 2017a).

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Midwifery Midwives are primary health care professionals who practice in a variety of settings (i.e., the home, community, hospitals, clinics, or health units). The Canadian Association of Midwives (2015b) defines the role of a midwife as follows: Midwives provide the complete course of low-risk prenatal, intrapartum and postnatal care, including physical examinations, screening and diagnostic tests, the assessment of risk and abnormal conditions, and the conduct of normal vaginal deliveries. Midwives work in collaboration with other health professionals and consult with or refer to medical specialists as appropriate. The midwifery model of care promotes normal birth, enables women to make informed choices, and provides continuity of care and support throughout the childbearing experience. Midwives attend births in hospitals, birth centres and at home.

Midwifery is based on respect for pregnancy and birth as normal physiological processes. Midwives promote the health of women, babies, and families, taking into account the social, emotional, cultural, and physical aspects of the maternity experience and women’s needs. Their work involves pre- and postbirth education and may include education on other aspects of reproductive health, parenting, or child care (CMRC 2017). According to their association website, Canadian midwives respect women’s right to make informed choices about all aspects of their care. By providing women with full, relevant, objective information in the context of a personal egalitarian relationship, midwives actively encourage this informed decision-making. Canadian midwives must ensure that they are up to date on the latest research related to maternity care issues and that they are able to evaluate the research critically and incorporate all relevant results into their practice (CMRC 2017). The midwife profession is regulated in most Canadian provinces and territories (except Newfoundland and Labrador, Prince Edward Island, New Brunswick, and Yukon). Although some provincial and territorial differences in legislation exist, the organization and practice of midwifery and the practice model that guides midwifery is the same for all Canadian provinces and territories where it is regulated (CMRC 2017). Becoming a midwife requires completion of an undergraduate university degree program in midwifery or its equivalent and a period of supervised practical training (Human Resources and Skills Development Canada 2017b). Midwifery education in Canada is offered at a university baccalaureate level without any specific admission requirements. Seven midwife training programs have been recognized in Canada, offered by universities in British Columbia,

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Ontario, Quebec, Manitoba, and Alberta (Canadian Association of Midwives 2015a). In Canada, in 2014, more than 1,200 midwives were registered with one of the provincial bodies (Canadian Association of Midwives 2014). Most Canadian midwives practise in the provinces of Ontario, British Columbia, and Quebec.

The Costs of CAM in Canada The costs for patients associated with use of these CAMs indicate that midwifery and chiropractic have become, at least partially, integrated in the mainstream biomedicine, while naturopathy and homeopathy remain at the margins. In all jurisdictions where midwifery is regulated, it is included in the publicly funded health care system: midwife services are offered for free to expectant women. In addition, despite the fact that chiropractic is not publicly funded, most health insurance plans cover chiropractic treatments (CCA 2015a). After the first visit, the average fee per consultation of a chiropractor is between forty and sixty dollars (Alberta College and Association of Chiropractors 2015). In contrast, consultations of naturopaths or homeopaths are not covered by any of the provincial health plans (CAND 2017d; Canadian Society of Homeopaths 2015). According to the CAND, a patient may pay between 35 and 250 dollars for a consultation with a naturopathic doctor, depending on the length of consultation; the CAND fee schedule is based on a rate of 125 to 180 dollars per hour (CAND 2017d). For homeopaths, a patient can expect to pay 150 dollars for a first consultation, and fees increase with practitioner experience (Canadian Society of Homeopaths 2015). Of note is the fact that if homeopathic consultation is offered by a physician (MD), which is sometimes the case in Canada, it is publicly funded. Most homeopathic remedies are also available over-thecounter in pharmacies at a relatively low cost. CAM, Vaccination, and Vaccine Hesitancy3 The influence of biomedical health providers’ recommendations on vaccine acceptance is undeniable (Williams 2014; Yaqub et al. 2014). However, the role of CAM practitioners in influencing their patients’ vaccination decision is less well understood (McMurtry et al. 2015). Because Canadians are increasingly seeking medical treatments by CAM practitioners, and because these practitioners are often associated with more negative attitudes towards vaccination, it is crucial to have a better understanding of their perspectives on vaccination (Bean and Catania 2013). Only then will the effect of these overlapping subcultures of hesitancy become clear.

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Vaccine Attitudes and Practices among CAM Users In international literature, the association between CAM use and non-vaccination of children and adults themselves has been frequently observed (Cassell et al. 2006; Gaudino and Robison 2012; Zuzak et al. 2008; Downey et al. 2010; Jones, Sciamanna, and Lehman 2010; Smith et al. 2011). Other studies have shown, however, that the association between alternative treatment and nonvaccination may be a result of non-vaccinating families selecting CAM practitioners rather than CAM practitioners advising against vaccination (Kriwy 2012; Salmon et al. 2005). CAM use has been associated with a negative attitude towards vaccination in several studies in Canada, as discussed by Guay, Dubé, and Laberge (chapter 6 in this volume). For example, in a vaccination study conducted in 2011, 16 per cent of parents agreed with the statement that the use of alternative practices could eliminate the need for vaccination (Ekos Research Associates Inc. 2011). As well, the results of two Canadian studies on the determinants of vaccine coverage showed that midwife-assisted birth was positively associated with the child having incomplete vaccine status (Zhang et al. 2008; Guay et al. 2009). For instance, in one of these studies, the likelihood to have an incomplete vaccine status at twenty-four months of age was seven times higher for infants whose birth was assisted by a midwife compared to birth assisted by physician (Guay et al. 2009). A questionnaire study conducted in 2010 with ninety-five parents of children aged sixteen years or younger who attended a naturopathic clinic in Ontario showed that only half of these parents stated that their children had received all recommended vaccines. Various studies showed that feeling pressured to vaccinate one’s child (by their family physician or paediatrician, in most cases) and considering the naturopath as the most trustworthy source of vaccination information are linked to the incomplete or non-vaccination of children (Busse, Walji, and Wilson 2011; Zhang et al. 2008). In 2002, a study reviewed medical files of 482 naturopathic clinic patients younger than eighteen years (average age = 6.5 years) at the Canadian College of Naturopathic Medicine in Toronto (Wilson, Busse, et al. 2005). Of the 316 files containing vaccination information, 86.7 per cent indicated that the child had received all the recommended vaccines, whereas 4.4 per cent reported partial vaccination, and 8.9 per cent indicated that the child had not received any vaccines. This study showed that young age, greater CAM use, and visiting CAM clinics for the purpose of seeking vaccination advice were associated with incomplete or non-vaccination (Wilson, Busse, et al. 2005). In a qualitative longitudinal study conducted with fifty-six mothers in ­Quebec, we found that many vaccine-hesitant mothers who decided to refuse

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or delay vaccination for their child were relying more or less heavily on CAM. Public health or governmental information was perceived by vaccine-hesitant mothers as “too pro,” whereas the critical information on anti-vaccination groups was perceived as “too anti.” In their quest for “balanced” information, some vaccine-hesitant mothers turned to CAM practitioners. Their recommendations were taken to be more credible than those of public health experts, nurses, or physicians, because CAM practitioners were seen as having nothing to gain or lose when talking about vaccination (Dubé et al. 2016), as illustrated by this quote from a thirty-one year old vaccine-hesitant mother: The chiropractor won’t get anything. I do not really see what advantage people would have to promote ideas against vaccination except for their personal opinion and the fact that they really believe it, they do not get any economic advantage. (146)4

CAM and Vaccination: Practitioners’ Positions Some Canadian studies directly questioned CAM practitioners on their knowledge, attitudes, and practices with regard to vaccination. Most of these studies were conducted with chiropractors, and their results generally indicate that many CAM professionals are hesitant about vaccination. In this section, we will briefly present the official positions on vaccination, if any, taken by Canadian CAM associations, as well as the results of relevant studies conducted with Canadian naturopaths, homeopaths, chiropractors, and midwives.

Naturopathy and Vaccination So in my own view of life, I think we are over-doing things … while nature is doing things so well … I have no problem not to vaccinate my daughter, because I have this personal view about natural health. In my opinion, the more we intervene, the less good things happen. So I think that my daughter has her own antibodies, and she lives perfectly like that. – Twenty-eight-year-old vaccine-hesitant mother who refused all vaccines for her child

Little information on vaccination is presented on the CAND website, and the limited information that was once available has since been removed. For example, a 2012 position paper on the flu vaccine stated that Vaccinations prevent the body from naturally responding to external pathogens like viruses and bacteria. Individuals, who regularly maintain a strong healthy immune system will protect themselves from any adverse effects of the flu,

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will build permanent immunity and will decrease the potential for developing unknown side effects from long term exposure to vaccinations. (CAND 2004)

Before outlining measures to prevent the flu based on diet and good hygiene, this statement concluded that The flu vaccination was developed by the allopathic health care system to decrease the risk of contracting the influenza virus. However, the best way of preventing any flu or complications from any flu is through prevention. The main focus of prevention needs to be on daily healthy habits that ensure an optimum immune system and overall health. A strong immune system is the most effective prevention strategy against the flu or any other virus. (CAND 2004)5

Four Canadian studies with naturopathy students showed that the majority of naturopathy students were vaccine hesitant (Wilson et al. 2005a; Wilson et al. 2004; Busse, Wilson, and Campbell 2008; McMurtry et al. 2015). In the first study, the 525 students in the four-year naturopathy program at the Canadian College of Naturopathic Medicine received a questionnaire on their vaccination knowledge and attitudes (Wilson et al. 2004). Of the 312 students who responded, only 12.8 per cent stated they intended to recommend that their patients receive all the recommended vaccines, while 74.4 per cent would recommend only certain vaccines. The study results also showed that the students’ intention to recommend all vaccines to patients and their confidence in public health and conventional medicine decreased with the number of study years completed (Wilson et al. 2004). A substudy, focused on final-year students only (n = 97), found similar results even after specific educational interventions to promote vaccination were provided (Wilson et al. 2005b). Finally, eleven focus groups were conducted with sixty-two medical, chiropractic, and naturopathic students (Busse, Wilson, and Campbell 2008; McMurtry et al. 2015). The preliminary analysis of the focus groups with chiropractic and naturopathic students illustrated that many students were concerned about long-term effects of vaccines, had fears that infant immune systems could be overloaded by multiple vaccines, distrusted risk and benefit data provided by vaccine manufacturers, had concerns about some vaccine ingredients, and believed that certain holistic approaches (e.g., homeopathy) could provide similar or better protection than vaccination (Busse, Wilson, and Campbell 2008). As discussed by Bramadat, O’Doherty, and Brunk in this volume (chapters 1, 2, and 3), these concerns reflect broader anxieties among vaccine-hesitant individuals. The final analysis of the focus groups has illustrated how chiropractic and naturopathic students’ perspectives about vaccination were developed,

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as well as how they compare with those of medical students (McMurtry et al. 2015). Findings illustrate that students generally began their professional training with an open mind about vaccination and that both formal education and informal socialization had a major impact on students’ beliefs, with most students in early years of professional training uncritically accepting the vaccination views of senior or respected biomedical professionals. Finally, the majority of students agreed on the importance of patient education and biomedical evidence surrounding vaccination. However, there were important differences in the emphasis put on other elements: while medical students emphasized the larger scale public health effects of vaccination, the chiropractic and naturopathy students “strongly advocated healthy lifestyle choices, individual choice, and other ‘whole person’ factors” (McMurtry et al. 2015, 1299).

Homeopathy and Vaccination I have consulted a homeopath because of my child’s colic, and we have talked about vaccination and this is why I’ve choose to delay vaccination. [Interviewer] What was the homeopath’s advice regarding vaccination? She gave me three choices: I could delay vaccination, or I could give homeopathic vaccines during five years, or I could give my child some of the regular vaccines and use homeopathic vaccines for others. I had some choices … she does not give any vaccines … you know, her children are not vaccinated at all … She’s not against vaccines, but … – Thirty-five-year-old vaccine-hesitant mother I consulted the homeopath because I wanted to have a kit to prepare my daughter for the first vaccines. It’s a homeopathic kit to boost the immune system before it receives the viral charge in vaccines. [Interviewer] Ok, so there are homeopathic products to prepare for vaccination? Yes, it’s pretty common … The homeopath, she was clearly against vaccines. Her discourse was quite clear … she has a strong stance against vaccines. – Twenty-eight-year-old vaccine-hesitant mother

Despite the fact that the founder of homeopathy was strongly in favour of vaccination (Boyer et al. 2006), many studies carried out in different countries have illustrated that homeopaths advise their patients not to be vaccinated.6 However, a study of Canadian homeopaths has yet to be conducted. Homeopaths may recommend what they call homeopathic vaccines, or “nosodes,” which are highly diluted infectious agents administered orally. These

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nosodes are constituted from biological matter such as pus, diseased tissue, blood, saliva, or bacilli from excrement (Pray 1996). Some homeopaths recommend these homeopathic vaccines as an alternative to biomedical vaccines as a way of preventing infectious diseases in children or travellers (Birch 2015). It is also interesting to note that some of these products, such as Influenzinum, used to prevent influenza, are licensed under Health Canada’s Natural Health Products Regulation. This licensing approach has been sharply criticized by experts because it gives an “aura of efficacy” to products that have shown no scientific evidence of effectiveness in treating or preventing any medical conditions (Picard 2015; Weeks 2015a, 2015b). As of June 2013, Health Canada has added a mandatory warning to the labelling standards of nosodes: now the labels must state that “This product is neither a vaccine nor an alternative to vaccination. This product has not been proven to prevent infection. Health Canada does not recommend its use in children and advises that your child receive all routine vaccinations” (Health Canada 2015) Despite this new standard, practitioners may continue to prescribe these products as alternatives to vaccination, as these prescribing rights are outside the jurisdiction of Health Canada to enforce. According to advocates, homeopathic vaccines are “natural” and “non-toxic,” and they do not cause any adverse effects. They encourage the body to produce a strong immune response and to be protected against disease. How Successful Are Homeopathic Immunizations during Epidemic Outbreaks? Homeopathy has been used successfully for hundreds of years in many different countries during epidemic outbreaks. For example, homeopathic immunizations have recently been used successfully on millions of people in Cuba to prevent the tropical disease leptospirosis. In Brazil, homeopathic immunizations have been used successfully on thousands of people to prevent meningitis (McLeod 2014). It is important to note that there is insufficient methodological information on the studies from which these data were extracted, which limits the possibility to refute or prove these claims on a scientific basis. In addition, the references provided to support these claims are not peer-reviewed publications; they are, rather, websites promoting homeopathic immunization, papers in homeopathic magazines, and papers published in the early 1900s that are not readily available. Despite the appearance of scientific rigour given to this information, the quality of homeopathic clinical trials does not compare favourably with those in biomedicine (Canadian Paediatric Society 2005). As Bramadat suggests in chapter 1 in this book, most assumptions in homeopathic theory (such as the notion that the absence of an active ingredient in a homeopathic remedy might have a greater

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effect than its presence) are akin to faith assertions and contradict well-established evidence gathered from microbiological research and practice. In addition, no reliable scientific evidence has emerged in biomedicine that demonstrates the effectiveness of homeopathic products in preventing infectious diseases (NHMRC 2015a). Moreover, cases of individuals having contracted infectious diseases following homeopathic “vaccination” have been reported in some scientific journals (Ernst 2001). In fact, the potential that homeopathy might one day be granted scientific legitimacy was nullified by a powerful meta-study published in The Lancet in 2005 (Shang et al. 2005). This was again reiterated in a review by the Australian National Health and Medical Research Council (NHMRC) of the evidence regarding the effectiveness of homeopathy as a treatment for any clinical condition in humans. In it assessment of the evidence of the effectiveness of homeopathy, the NHMRC concluded that “there are no health conditions for which there is reliable evidence that homeopathy is effective” (NHMRC 2015a, 6). ­Furthermore, the NHMRC stated that “homeopathy should not be used to treat health conditions that are chronic, serious, or could become serious. People who choose homeopathy may put their health at risk if they reject or delay treatments for which there is good evidence for safety and effectiveness”(NHMRC 2015b).

Chiropractic and Vaccination I do not vaccinate my children and I’m sure that I have made the right decision. [Interviewer] And do you talk about vaccines with your patients? Yes, as I do for other things like breastfeeding. I give them some good references to studies, some information that has influenced my own decision about vaccination. I don’t recommend against vaccination, I think this is a personal decision. I gave them information in order that they could make an informed decision. – Chiropractor and mother of three unvaccinated children

Chiropractic literature contains many arguments against vaccination. Vaccination is frequently described as dangerous and ineffective (Ernst 2001, 2011). For example, the International Chiropractic Pediatric Association website presents mainly the risks of vaccination and offers several links to anti-vaccine websites (http://icpa4kids.org/). In contrast, the Canadian Chiropractic Association’s (CCA) does not officially take a stance discouraging immunizations. In fact, the CCA (2015d) states their position on vaccination as follows: Vaccination is a well-established and widely mandated public health policy and the Canadian Chiropractic Association supports public health promotion and

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­ revention strategies that encourage physical and mental health and well-being. p The CCA accepts vaccination as a cost-effective and clinically efficient public health preventative procedure for certain viral and microbial diseases, as demonstrated by the scientific community. The public responsibility for vaccination and immunization is neither within the chiropractic scope of practice, nor a chiropractic specific issue. Public health programming and literature provide appropriate sources of information for patient education regarding vaccination and immunization.

Despite the favourable position expressed by the CCA, vaccination remains a topic of debate among chiropractors, and a fairly vocal minority of them express strong anti-vaccine positions (Busse et al. 2002; Gleberzon et al. 2013). Campbell, Busse, and Injeyan (2000) and Busse, Morgan, and Campbell (2005) have identified several arguments anti-vaccination chiropractors use frequently: vaccination is ineffective, since vaccine-preventable disease arises even in vaccinated communities, and a reduction in these diseases is due to improved living and hygiene conditions; vaccination is unnecessary and can even be dangerous; and disagreement about vaccine utility and even opposition to vaccination can be found in the medical community. This type of discourse is found in (non-peer-reviewed) chiropractic magazine articles, on chiropractors’ websites, and in paid advertising (Busse, Morgan, and Campbell 2005). Moreover, studies conducted among Canadian chiropractors also reveal that many professionals hesitate about or oppose vaccination. A questionnaire study was conducted in 2000 with 467 of the 621 students at the Canadian Memorial Chiropractic College (CMCC) (Busse et al. 2002). The study results showed that some first-year students had negative attitudes towards vaccination and that this proportion increased with years of training. For example, 24 per cent and 17 per cent of fourth-year students agreed with the statements, respectively, that “There is little scientific proof that immunization prevents infectious disease” and “Vaccines have not substantially changed the incidence of major infectious disease,” compared with 2.7and 6.2 per cent of first-year students. Although the cross-­sectional methods do not allow definitive conclusions to be drawn about the impact of training on the development of negative attitudes in chiropractic students, the results show a worrying trend (Busse et al. 2002) that resembles the trend among naturopathic students (Wilson et al. 2004). In 2011, a similar study was again conducted among CMCC students with 368 of the 760 students and found fundamentally different results (Lameris et al. 2013). In Lameris and colleagues’ (2013) study, between 84 per cent and 90 per cent of chiropractic students in various years of study expressed positive attitudes towards vaccination, whereas in Busse and colleagues’ (2002) study, the highest positive score was 73 per cent. Furthermore, whereas Busse’s study indicated that fourth year

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students had more negative attitudes towards vaccination than first year students, Lameris’s study showed generally pro-vaccination attitudes among students in all four years of training. It is not possible to draw conclusions on a trend towards more favourable attitudes with respect to vaccination among chiropractic students from these two cross-sectional surveys. In addition, while the majority of chiropractic students responded to Busse’s survey, fewer than half of the students in Lameris’s study completed the questionnaire. Indeed, a response bias towards students with more positive attitudes with respect to vaccination cannot be ruled out in Lameris’s study (Gleberzon et al. 2013). Another questionnaire was mailed to the 643 chiropractors in Alberta, of whom 503 responded. The fifty-five-item questionnaire sought to describe the chiropractors’ vaccination practices and attitudes (Russell et al. 2004; Page et al. 2006; Medd and Russell 2009; Russell, Verhoef, and Injeyan 2005). The results showed that 45 per cent of chiropractors indicated that they discussed vaccination regularly with their patients (10 per cent every week and 35 per cent every month). Moreover, this group had more negative attitudes towards vaccination than the chiropractors who discussed vaccination with patients less frequently. The most common vaccine-related practices among chiropractors were reminding patients that vaccination is a choice (70 per cent of chiropractors indicated they had done so in the six months prior to the survey) and answering questions or providing information on vaccination risks (67.8 per cent). Finally, despite the fact that such a recommendation is against the CCA’s official position, 27.2 per cent of respondents stated that they had recommending patients not to be vaccinated or not to have their children vaccinated. However, a similar proportion of respondents stated that they were recommending vaccination (Russell et al. 2004). Slightly more than 60 per cent of chiropractors expressed some openness to working with public health doctors or nurses, and their main interest was in obtaining vaccination information from public health practitioners. Interviews were also conducted with fourteen questionnaire respondents to explore their approach to vaccination with patients (Page et al. 2006). The results of this study showed that the vaccination discussion was initiated mostly by patients, sometimes following indirect communication (from waiting room pamphlets or articles). Only one of the chiropractors recommended vaccination to patients; the others stated that they provided information to allow patients to make an informed choice. Some chiropractors had an explicit agenda, stating they wanted to tell patients about “the other side” of vaccination (Page et al. 2006). Additional analyses examined the links between chiropractors’ vaccine status, their children’s vaccine status, and their recommendations to patients (Medd and

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Russell 2009). Only respondents with at least one child were included in this study (n = 325). Among chiropractors with only one child (n = 63), 16 per cent stated that their child had received all the recommended vaccines; 57 per cent, only certain vaccines; and 27 per cent, no vaccines. For respondents with more than one child, the responses on vaccine status for the eldest child were distributed about equally, with one-third of respondents in each category. Interestingly, nearly onequarter of chiropractors whose first child had received all the recommended vaccines stated having decided otherwise for their younger child(ren). Only 22 per cent of chiropractors indicated that they recommend patients’ children be vaccinated, which is much lower than in studies conducted with Canadian physicians and paediatricians, where the overwhelming majority recommends to parents to have their children vaccinated (Dubé et al. 2012). In 2010, a survey was conducted among a random sample of 740 Canadian chiropractors (response rate of 68 per cent) and included questions on vaccination attitudes and behaviours (Puhl et al. 2014; McGregor et al. 2014). Results of this study indicate a much lower proportion of chiropractors who advise parents against vaccinating their children than in the study conducted in Alberta (Russell et al. 2004) (7 per cent compared to 27 per cent). The most common responses were that chiropractors advise parents to talk to a physician or nurse for information about childhood vaccines (39 per cent) or give pros and cons of childhood vaccination (38 per cent). This study also suggests that a majority of Canadian chiropractors agreed that “there is good scientific evidence to support vaccination theory” and “that vaccination has improved public health” (Puhl et al. 2014, 715). This study has also illustrated that attitudes towards vaccination are significantly associated with the ideological foundation of the chiropractic schools where respondents receive their formal chiropractic education; negative attitudes about vaccination are more likely to be found among graduates from conservative U.S. schools (Puhl et al. 2014; McGregor et al. 2014).

Midwifery and Vaccination She [the midwife] just let me make my own mind up. She said, it’s okay if you do not vaccinate, it was quick, it took thirty seconds, that’s all. – Thirty-three-year-old vaccine-unfavourable mother

I have issues with people who think that everything is black or white. That’s why I’ve appreciated the midwife’s approach. Even if I knew that she was against vaccination, that her children were not vaccinated, she still gave me information … uh … neutral.

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When I receive information that is too much pro-vaccination or too much against vaccination, I don’t really trust it. I think life is more grey than black or white. – Twenty-eight-year-old vaccine-hesitant mother who has refused all vaccines for her child

Let us now consider the relationship between midwifery and vaccinations. We have assessed two Canadian studies on this issue. In 2002, an Ontario study (Lee et al. 2005) examined midwives’ and midwifery students’ vaccination beliefs and practices. In this study, influenza vaccine coverage among Ontario midwives was 27 per cent, compared with 60 per cent for health workers overall during the same season. Among the practising and student midwives, 56 per cent indicated that they were in favour of the influenza vaccination, while 34 per cent remained neutral. Moreover, 24 per cent of midwives stated that they recommended vaccination to their clients, while 64 per cent remained neutral to this statement. Qualitative research was conducted with Quebec midwives to describe their vaccination practices, attitudes, and beliefs (Dubé, Vivion, Valderrama, et al. 2013; Dubé, Vivion, Sauvageau, et al. 2013). Twenty-five interviews (with seventeen midwives and eight student midwives) were conducted in 2010. This study highlighted the importance of the midwife philosophy in guiding the entire practice. Informed choice is a key principle of modern midwifery, and midwives approach many health promotion issues, including vaccination, on the basis of this principle. While Quebec nurses and doctors must recommend vaccination to their patients (CMPA 2008; Durand, Allard, and Thibault 2007), midwives interviewed in this study sought to play the role of an information provider instead, presenting the pros and cons of vaccination to parents. The majority of midwives thus stated that they provided both government documentation, such as the From Tiny Tot to Toddler guide (https://www.inspq.qc.ca/node/1942), and alternative documentation, such as naturopathic materials (Arsenault 2004, 2009). While most midwives recognized the advantages of vaccines – for example, their effectiveness in disease prevention and the fact that they are free – they also emphasized several arguments against vaccination, namely in connection with the vaccination schedule, thought (by some) to begin too early in an infant’s life, and in connection with combined vaccines, which limit parents’ opportunities to pick and choose. Of note is the fact that all interviewed midwives stated that their personal opinion on vaccination did not in any way influence their discussions with patients. Finally, several mentioned the difficulty they had in finding nuanced information on vaccination. A second quantitative study component was conducted with practising and student

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midwives. Despite the low response rate (46 of 131) and the difficulty some midwives expressed regarding their ability to complete the questionnaire, this study confirmed that vaccination appears to be a topic of debate among midwives, and some respondents mentioned the need for training on the subject (Vivion et al. 2011). Conclusions One way or the other, when my homeopath tells me that my daughter is going to have cancer, because it looks like we are going to get cancer from being vaccinated, or when the government tells me that people are still dying because they weren’t vaccinated … all that, for me, one side or the other, I really have a problem with that and that’s why I haven’t made a decision yet, I have a hard time accepting that information. – Twenty-eight-year-old vaccine-hesitant mother

The data presented in this chapter indicate that many CAM practices are going through a process of professionalization (Fadlon 2005) to move from “the margins to the mainstream in health care” (Kelner et al. 2006, 2617). As Kelner and his colleagues (2006) have suggested, the process of CAM professionalization is based on four main strategies: improving educational programs, elevating standards of practice, developing more peer-reviewed research, and increasing cohesion among practitioners. As we have suggested above, chiropractors and midwives have successfully integrated into the “official” Canadian health care system, and their ever-increasing presence comes with corresponding influence. A recent content analysis of the websites of major Canadian chiropractic associations, colleges, and commercial clinics shows that “chiropractic’s shift from the periphery to the mainstream” has resulted in a discourse where chiropractic is presented as both an “evidencebased practice in line with the conventions of traditional science” and, at the same time, “an alternative option that embraces a natural approach” (Shelley, Clark, and Caulfield 2015, 20). Despite the fact that naturopaths and homeopaths have still not achieved the level of integration within biomedicine chiropractic and midwifery have, the regulation of the homeopathic practice in Ontario and Health Canada’s licensing of homeopathic products certainly gives an impression of government approval. These decisions have been met with criticism among vaccine advocates (MacDonald et al. 2011; Ernst 2015b). Given the lack of evidence to support the effectiveness of homeopathic products (Shang et al. 2005; NHMRC 2015a), critics contend that the licensing and regulation processes gives ordinary

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people mixed messages, implying that homeopathy is as effective as other biomedical treatments such as vaccines. We have also shown that a significant proportion of CAM professionals in Canada hesitate about or oppose vaccination. Of course, some biomedical professionals – in particular, nurses – might resemble CAM colleagues in this regard, at least with respect to vaccines for influenza (Dubé, Defay et al. 2011; Dionne et al. 2001), but doctors and especially paediatricians are for the most part strong defenders of vaccination (Daley et al. 2006; Posfay-Barbe et al. 2005; Kempe et al. 2009; Dubé, Gilca et al. 2011). From a biomedical standpoint, the CAM professionals’ positions on vaccination can be worrying, as vaccination is demonstrably one of the most effective measures for preventing death and complications from vaccine-preventable diseases. Indeed, vaccine hesitancy and refusal can be challenging for biomedical professionals who tend to view patients’ fears and concerns as irrational, superstitious, ill-informed, or driven by anti-vaccine movements (Flanagan-Klygis, Sharp, and Frader 2005; Opel et al. 2012; Leib, Liberatos, and Edwards 2011). Some studies have highlighted that parents find it difficult to have an open discussion about vaccination with their physician and report feeling alienated when vaccines are discussed (Opel et al. 2012). In contrast, discussion about vaccination with alternative medicine practitioners, such as naturopaths, was perceived to be more in line with what the parents perceived to be an ideal consultation for their children than was the case for consultations with physicians (Busse, Walji, and Wilson 2011; Dubé, Vivion, Sauvageau, et al. 2013). As discussed in this chapter, and highlighted in other studies as well (Bean and Catania 2013; McMurtry et al. 2015), CAM and biomedical professionals’ perspectives on vaccination are for the most part developed through socio-professional normative influences that impact vaccination behaviours, beliefs regarding health and prevention, and trust in different sources of information about vaccines. The studies reviewed in this chapter also indicate that patients who consult CAM professionals often had significantly more negative attitudes towards vaccination than one would find in the general population. In truth, the vaccination information supplied by biomedical and by CAM professionals is often incompatible if not entirely contradictory, and the uninitiated may find it difficult to use such information to make an informed decision (Leask, Braunack-Mayer, and Kerridge 2011; Dubé, Vivion, Sauvageau, et al. 2013). While the available research suggests that use of CAM is clearly linked with decreased acceptance of vaccines, other factors such as social norms, risk perceptions, religious assumptions, and accessibility to services should also be considered in understanding the phenomenon of vaccine hesitancy.

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NOTES 1 Generally, the term “complementary” refers to situations in which non-orthodox approaches are used conjointly with conventional medicine, whereas the term “alternative” is understood to mean the use of non-orthodox approaches alone, without recourse to conventional medicine. 2 In Canada, health products are regulated by the federal government, while health care practices are regulated provincially. Health care in Canada is largely publicly provided, but many private sectors, such as CAM, are expanding to meet new demands. The practice of CAM modalities is regulated individually by each Canadian jurisdiction, creating diversity with respect to who is regulated and how. CAM practitioners in unregulated areas of Canada can act freely as long as they do not break any other laws (Andrews and Boon 2005). Indeed, contrary to biomedicine, which is publicly funded and universal, most Canadians pay for services from CAM practitioners and for CAM products. 3 This section is based on a literature review conducted using the PubMed database on 19 September 2012, updated on 16 March 2015. Different keywords were used to identify studies on the vaccination knowledge, attitudes, and practices of CAM users and practitioners, with a particular focus on Canadian studies. 4 We have introduced citations from mothers that were interviewed in a qualitative longitudinal study done in Quebec in 2011–12. This study was funded by the Canadian Institute of Health Research (MOP-115012). More information regarding the methodology and results can be found in Dubé et al. (2016). 5 As of March 2015, this position statement is no longer available on the CAND website. 6 See Ernst (2001) for a review of these studies.

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Daley, M.F, N. Liddon, L.A. Crane, B.L. Beaty, J. Barrow, C. Babbel, L.E. Markowitz, E.F. Dunne, S. Stokley, L.M. Dickinson, et al. 2006. “A National Survey of Pediatrician Knowledge and Attitudes Regarding Human Papillomavirus Vaccination.” Pediatrics 118 (6): 2280–9. http://dx.doi.org/10.1542/peds.2006-1946. Dionne, M., N. Boulianne, B. Duval, F. Lavoie, N. Laflamme, J. Carsley, L. Valiquette, S. Gagnon, L. Rochette, and G. De Serres. 2001. “Manque de conviction face à la vaccination chez certains vaccinateurs québécois.” Revue canadienne de santé publique 92 (2): 100–4. Downey, L., P.T. Tyree, C.E. Huebner, and W.E. Lafferty. 2010. “Pediatric Vaccination and Vaccine-Preventable Disease Acquisition: Associations with Care by Complementary and Alternative Medicine Providers.” Maternal and Child Health Journal 14 (6): 922–30. http://dx.doi.org/10.1007/s10995-009-0519-5. Dubé, E., F. Defay, M. Kiely, C. Sauvageau, V. Gilca, M. Guay, and N. Boulianne. 2011. Connaissances, attitudes et pratiques d’infirmiers(ères), pédiatres et omnipraticiens québécois sur la grippe A(H1N1) et la grippe saisonnière. Quebec, Institut national de santé publique du Québec et ministère de la Santé et des Services sociaux. Dubé, E., V. Gilca, C. Sauvageau, J.A. Bettinger, F.D. Boucher, S. McNeil, I. Gemmill, F. Lavoie, M. Ouakki, and N. Boulianne. 2012. “Clinicians’ Opinions on New Vaccination Programs Implementation.” Vaccine 30 (31): 4632–7. http://dx.doi. org/10.1016/j.vaccine.2012.04.100. Dubé, E., V. Gilca, C. Sauvageau, R. Bradet, F. Lavoie, N. Boulianne, F.D. Boucher, J.A. Bettinger, S. McNeil, and I. Gemmill. 2011. “Acute Otitis Media and Its Prevention by Immunization: A Survey of Canadian Paediatricians’ Knowledge, Attitudes and Beliefs.” Human Vaccines 7 (4): 429–35. http://dx.doi.org/10.4161/hv.7.4.14141. Dubé, E., M. Vivion, C. Sauvageau, A. Gagneur, R. Gagnon, and M. Guay. 2013. “How Do Midwives and Physicians Discuss Childhood Vaccination with Parents?” Journal of Clinical Medicine 2 (4): 242–59. http://dx.doi.org/10.3390/jcm2040242. – 2016. “‘Nature Does Things Well, Why Should We Interfere?’ Vaccine Hesitancy among Mothers.” Qualitative Health Research 26 (3): 411–25. Dubé, E., M. Vivion, A. Valderrama, and C. Sauvageau. 2013. “Attitudes et croyances des sages-femmes québécoises sur la vaccination.” [“Knowledge and attitudes toward vaccination among midwives in Quebec.”] Santé Publique 25 (1): 35–43. Durand, S., M. Allard, and C. Thibault. 2007. Protéger la population par la vaccination: une contribution essentielle de l’infirmière. Montreal: Ordre des infirmières et infirmiers du Québec. Ekos Research Associates Inc. 2011. Survey of Parents on Key Issues Related to Immunization. Ottawa: Public Health Agency of Canada. Ernst, E. 2001. “Rise in Popularity of Complementary and Alternative Medicine: Reasons and Consequences for Vaccination.” Vaccine 20 (Suppl 1): S90–3. http:// dx.doi.org/10.1016/S0264-410X(01)00290-0.

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Kriwy, P. 2012. “Similarity of Parents and Physicians in the Decision to Vaccinate Children against Measles, Mumps and Rubella.” International Journal of Public Health 57 (2): 333–40. http://dx.doi.org/10.1007/s00038-011-0326-9. Lameris, M., C. Schmidt, B. Gleberzon, and J. Ogrady. 2013. “Attitudes toward Vaccination: A Cross-Sectional Survey of Students at the Canadian Memorial Chiropractic College.” Journal of the Canadian Chiropractic Association 57 (3): 214–20. Larson, H., and W. Schulz. 2015. The State of Vaccine Confidence. London: The Vaccine Confidence Project / London School of Hygiene & Tropical Medicine. http://www. vaccineconfidence.org/The-State-of-Vaccine-Confidence-2015.pdf. Leask, J., A. Braunack-Mayer, and I. Kerridge. 2011. “Consent and Public Engagement in an Era of Expanded Childhood Immunisation.” Journal of Paediatrics and Child Health 47 (9): 603–7. http://dx.doi.org/10.1111/j.1440-1754.2011.02160.x. Lee, T., R. Saskin, M. McArthur, and A. McGeer. 2005. “Beliefs and Practices of Ontario Midwives about Influenza Immunization.” Vaccine 23 (13): 1574–8. http:// dx.doi.org/10.1016/j.vaccine.2004.09.024. Leib, S., P. Liberatos, and K. Edwards. 2011. “Pediatricians’ Experience with and Response to Parental Vaccine Safety Concerns and Vaccine Refusals: A Survey of Connecticut Pediatricians.” Public Health Reports 126 (Suppl 2): 13–23. MacDonald, N., S. MacLeod, M.B. Stanbrook, P.C. Hébert, K. Flegel, and D. Rosenfield. 2011. “No Regulatory Double Standard for Natural Health Products.” Canadian Medical Association Journal 183 (18): 2079. http://dx.doi.org/10.1503/ cmaj.111739. Massé, R. 1995. Culture et santé publique. Montreal: Gaëtan Morin éditeur. McGregor, M., A.A. Puhl, C. Reinhart, H.S. Injeyan, and D. Soave. 2014. “Differentiating Intraprofessional Attitudes toward Paradigms in Health Care Delivery among Chiropractic Factions: Results from a Randomly Sampled Survey.” BMC Complementary and Alternative Medicine 14 (1): 51. http://dx.doi.org/ 10.1186/1472-6882-14-51. McLeod, S. 2014. “About Homeopathic Nosodes / Homeoprophylaxis.” Little Mountain Homeopathy. 19 June. http://www.littlemountainhomeopathy.com/vaccinealternatives. McMurtry, A., K. Wilson, C. Clarkin, R. Walji, B.C. Kilian, C.C. Kilian, L. Lohfeld, B. Alolabi, C. Hagino, and J.W. Busse. 2015. “The Development of Vaccination Perspectives among Chiropractic, Naturopathic and Medical Students: A Case Study of Professional Enculturation.” Advances in Health Sciences Education: Theory and Practice 20 (5): 1291–302. Medd, E.A., and M.L. Russell. 2009. “Personal and Professional Immunization Behavior among Alberta Chiropractors: A Secondary Analysis of Cross-Sectional Survey Data.” Journal of Manipulative and Physiological Therapeutics 32 (6): 448–52. http://dx.doi.org/10.1016/j.jmpt.2009.06.006

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National Center for Complementary and Integrative Health (NIH). 2016. “Complementary, Alternative, or Integrative Health: What’s In a Name?” National Center for Complementary and Integrative Health. June. https://nccih.nih.gov/health/ whatiscam. National Health and Medical Research Council (NHMRC). 2015a. NHMRC Information Paper: Evidence on Effectiveness of Homeopathy for Treating Health Conditions. Canberra: National Health and Medical Research Council. – 2015b. “NHMRC Statement: Statement on Homeopathy.” Australian Government – National Health and Medical Research Council. March. https://www.nhmrc.gov.au/_ files_nhmrc/publications/attachments/cam02_nhmrc_statement_homeopathy.pdf?. National United Professional Association of Trained Homeopaths (NUPATH). 2015. NUPATH. Accessed 4 April 2015, http://www.nupath.org. Ning, A.M. 2013. “How ‘Alternative’ is CAM? Rethinking Conventional Dichotomies between Biomedicine and Complementary/Alternative Medicine.” Health 17 (2): 135–58. http://dx.doi.org/10.1177/1363459312447252. Opel, D.J., J.D. Robinson, J. Heritage, C. Korfiatis, J.A. Taylor, and R. Mangione-Smith. 2012. “Characterizing Providers’ Immunization Communication Practices during Health Supervision Visits with Vaccine-Hesitant Parents: A Pilot Study.” Vaccine 30 (7): 1269–75. http://dx.doi.org/10.1016/j.vaccine.2011.12.129. Page, S.A., M.L. Russell, M.J. Verhoef, and H.S. Injeyan. 2006. “Immunization and the Chiropractor-Patient Interaction: A Western Canadian Study.” Journal of Manipulative and Physiological Therapeutics 29 (2): 156–61. http://dx.doi. org/10.1016/j.jmpt.2005.12.005. Park, J. 2005. “Use of Alternative Health Care.” Health Reports 16 (2): 39–42. Pélissier-Simard, L., and M. Xhignesse. 2008. “Les approches complémentaires en santé.” Le Médecin du Québec 43 (1): 23–30. Picard, A. 2015. “We’re Aiding and Abetting Homeopathic Quackery.” Globe and Mail. 31 March. Posfay-Barbe, K.M., U. Heininger, C. Aebi, D. Desgrandchamps, B. Vaudaux, and C.A. Siegrist. 2005. “How Do Physicians Immunize Their Own Children? Differences among Pediatricians and Nonpediatricians.” Pediatrics 116 (5): 623–33. http:// dx.doi.org/10.1542/peds.2005-0885. Pray, W.S. 1996. “The Challenge to Professionalism Presented by Homeopathy.” American Journal of Pharmaceutical Education 60 (2): 198–204. Puhl, A.A., C.J. Reinhart, J.B. Doan, M. McGregor, and H.S. Injeyan. 2014. “Relationship between Chiropractic Teaching Institutions and Practice Characteristics among Canadian Doctors of Chiropractic: A Random Sample Survey.” Journal of Manipulative and Physiological Therapeutics 37 (9): 709–18. http://dx.doi.org/10.1016/j.jmpt.2014.09.005.

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Russell, M.L., H.S. Injeyan, M.J. Verhoef, and M. Eliasziw. 2004. “Beliefs and Behaviours: Understanding Chiropractors and Immunization.” Vaccine 23 (3): 372–9. http://dx.doi.org/10.1016/j.vaccine.2004.05.027. Russell, M. L., M.J. Verhoef, and H.S. Injeyan. 2005. “Are Chiropractors Interested in Participating in Immunization Awareness and Promotion Activities?” Revue canadienne de santé publique 96 (3): 194–6. Salmon, D.A., L.H. Moulton, S.B. Omer, M.P. DeHart, S. Stokley, and N.A. Halsey. 2005. “Factors Associated with Refusal of Childhood Vaccines among Parents of School-Aged Children: A Case-Control Study.” Archives of Pediatrics & Adolescent Medicine 159 (5): 470–6. http://dx.doi.org/10.1001/archpedi.159.5.470. Shang, A., K. Huwiler-Muntener, L. Nartey, P. Juni, S. Dorig, J.A. Sterne, D. Pewsner, and M. Egger. 2005. “Are the Clinical Effects of Homoeopathy Placebo Effects? Comparative Study of Placebo-Controlled Trials of Homoeopathy and Allopathy.” The Lancet 366 (9487): 726–32. http://dx.doi.org/10.1016/S01406736(05)67177-2. Shelley, J., M. Clark, and T. Caulfield. 2015. “The Face of Chiropractic: EvidenceBased?” Focus on Alternative and Complementary Therapies 20 (1): 13–22. Smith, P.J., S.G. Humiston, E.K. Marcuse, Z. Zhao, C.G. Dorell, C. Howes, and B. Hibbs. 2011. “Parental Delay or Refusal of Vaccine Doses, Childhood Vaccination Coverage at 24 Months of Age, and the Health Belief Model.” Public Health Reports 126 (Suppl 2): 135–46. Tataryn, D.J. 2002. “Paradigms of Health and Disease: A Framework for Classifying and Understanding Complementary and Alternative Medicine.” Journal of Alternative and Complementary Medicine (New York, N.Y.) 8 (6): 877–92. http:// dx.doi.org/10.1089/10755530260511874. Vivion, M., A. Valderrama, D. Audet, and C. Sauvageau. 2011. “Vaccination et pratique sage-femme au Québec.” Paper presented at 15es Journées annuelles de santé publique (JASP), Montreal, QC, 28 November–1 December. Weeks, C. 2015a. “Health Experts Criticize Government Approval of Homeopathic ‘Vaccines’.” Globe and Mail. 18 February. – 2015b. “Health Experts Question Lack of Crackdown on ‘Homeopathic Vaccines’.” Globe and Mail. 17 February. “What Mothers Say: The Canadian Maternity Experiences Survey.” 2009. Public Health Agency of Canada. 25 March. http://www.phac-aspc.gc.ca/rhs-ssg/survey-enquete/ mes-eem-eng.php. Wieland, L.S., E. Manheimer, and B.M. Berman. 2011. “Development and Classification of an Operational Definition of Complementary and Alternative Medicine for the Cochrane Collaboration.” Alternative Therapies in Health and Medicine 17 (2): 50–9.

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Williams, S.E. 2014. “What are the Factors that Contribute to Parental VaccineHesitancy and What Can We Do about It?” Human Vaccines & Immunotherapeutics 10 (9): 2584–96. http://dx.doi.org/10.4161/hv.28596. Wilson, K., E. Mills, H. Boon, G. Tomlinson, and P. Ritvo. 2004. “A Survey of Attitudes towards Paediatric Vaccinations amongst Canadian Naturopathic Students.” Vaccine 22 (3–4): 329–34. http://dx.doi.org/10.1016/j.vaccine.2003.08.014. Wilson, K., J.W. Busse, A. Gilchrist, S. Vohra, H. Boon, and E. Mills. 2005a. “Characteristics of Pediatric and Adolescent Patients Attending a Naturopathic College Clinic in Canada.” Pediatrics 115 (3): e338–43. http://dx.doi.org/10.1542/ peds.2004-1901. Wilson, K., E. Mills, G. Norman, and G. Tomlinson. 2005b. “Changing Attitudes towards Polio Vaccination: A Randomized Trial of an Evidence-Based Presentation versus a Presentation from a Polio Survivor.” Vaccine 23 (23): 3010–15. http://dx.doi. org/10.1016/j.vaccine.2004.12.002. Yaqub, O., S. Castle-Clarke, N. Sevdalis, and J. Chataway. 2014. “Attitudes to Vaccination: A Critical Review.” Social Science & Medicine 112: 1–11. http://dx.doi. org/10.1016/j.socscimed.2014.04.018. Zhang, J., A. Ohinmaa, T.-H. Nguyen, L. Mashinter, M.N. Hanrahan, J. Loewen, W. Vaudry, and P. Jacobs. 2008. “Determinants for Immunization Coverage by Age 2 in a Population Cohort in the Capital Health Region, Edmonton, Alberta.” Canada Communicable Disease Report 34 (9): 1–11. Zuzak, T.J., I. Zuzak-Siegrist, L. Rist, G. Staubli, and A.P. Simoes-Wust. 2008. “Attitudes towards Vaccination: Users of Complementary and Alternative Medicine versus Non-Users.” Swiss Medical Weekly 138 (47–8): 713–18. http://dx.doi.org/2008/47/ smw-12423.

8 Epidemiologic Trends in Vaccine-Preventable Diseases and Immunization in Canada julie a . bet tinger and shannon e . macdonald

Until the late twentieth century, infectious diseases were the leading cause of infant mortality. The average life expectancy for Canadians in 1926 was only sixty years, compared to eighty-one years in 2011 (Statistics Canada 2016). This increase in life expectancy was primarily due to the lower risk of death from infectious disease during the first five years of life. As detailed by MacDougall and Monnais in chapter 5 in this book, until the early twentieth century, waves of epidemic disease (e.g., smallpox, diphtheria, measles, polio) swept through the population at regular intervals, resulting in high death tolls and creating heightened awareness and fear of disease in the general public. While English scientist and physician James Jurin conducted pioneering work on the epidemiology and surveillance of smallpox in the 1700s, epidemiology as a basis for public health action was limited before the 1890s (Cassel 1994). Chapter 4 by Réal Roy in this book describes the advances in bacteriology and microbiology that were required for the development of vaccines, while chapter 5, by MacDougall and Monnais, describes the development of public health and public health control measures that created the foundation of modern epidemiology, including infectious disease surveillance and outbreak response in Canada. As vaccines were developed, the focus of public health measures shifted to disease prevention and monitoring via vaccination and surveillance, resulting in the combination of the active and passive surveillance systems in place in Canada today. In this chapter, we describe the successes of immunization programs and provide examples of the erosion of these successes as a result of vaccine hesitancy linked to religious and cultural concerns. We detail the goals of immunization programs in Canada and describe the methods for vaccine delivery and for vaccine coverage measurement in children and adults. We describe the variability in vaccine delivery programs across the country and the impact that this has on

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the public’s perception and trust in vaccine programs, particularly among those with a cultural or religious predilection to vaccine hesitancy. To illustrate the critical role of vaccines and immunization programs in controlling previously common diseases, we describe the epidemiology and disease burden of three infectious diseases (measles, whooping cough, and polio) prior to and after the introduction of immunization programs. Then we highlight the effect of these programs on the elimination or control of each disease. Finally we examine the consequences of religious and cultural vaccine hesitancy on individual and population protection as illustrated through the recent resurgence of measles and whooping cough, two previously controlled vaccine-preventable diseases. Disease Control and Elimination Goals The pinnacle of public health disease control is the eradication, or “permanent reduction to zero” (Dowdle 1998, 23), of disease. However, even with today’s technology, this can only be achieved with a handful of diseases that have no other reservoirs but humans. Moreover, actual eradication requires tremendous political will, societal support, and funding. It is an investment to protect future generations. In fact, only one infectious disease has been eradicated in the world to date (smallpox). Two others (polio and measles) have been targeted for future eradication but have seen a recent resurgence due to vaccine hesitancy. Given the challenges of achieving complete disease eradication, the de facto goal of most public immunization programs has become the control of disease or “the reduction of disease incidence, prevalence, morbidity or mortality to a locally acceptable level as a result of deliberate efforts” (Dowdle 1998, 23). Canada’s goals for control of select vaccine preventable disease are outlined in Table 8.1. These goals were agreed upon at a National Consensus Conference in 2005, with an end point of 2010 (in most instances) for achievement. Further revision and redefinition of these goals, as well as potential targets for other vaccine preventable diseases are needed. It is interesting to note that goals for diseases such as polio and measles were not established, as these diseases were considered to be eliminated in Canada in 2005; as we discuss below, however, these are two illnesses that have returned in many places, largely due to religious and cultural objections to vaccination. As described in this book, many severe and disabling infectious diseases are now preventable, thanks to the introduction of a variety of vaccines. Most of the diseases targeted by these vaccines are now so rare in Canada that many individuals have no first-hand knowledge of the devastation these diseases can cause for individuals, families, or communities. The success of vaccines and the resulting low visibility of these diseases have led the public to overestimate

Epidemiologic Trends in Vaccine-Preventable Diseases and Immunization  231 Table 8.1  Canadian vaccine-preventable disease control and elimination goals, 2005 Disease

Goal

Pertussis

Achieve a sustained reduction in the reported incidence of pertussis among adolescents 10–19 years of age to at least the levels present in children 1–4 years of age by 2010. By 2010, achieve and maintain age-appropriate immunization coverage of 95% of 3 month and 7 month old infants, 95% coverage for 2- and 7-year-old children, and 85% coverage for adolescents. Eliminate indigenously transmitted cases of rubella and congenital rubella syndrome from Canada by 2010. Achieve and maintain age-appropriate immunization coverage of 97% by 2010. Achieve a sustained reduction of 70% and 90% in the incidence of varicella by 2010 and 2015 respectively. Achieve and maintain age-appropriate immunization coverage of 85% by 2010. Achieve a sustained reduction of 80% in the incidence of IPD in children < 2 years of age compared with pre vaccine incidence by 2010. Achieve a sustained reduction of 40% in the incidence of IPD in adults ≥ 65 years of age compared with 1998 incidence by 2010. Achieve and maintain age-appropriate immunization of 90% in children < 2 years and 80% in adults ≥ 65 years of age. By 2010, achieve a sustained reduction of 70% in the overall incidence of Neisseria meningitidis serogroup C, a 90% reduction in children < 5 years of age, and a 95% reduction in adolescents aged 12–19 years of age. Achieve and maintain age-appropriate immunization of 97% of 2-year-old children and 90% of adolescents at 17 years of age. No national targets for disease reduction exist. Maintain immunization coverage of 95% of residents and staff of long-term care facilities and 80% of adults aged ≥ 65 years of age, adults and children with high risk health conditions and household contact of individuals at high risk and health care workers.

Rubella

Varicella

Invasive pneumococcal disease (IPD)

Invasive meningococcal disease

Influenza

Source: Public Health Agency of Canada (2008).

the risks from vaccines relative to the risks of disease. This has contributed to the growing problem of vaccine hesitancy in the general population, as well as among religious and cultural groups already resistant to vaccines. One mother captured well some of the common concerns that exist in the public: “Many new vaccines are being developed. I am not convinced they are necessary and may be a money grab from drug companies.”1 However, vaccination programs provide the foundation for control and elimination of infectious diseases in Canada. To provide a deeper understanding of the use of immunization as a public health control measure, the next section will provide an overview of

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immunization programs and policies in Canada and identify challenges that these pose for promoting public confidence in vaccines. Immunization in Canada The administration of immunization programs in Canada is complicated by the fact that the responsibility for health care policies and programs lies with each provincial/territorial (P/T) government. This limits the ability to coordinate immunization delivery programs across the country.

The Federal Role in Immunization Programs and Policies Health Canada has authority for the licensure and safety monitoring of new vaccines, but its role is primarily advisory, acting through the National Advisory Committee on Immunization (NACI), the Canadian Immunization Committee (CIC), and the National Immunization Strategy (NIS). NACI consists of vaccine and infectious disease experts who provide guidance to the Public Health Agency of Canada (PHAC) on the recommended use of new/existing vaccines, research, surveillance, and best practices (Public Health Agency of Canada 2013). NACI recommendations guide individual health care practitioners and publicly funded vaccine programs in Canada. The CIC is a federal/ provincial/territorial committee comprised of senior public health representatives from each P/T. The CIC complements NACI’s role by developing common disease control and immunization goals, providing leadership and program delivery perspectives, and fostering harmonization of delivery and communication on immunization issues (Keelan 2008), guiding P/T decision-making about new vaccines using a framework of set criteria (Erickson, De Wals, and Farand 2005) and working to implement the NIS. The NIS is an attempt to improve collaboration and coordination on immunization delivery at the federal and P/T levels. It was designed to (1) address inequalities in health care access arising from the differing ability of each P/T to fund expensive new vaccines, (2) assure a secure and dependable supply of vaccine in each P/T, and (3) address public concern about vaccine safety and disease outbreaks (Advisory Committee on Population Health and Health Security 2004). The NIS also proposed national goals and objectives for immunization programs, presented common criteria to assess and prioritize new vaccines (Erickson, De Wals, and Farand 2005), proposed a coordinated network of immunization registries, enhanced surveillance for vaccine-­ associated adverse events and vaccinepreventable diseases, and facilitated the federal and P/T vaccine procurement process.2

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P/T Vaccine Delivery Publicly funded immunization programs and schedules vary across the country; the variability includes who administers the vaccines, which vaccines are provided, and the number of doses and age at each dose. These regional differences exist as a result of P/T jurisdiction over health care decision-making, differences in each P/T’s ability to pay for new and expensive vaccines, availability of experts or expert committees at the provincial level, lack of national leadership, and regional variation in disease epidemiology (Naus and Scheifele 2003; “A Patchwork Policy” 2003; Keelan 2008). The providers of publicly funded early childhood vaccines vary by P/T. In some P/Ts, the vaccines are delivered in physician clinics (e.g., Ontario and urban areas of British Columbia [BC]), while in others, public health nurses deliver vaccines in community-based public health clinics (e.g., Alberta, Prince Edward Island [PEI], Northwest Territories, and Nunavut), and still other P/Ts utilize a combination of delivery providers and clinic settings (e.g., Quebec). For adult immunization, some provinces (e.g., Alberta, BC, Nova Scotia, and Ontario) utilize pharmacist delivery. An exception to the P/T responsibility for publicly funded vaccine delivery is First Nations populations living on reserves, who receive vaccines from either the individual First Nations band or the federal government (Health Canada’s First Nations and Inuit Health Branch), with some exceptions (e.g., in Quebec). Although NACI determines the recommended schedule for vaccine administration in Canada, each P/T ultimately decides which vaccines are included in their publicly funded programs and the schedule for administration.3 This results in considerable variability in immunization delivery and scheduling across Canada. Some public health experts argue that differences in P/T resources and population composition (including migration patterns, which can impact on disease epidemiology) necessitate tailoring vaccine programs and schedules to P/T needs, with the resulting variability between P/Ts permitting cross-jurisdictional comparisons of different vaccine schedules to determine the optimal approach (Bettinger et al. 2012; Tan et al. 2012; Bettinger et al. 2010). However, others are outraged at the lack of consensus among federal and P/T governments, public health decision-makers, and scientists on a single, objective, evidence-based, cost-effective, and publicly palatable approach. The lack of consensus on the number and schedule of publicly funded vaccines and the context in which they are provided may compromise the public’s confidence in immunization and contribute to vaccine hesitancy. As one mother observed, “Why does each province have different ‘standards,’ and also the U.S.A? It seems that immunization has a ‘political agenda’ behind it! This is

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what leaves parents feeling ‘skeptical’ about the ‘safeness’ of vaccinations and if they are really necessary!”4

Privately Purchased Vaccines Some vaccines are approved for use in Canada but are not publicly funded and therefore must be purchased by the individual. Some of these are recommended by NACI to be included in public programs but are not funded by all P/Ts. For example, NACI recommends rotavirus vaccine for infants, but as of 2016, it was not funded in New Brunswick, Nova Scotia, or Nunavut. Other vaccines (e.g., travel vaccines) are recommended only for specific individuals or situations and are typically purchased by individuals with a doctor’s prescription and may be reimbursed by private insurance companies. Lack of public funding for these vaccines is a recognized barrier to uptake by the public, as an individual’s financial resources may limit access; as illustrated below, lack of government funding is often perceived by the public as an indicator that the vaccine is not necessary or important (CPHA 2001). One parent at a well baby and immunization visit was interviewed for a cross-sectional study on parental acceptance of new vaccines and commented, “The perception is that the immunizations that are free of charge are the ones that the doctors feel are most important. So if it is covered through public health, it must be important. Not so much if we have to pay for it” (Fisher et al. 2014a, 2014b).

Adult Immunization Immunization of adults provides another important method for control of vaccine-preventable diseases. Waning immunity toward diseases from childhood vaccines necessitates booster doses of some vaccines to sustain immunity throughout adulthood, specifically for tetanus, diphtheria, and pertussis. The deteriorating immune system (called “immunosenescence”) of older adults (≥ 65 years) also leaves them at an increased risk for some diseases, necessitating additional vaccines, such as for pneumococcal disease, influenza, and zoster (shingles). As with childhood vaccines, each P/T decides which of these vaccines are included in their publicly funded programs, as well as the delivery method.

Mandatory Immunization Most P/Ts in Canada (in contrast to the U.S.) do not have mandatory immunization policies for school entry. The exceptions are Ontario, New Brunswick,

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and Manitoba. Parents in these provinces may still decline childhood vaccines on the grounds of medical, religious, or conscientious objection, but unimmunized children may be denied entry to school in the event of disease outbreak (Walkinshaw 2011a, 2011b). Mandatory immunization of health care workers (HCWs) has been a topic of great debate in recent years. Some P/Ts require HCWs to be protected against chickenpox (either by vaccination or a history of the disease), rubella, and pertussis. Immunization of HCWs against seasonal influenza has been notoriously poor, for reasons described in chapter 6 by Guay, Dubé, and Laberge. Other countries, however, have shown that mandatory immunization can work. In the United States, where mandatory influenza immunization policies have been in place for several years, there has been an increase in coverage of HCWs from 30 to 98 per cent (Rakita et al. 2010; Babcock et al. 2010) and a corresponding decrease in patient death, morbidity, and health service use (Hayward et al. 2006). In Canada, various strategies have been attempted in different jurisdictions to improve uptake. At an institutional level (e.g., in long-term care facilities and acute care hospitals), mandating influenza immunization or exclusion from work during an outbreak is common (Walkinshaw 2011a, 2011b); at a provincial level, two provinces (BC and New Brunswick) have moved to a “Vaccinate or Mask” policy to improve influenza immunization rates in their HCWs.

Measurement of Immunization Coverage Accurate tracking of who receives vaccines is essential for clinical care, administration, and evaluation of immunization programs and vaccine research. At the individual level, tracking vaccine uptake enables follow-up of incompletely immunized individuals and prevents administration of unnecessary additional vaccine doses (Yusuf et al. 2002). Individual-level coverage data that include the vaccine manufacturer and lot number also enables public health action in the event of vaccine failure, vaccine recall, or adverse events following immunization (Laroche and Diniz 2012). At the population level, measurement of vaccine coverage enables identification of under-immunized populations, evaluation of program impact, and determination of vaccine supply requirements. For research purposes, it enables study of vaccine uptake, effectiveness, safety, and the success of study interventions (Placzek and Madoff 2011; Salmon et al. 2006; Freeman and DeFriese 2003). The various P/Ts currently employ a wide variety of systems to track vaccine uptake. Some use immunization “booklets” that are filled in (with varying degrees of completeness and legibility) by immunization providers and kept by vaccine recipients; others use physician billing data or periodic telephone or

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postal surveys to assess population level coverage. A small number of P/Ts utilize population-based computerized immunization registries, a method which is typically the most valid, cost-effective, and accessible option for tracking immunization status (Davidson et al. 2003; McKinney et al. 1991; Czaja, Crossette, and Metlay 2005), particularly if immunization records from multiple providers and settings can be consolidated (Placzek and Madoff 2011; Boyd et al. 2002). Some jurisdictions rely on an assortment of these methods, which complicates measurement of immunization coverage provincially and nationally and results in numerous opportunities for errors and data loss (Watson et al. 2006; Dorell, Jain, and Yankey 2011; Bolton et al. 1998; Stecher et al. 2008). Both NACI and the NIS promote the adoption of a network of electronic immunization registries that are linked across Canada and would accommodate some P/T jurisdictional variation (Health Canada 2006; Advisory Committee on Population Health and Health Security 2004; Laroche and Diniz 2012). Currently, only seven of thirteen P/Ts (BC, Alberta, Saskatchewan, Manitoba, New Brunswick, PEI, and Yukon) have fully functional centralized computer immunization registries (Laroche and Diniz 2012), but none meet the criteria for national functionality or data standards for registries and coverage reporting (Guttmann, Shulman, and Manuel 2011; Haimes et al. 2005). Thus, in 2004, the federal government provided funding for a national public health surveillance system. Known as “Panorama,” it was envisioned to provide each jurisdiction access to a standardized electronic immunization registry (Laroche and Diniz 2012; Kwong 2010). However, despite the receipt of $200 million and initial P/T support, the goal of nationally linked electronic immunization registries has yet to be realized. Moreover, some P/Ts (e.g., Alberta) have opted out of the Panorama system. Further limitations of the system include an inability to access records across jurisdictions (Laroche and Diniz 2012), meaning that for Canadians who move from one jurisdiction to another, neither they nor their health care provider can easily access previous immunization data. In addition, in most P/Ts, only public health immunization providers will have direct access to the registry, while physicians, who provide the majority of immunizations in some P/Ts (e.g., > 90 per cent in Ontario), will likely have to submit written records for data entry into the system. The system will also likely exclude non-publicly funded and adult vaccines, leaving significant gaps in coverage measurements. Although challenging, creating a nationally linked immunization registry is possible. Other countries (e.g. Australia, Great Britain, New Zealand, and Denmark) already have such registries (Guttmann, Shulman, and Manuel 2011). In the U.S., 82 per cent of American children under six years of age are enrolled in an electronic registry, though the registry records are not always linked nationally (Fath, Ng, and Pabst 2012).

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The current lack of coordination for immunization coverage measurement and reporting in Canada makes cross-jurisdictional comparisons difficult, if not impossible. Differences in vaccine coverage between a province using an electronic registry and one using periodic assessment of physician billing codes may tell us more about differences in measurement technique than about program effectiveness or true population differences. Improvements in immunization registry systems in Canada are an absolute necessity in order to identify high-risk populations for under-immunization and vaccine-preventable disease outbreaks, to track trends in coverage over time and across geographic regions, and to provide optimal clinical care to individual Canadians (Heidebrecht et al. 2011).

National Immunization Coverage Surveys In the absence of a nationally linked immunization registry, National Immunization Coverage Surveys (NICS) of childhood and adult vaccines are conducted approximately every two years by PHAC to monitor progress towards national targets for immunization coverage. These surveys of self-reported immunization uptake (with a partial validation against provider records) offer the only currently available measure of national immunization coverage. However, the significant methodological limitations to the NICS – including the potential inaccuracy of self/parent reporting, small sample sizes, low response rates, ongoing changes in methodology that make multiyear comparisons of coverage challenging, and under-representation of special populations (e.g. First Nations people living on reserves, individuals whose first language is not English or French, and those without landline telephones) – combined with significant delays or absence of published reports, limit its access and value (Laroche, Frescura, and Belzak 2010).

2011 Childhood National Immunization Coverage Survey The childhood NICS, conducted in 2011, was a telephone survey with parents/guardians of children aged two years (n = 395), seven years (n = 324) and 17 years of age (n = 308) (Public Health Agency of Canada 2012). As indicated in Table 8.2, coverage for children two years of age ranged from 76.5 per cent for pneumococcal vaccine to 95.2 per cent for measles, mumps, rubella (MMR). These rates dropped significantly in children aged seventeen years of age, which may reflect a true decrease or loss of records over time. The numbers in Table 8.2 consistently fall below the recommended 95 to 97 per cent coverage required to maintain population-level or herd immunity5 (Public Health

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Table 8.2  Up-to-date coverage estimates by vaccine for Canadian children aged 2, 7, and 17 in 2011 Vaccine

2 year olds

DTaP-IPV-Hib MMR Varicella Pneumococcal conjugate Meningococcal C conjugate

7 year olds

17 year olds

# of doses

% # of % # of % coverage doses coverage doses coverage

≥4 ≥1 ≥1 3 or 4a 1, 2, or 3b

87.90 95.20 88.60 76.50 80.50

≥5 ≥2

86.90 94.90

≥6 ≥2

77.60 86.90

Source: Public Health Agency of Canada (2012). NOTE: Varicella, Pneumococcal conjugate, and Meningococcal C conjugate are not given at 7 or 17 years of age. DTaP-IPV-Hib = Diphtheria, Tetanus, acellular Pertussis, Polio and Haemophilus influenzae type b; MMR = measles, mumps, rubella a Depending on the province/territory. b Depending on the province/territory and age at first dose.

Agency of Canada 2008; John and Samuel 2000), leaving a large proportion of Canadian children unprotected from potentially devastating, and largely preventable, infectious diseases. It is important to note that these numbers do not reflect the coverage in certain populations with typically lower coverage rates, such as First Nations children, and that the flaws in the survey methodology limit the reliability of the results overall. Other methods may provide a more accurate measure of coverage (e.g., serology, regional registries, physician billing data), but the inability to use a consistent method across the country limits regionl and national comparisons. A recent Canadian report published vaccine coverage rates by P/T, as determined by each P/T data source, and found coverage rates significantly lower than those reported in the NICS (Busby and Chesterley 2015). Neither this report nor the NCIS are able to identify geographic clustering of under-immunized populations, which can undermine herd immunity and expose children to disease (such as the 2005 rubella outbreak in Ontario and the 2013 measles outbreak in Alberta and BC).

2012 Adult National Immunization Coverage Survey The most recent adult NICS was conducted in 2012 and involved a telephone survey administered to 3,005 adults across Canada (Public Health Agency of Canada 2014). As can be seen in Table 8.3, coverage for seasonal influenza and varicella vaccines are below recommended levels for health care workers, as is

Epidemiologic Trends in Vaccine-Preventable Diseases and Immunization  239 Table 8.3  Adult (≥ 18 years) immunization coverage in 2012 Vaccine

Coverage achieved

National target for coverage

37.20% 68.60%

N/A 80%

39.70% 64.90%

N/A N/A

49.70%

N/A

42.90%

100% demonstrated immunity, by either history of disease, positive serology or prior immunization

Pertussis (1 dose as an adult) General population

 6.70%

N/A

Pneumococcal polysaccharide Adults 65+ years

   38%

80%

HPV General population (18–30 years)

12.20%

N/A

Seasonal influenza   General population   HCWs in close contact with patients Hepatitis B   General population   HCWs in close contact with patients Tetanus (1 dose in past 10 years) General population Varicella (1 dose ever)   HCWs in close contact with patients

Source: Public Health Agency of Canada (2014). HCWs = health care workers; HPV = human papillomavirus.

pneumococcal polysaccharide vaccine for adults over the age of sixty-five years. Overall, vaccine coverage in adults falls well below national targets for all vaccines for which targets exist.

Summary of Immunization Coverage The extreme variability in immunization programming and coverage measurement among P/Ts is a significant barrier to understanding the extent of under-immunization and to identifying effective solutions. The appearance of dysfunction, which arises from the asynchronous schedules across P/Ts, does little to promote confidence in Canada’s vaccine programs, and indeed, it may well erode public confidence. In addition, the lack of a nationally linked immunization registry prevents program administrators and clinicians from identifying gaps in service delivery to improve uptake and prevents individuals from tracking their own or their child’s immunization history.

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The NICS in adults and children, although flawed, clearly indicates that uptake is suboptimal. This may be due to non-completion of immunizations in the schedule (i.e., starting but not completing) or outright refusal of all vaccines. In the U.S., where immunization upon school entry is mandatory (unless a medical, religious, or philosophical objection is claimed), we know that refusals are on the rise, as evidenced by the number of parents filing non-medical exemptions (Omer et al. 2009; CDC 2012c). Limited comparable data exist in Canada, where most P/Ts do not have mandatory immunization policies for school entry, so vaccine refusal at school entry is not documented. However, we do know that in some provinces, such as Alberta, the number of children who have received no immunizations at all by the age of two years has been gradually increasing, from 3.0 per cent in 2008 to 4.6 per cent in 2011 ­(MacDonald 2013). The potential reasons for refusal and hesitancy towards vaccines are discussed in detail by Guay, Dubé, and Laberge (chapter 6 in this volume). To achieve the goals for infectious disease control in Canada, the number of individuals immunized needs to remain high. It is clear that both children and adults in Canada are failing to reach the requisite level of uptake to afford them with protection from disease at an individual and population level. Without optimal immunization coverage, vaccine-preventable diseases will resurge, as discussed in the next section. Epidemiology of Selected Vaccine-Preventable Diseases

Measles Measles is a highly infectious respiratory disease caused by a virus (orthomyxovirus). It causes illness in nine out of ten susceptible individuals who come in contact with an infected individual and results in over 20 million cases each year worldwide. A typical illness lasts two to three weeks: the child experiences very high fever (40 degrees Celsius or higher), cough, and runny nose for about one week, followed by a very sore throat with rash in the throat lasting about four days, and followed then by a body rash that lasts about one week (CDC 2012a). However, serious complication may occur. Globally, measles causes 200,000 deaths each year, leads to miscarriage and premature births in pregnant women, and is a major cause of blindness. Measles kills one or two children for every one thousand children infected. For one in every one thousand children, it also causes encephalitis, an inflammation of the brain that can lead to convulsions and can leave a child deaf and/or mentally handicapped. Out of one hundred children infected, thirty will develop some complication from measles. Pneumonia is one of the most common complications and is the

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most common reason for hospitalization. Ear infections are another frequent complication that occurs in about seven children out of one hundred infected. Thrombocytopenia (in which a patient’s blood has lower than optimal numbers of platelets) occurs rarely (one in thirty thousand cases). In contrast to these serious complications from measles infection, the most frequent adverse reaction after vaccination with the MMR vaccine is fever (39 degrees Celsius or lower), which occurs in 5 to 15 per cent of immunized children about seven to twelve days after vaccination and lasts one to two days. About 5 per cent of vacinees report a transient rash seven to twelve days after vaccination (CDC 2012a). Rare side effects of vaccination include thrombocytopenia within two months of vaccination, which occurs in less than one in thirty thousand doses, and encephalopathy (abnormal brain function), which occurs in less than one in 1 million doses. As several chapters in this book indicate (see especially chapter 1 by Bramadat), study after study has confirmed that there is no link between the MMR vaccine and autism or autism spectrum disorder (Immunization Safety Review Committee 2004). Although rumours about this connection continue to circulate in popular culture, from the perspective of the scientific community, these claims have been completely discredited. Nonetheless, the concern among parents has not abated. A mother expressed a fairly common concern: For me, vaccination is a worry, because before studying to become a teacher, I studied as a special needs teacher to work with children with disabilities such as autism. I’ve met with mothers who told me that their child was having a perfectly normal development up to a certain age and then, after the vaccine … uh … the development stopped and regressed and autism was diagnosed. For me, it’s not just things that you read or watch on YouTube or in TV shows. I’ve heard mothers telling these stories, I’ve worked with autistic children, so for me, vaccination is a worry because I wonder why it happens for some children and not for others. I wonder if I do vaccinate my child, will he develop something like autism or something else?6

Another mother commented, “My biggest concern about immunizations is the possible link with autism. Despite the reports of ‘no link’ I have yet to hear of a case of autism in a child that has never been immunized” (MacDonald, Schopflocher, and Vaudry 2014). Comparing the incidence of measles before and after vaccine implementation conclusively demonstrates the effect of the measles vaccine on the Canadian population. Figure 8.1 illustrates the number of measles cases and

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90000

900

80000

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70000

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60000

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Live vaccine approved (1963)

50000

500 Killed vaccine approved (1964)

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30000

300

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Measles was not required to be reported nationally between 1959 and 1968 (greyed out area in the figure). This graph illustrates the rate of disease before and after use of the measles vaccine. After the introduction of the two-dose measles program in 1996, all cases from 1996 to 2009 were shown to be caused by imported cases. Case data from 1924 to 2008 was obtained from the Canadian Notifiable Diseases Surveillance System. Case data from 2009 to 2011 was obtained directly from provinces and territories by PHAC’s Centre for Immunization and Respiratory Infectious Diseases and is preliminary. Population data was obtained from Statistics Canada and uses 1 July annual estimates. Graph provided by PHAC’s Centre for Immunization and Respiratory Infectious Diseases.

incidence during the pre- and post-vaccine era. Prior to the vaccine, epidemic peaks occurred every two to three years, with the largest epidemic in Canada occurring in 1935 with over thirty-four thousand cases (770 cases per 100,000 individuals) (Varughese 1986). The highest mortality was reported in 1929 with 892 deaths (Varughese and Acres 1979). After single-dose immunization programs were implemented from 1963 on, the average annual incidence decreased from 358 cases per 100,000 (1949–58) to 30 cases per 100,000 (1976–85), and by 1977, only eight deaths due to measles occurred (Varughese 1986; Varughese and Acres 1979). The incidence reached an all-time low of 0.04 per 100,000 (twelve cases in total) in 1998, one year after the introduction of a two-dose immunization program in toddlers and catch up immunization

Crude incidence rate (per 100,000 population)

Number of reported cases

Figure 8.1  Reported cases and incidence (per 100,000 persons) of measles in Canada by year, 1924–58 and 1969–2011

Epidemiologic Trends in Vaccine-Preventable Diseases and Immunization  243 Figure 8.2  Measles cases in Canada by year since 1924 (measles not nationally reportable from 1959–68)

Source: King et al. (2004). Used with permission.

campaigns in school-aged children (Figure 8.2), down from more than 83,000 cases and 892 deaths (King et al. 2004). Surveillance through 2001 indicated the interruption of endemic transmission of measles in Canada, and the majority of cases from 1998 onward have occurred in visitors from abroad or Canadian residents exposed while abroad. The Pan American Health Organization declared Canada (and the Americas) measles-free in 2002. As long as immunization coverage remained high and the majority of the population was immunized, local spread of imported disease was confined to religious communities that opposed vaccination (King et al. 2004; CDC 2000; van den Hof, Conyn-van Spaendonck, and van Steenbergen 2002). However, the confinement of measles outbreaks to unvaccinated communities has required stringent control measures, which are costly to taxpayers. Imported cases in Canada, Europe, and the United States rarely spread beyond a few local cases until the late 2000s (CDC 2005), when the increase in the number of unimmunized children in the general population and waning immunity among older immunized adolescents and adults created the perfect environment for local spread of disease, as has been exemplified by numerous outbreaks in Canada and worldwide (Table 8.4). During 2010 and 2011, Europe experienced its highest number of measles cases in fifty years (since vaccine introduction), with more than thirty thousand cases occurring each year. Most cases occurred in unvaccinated (82 per cent) or incompletely vaccinated (13 per cent) people. France has been the most

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Table 8.4  Measles outbreaks, 2010–12 Country, year

Number of cases

British Columbia, Canada, 2010 Europe (21 countries), 2010 Quebec, Canada, 2011 Europe (excluding France), 2011 France, 2011 Sydney, Australia, 2012 British Columbia, Canada, 2014 United States, 2014–15

70 30,264 776 15,361 15,206 172 400 855

affected, with over 15,000 cases. European cases in 2011 resulted in 8 deaths, 27 cases of measles encephalitis, and 1,482 cases of pneumonia (EMMO 2012). The epidemic continued in 2012, with over eight thousand cases reported across Europe, resulting in ten cases of encephalitis and, fortunately, no deaths (European Centre for Disease Prevention and Control 2012). Starting in 2011, the European measles epidemic spread to Quebec, initiating the largest outbreak of measles in the Americas since the disease was declared eliminated in 2002. The disease was imported from France, with the first Canadian case linked to the French epidemic. According to the Quebec Ministry of Health and Social Service, 776 measles cases were reported between 8 January and 22 December 2011. Most cases occurred in children and adolescents ten to nineteen years of age. Hospitalization was required for one case out of every nine (11 per cent), and complications from the disease, principally respiratory (e.g., pneumonia), were reported in sixty-four cases (8 per cent) (Gouvernement du Québec 2012). Health officials in Quebec estimated that close to 80 per cent of cases occurred in unprotected individuals who were unimmunized, ineligible to be immunized (e.g., infants), or who could not recall whether they had been immunized or had had the disease. “It’s the biggest outbreak in North America and South America since 2002,” said Dr. Horacio Arruda of Quebec’s public health department; “Other countries are looking at us, what we are doing because we don’t want to re-introduce measles into North and South America” (CBC News 2011). Following the 2010 Olympics, BC also experienced a measles outbreak, when the disease was imported by out-of-town visitors and contracted by three ­intentionally unimmunized Vancouver adolescents and young adults who attended the Olympic ceremonies. The disease rapidly spread among other unimmunized family members, then out into the community, resulting in over seventy cases across the province by April 2010. Infants through adults were

Epidemiologic Trends in Vaccine-Preventable Diseases and Immunization  245

affected, with close to 75 per cent of the cases occurring in unimmunized individuals or in individuals whose immunization status was unknown (BC Centre for Disease Control 2012). The remaining cases were in incompletely immunized children and adults with waning immunity. In 2014, BC experienced an even larger outbreak that originated in a religious school in a community opposed to vaccination outside of Vancouver. Cases spread within the religious community of 1,200 people, but only 4 of the 392 cases occurred outside the religious community. In this instance, the community was willing to work with public health officials to contain the spread of infection through school closure and quarantine measures rather than vaccination (Van Buynder 2014). Until recently, the story had been quite different in the United States, where measles was declared eliminated in 2000. Although periodic outbreaks due to imported cases had occurred, and appeared to be on the increase, endemic transmission had not resumed in the United States (CDC 2012b) – until an outbreak occurred in Disneyland in California. The Disneyland outbreak infected 111 individuals from seven states and at least two countries (including Canada; see Guay, Dubé, and Laberge, chapter 6 in this volume) by April 2015. Close to half of the cases occurred in unvaccinated individuals, and 76 per cent of the unvaccinated cases were people intentionally unvaccinated due to religious or cultural beliefs (Zipprich et al. 2015; CDC 2015b; Clemmons et al. 2015). This outbreak provides the clearest evidence to date of the international spread of religious and cultural vaccine hesitancy and the impact it can have on disease transmission.

Pertussis Pertussis, or whooping cough, provides another example of a well-controlled vaccine-preventable disease that has recently re-emerged due to low immunization coverage often related to religious communities. Neither infection with the disease nor immunization provides life-long protection against this highly contagious respiratory infection, and booster doses of the vaccine are required. Pertussis infections occur in all age groups, but infants are at particularly high risk for infection and suffer the greatest morbidity and mortality. The pertussis bacteria (Bordetella pertussis) causes inflammation in the lungs, airways, throat, and nose, which leads to breathing difficulties. The first stage of illness appears similar to a cold, with symptoms of a mild fever and occasional cough. After one to two weeks, the cough becomes more severe, consisting of numerous, rapid, violent coughs followed by a long intake of air that sounds like a high-pitched whoop (thus the name “whooping cough”). Young infants and children frequently vomit after the cough and may turn blue due to lack of

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Figure 8.3  Reported cases and incidence (per 100,000 population) of ­pertussis in Canada by year, 1924–2011 250

Whole cell vaccine (1943)

200

20000 Acellular vaccine (1997/98)

15000

Adolescent acellular vaccine (1999–2004)

Adsorbed whole cell vaccine (1981–1985)

10000

150 100 50

5000

0 2009

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1989

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1949

1944

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1929

1924

0

Year Reported Cases

Incidence

Case data from 1924 to 2008 was obtained from the Canadian Notifiable Diseases Surveillance System. Case data from 2009 to 2011 was obtained directly from provinces and territories by PHAC’s Centre for Immunization and Respiratory Infectious Diseases and is preliminary. Population data was obtained from Statistics Canada and uses 1 July annual estimates. Graph provided by PHAC’s Centre for Immunization and Respiratory Infectious Diseases.

oxygen. The cough can last one to two months. Pertussis mortality is similar to measles: it kills two out of every one thousand people infected, usually infants. As with measles, pneumonia is a common complication of pertussis, occurring in over 5 per cent of cases and 12 per cent of infant cases, and is the most common cause of pertussis-related deaths. Brain damage caused by the infection occurs in 1 per cent of cases; it ranges from mild to severe and can be permanent. Less serious complications include earache, dehydration, rib fracture, and hernias (CDC 2012a). In the pre-vaccine era (Figure 8.3), the highest incidence of pertussis occurred between 1934 and 1944, when the average annual incidence rate was 160 per 100,000 individuals, with a peak in 1934 of 19,484 cases and an incidence of 182 per 100,000. The introduction of the diphtheria-pertussis vaccine in 1944 led to sharp declines of up to 93 per cent in the incidence of disease by 1974–83. Prior to vaccine programs, infections occurred most commonly in the toddler age group (one to four years of age) after the loss of maternally acquired antibodies.

Crude incidence rate (per 100,000 population)

Number of reported cases

25000

Epidemiologic Trends in Vaccine-Preventable Diseases and Immunization  247

Deaths peaked at about three months of age but continued into early childhood (one to four years of age), and the case fatality rate in the pre-immunization era was thirty-five deaths for every one thousand cases (Varughese 1985) or about 3.4 per cent of all cases in 1930 (Brooks and Buchanan 1970). Pertussis typically increases in a cyclical pattern every three to four years, and while the incidence of disease has dropped dramatically since the introduction of the vaccine, the cyclical pattern of infection has remained unchanged by vaccination. The age distribution of cases and case fatality by age, however, has changed since vaccine introduction. The majority of pertussis infections in the post-vaccination era occur in older children, adolescents, and adults who are unvaccinated or in whom the protection from the vaccine or from prior infection with pertussis has waned. These groups transmit the infection to infants who are either too young to be vaccinated or unvaccinated. Case fatality is highest among the very young (e.g., infants younger than four months), with up to four infants dying from infection each year in Canada, for a case fatality rate of one per one thousand cases or 0.2 per cent (Varughese 1985; Gold et al. 1994; Halperin et al. 1999; Mikelova et al. 2003; Bettinger et al. 2007; Brooks and Buchanan 1970). Deaths in young children (aged one to four years) have disappeared with immunization. The reduction in pertussis mortality attributable to immunization was demonstrated in a review of the U.S. infant pertussis death rate from 1900 to 1974. Had the decline in mortality from pertussis continued through these seventyfour years at the same relatively slow rate as it did from 1900 to 1939, there would have been eight thousand deaths from pertussis in the U.S. between 1970 and 1974, rather than the fifty-two deaths that occurred (Mortimer and Jones 1979). This dramatic change demonstrates how effective pertussis vaccinations have been. Unlike measles, in which the endemic transmission of disease was interrupted in North America, localized outbreaks of pertussis have continued in the post-vaccine era. A record number of pertussis cases have occurred in Canada, the U.S., Australia and the U.K. since 2010. In the U.S. alone, forty-eight thousand cases of pertussis were reported in 2012 with twenty pertussis-related deaths making it the most severe outbreak in over fifty years (CDC 2015a). The high number of cases continued in 2013 and 2014, with over twentyeight thousand cases reported in each of those years. Australia experienced over thirty-eight thousand cases in 2011 and eight infants deaths since 2008 (Nogrady 2012), but the number of cases has been reduced to fewer than five thousand in recent years. In Canada, large localized outbreaks in Manitoba and Saskatchewan began in 2009, leading immunization program planners to implement a “cocooning”

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immunization strategy to protect vulnerable infants, whereby all household contacts, including child and health care workers (e.g., midwives), were immunized to protect unimmunized vulnerable infants. A 2012 outbreak of pertussis in British Columbia lasted for over four months and required the immunization of hundreds of health care workers, parents, and pregnant women. In 2012, outbreaks also occurred in Alberta, Ontario, and New Brunswick, with one infant death occurring from pertussis in Alberta. The source of these outbreaks – and therefore, these deaths – is not mysterious. All of them have been linked to the decline of immunization rates and waning protection among individuals in these communities. In many cases, these declines appear to be due to the general increases in vaccine hesitancy discussed throughout this book; in other notable cases, decisions to reject immunizations are clearly the product of religious communities and beliefs (Eggers et al. 2006; Etkind et al. 1992). It is difficult to avoid the conclusion that outbreaks of pertussis in the community and the resulting infant deaths will continue until immunization coverage is maintained at adequate levels among adolescents and adults (the source of transmission to infants). By way of a final comment in this section, it is instructive to consider the risks associated with the acellular pertussis vaccine. About 20 to 40 per cent of immunized children will experience a self-limiting local reaction at the injection site such as pain, redness, or swelling, and 3 to 5 per cent of children will experience fever of 38 degrees Celsius that usually resolves within twenty-four to forty-eight hours. High fever (40.5 degrees Celsius) or febrile seizure are rare and occur at a rate of less than one in ten thousand doses of vaccine (CDC 2012a). These mild symptoms are in stark contrast to the effect of pertussis infection in an unimmunized child.

Poliomyelitis The epidemiology of poliomyelitis or “polio” demonstrates the successful eradication of this infectious disease from Canada. Polio is a viral infection caused by picornavirus, which is spread from one person to another by the fecal–oral route. The virus spreads from the gastrointestinal tract, to local lymph nodes, to the blood, and then it may infect the central nervous system and cause the paralysis associated with this disease. Polio is highly infectious: almost all (90 to 100 per cent) susceptible individuals who come into contact with the virus will become infected. However, most infections (90 to 95 per cent) do not cause symptoms. About 4 to 8 per cent of infections result in mild, non-specific illness (fever, sore throat, nausea, vomiting, or influenza-like illness), while 1 to 2 per cent of cases result in aseptic meningitis. Less than 1 per cent of infections

Epidemiologic Trends in Vaccine-Preventable Diseases and Immunization  249

cause paralysis, and the location of the paralysis depends on which nerve cells are infected and destroyed. Three different types of paralysis are common: (1) spinal polio, which results in asymmetrical paralysis, usually in the legs – about 80 per cent of individuals with paralysis have this type; (2) bulbar polio, which destroys nerves within the brain stem – this occurs in about 2 per cent of paralysis cases and is the most deadly form (25 to 75 per cent mortality); and (3) bulbar/spinal polio, which affects both the brain and the spine. The mortality rate is higher in adults than children, with 2 to 5 per cent of infected children dying and 15 to 30 per cent of infected adults dying (CDC 2012a; Heymann 2008). Improvements in water purity and general hygiene standards at the start of the twentieth century were responsible for increasing the pool of susceptible children who had never experienced polio infection, creating the ideal situation for an outbreak. Not surprisingly, in 1910, Canada experienced the first polio, or infant paralysis, epidemic and continued to suffer devastating epidemics until the Salk inactivated polio vaccine became available in 1955.7 Incidence was especially high starting in 1927 and peaked with a four-year epidemic from 1951 to 1953, with 9,568 cases and 500 deaths, for an incidence in 1953 of 28.3 cases per 100,000 population (Figure 8.4) (Barreto, Van Exan, and Rutty 2006; Varughese et al. 1989). During the height of the epidemic in 1953, the Royal Canadian Air Force made emergency deliveries of iron lungs across Canada. Winnipeg alone had ninety-two cases simultaneously requiring respirators (Barreto, Van Exan, and Rutty 2006). The inactivated poliovirus vaccine was introduced in 1955, with 800,000 children being immunized over a three month period. The number of poliomyelitis cases reported in 1955 was 584, as compared with 1,456 cases in 1954. By June of 1957, about 86 per cent of children aged zero to eighteen years had been vaccinated against polio, and the incidence plummeted to 1.1 cases per 100,000 in 1957, with just 185 cases reported, representing an eightfold decrease between 1954 and 1957 and the lowest number recorded since 1924, when national case reporting began (Varughese et al. 1989). In 1962, the “live” oral polio vaccine (the Sabin vaccine)8 was licensed in Canada. This vaccine was given orally and was therefore easier to administer. By 1965, ten years after the introduction of the first polio vaccine, only three cases were reported nationally, and by 1968, no cases were reported (Barreto, Van Exan, and Rutty 2006). Dramatic and rapid eradication was only achieved through universal immunization strategies at the P/T level using the two available polio vaccines. An imported case from an unimmunized individual visiting Canada from the Netherlands caused the last outbreak of wild polio in Canada in 1978. The outbreak spread among unimmunized individuals in Ontario, Alberta, British Columbia, and the United States. The affected individuals all belonged to the

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Figure 8.4  Reported cases and incidence (per 100,000 population) of polio in Canada by year, 1924–2011 6000

45

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30 25

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3000 2000

20 15 10

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35

Year Cases

Incidence Rate

Case data from 1924 to 2008 was obtained from the Canadian Notifiable Diseases Surveillance System. Case data from 2009 to 2011 was obtained directly from provinces and territories by PHAC’s Centre for Immunization and Respiratory Infectious Diseases and is preliminary. Population data was obtained from Statistics Canada and uses 1 July annual estimates. Polio has been nationally notifiable from 1924 to the present. Inactivated poliovirus vaccine was approved for use in Canada in 1955. Oral poliovirus vaccine was approved for use in Canada in 1962. Graph provided by PHAC’s Centre for Immunization and R ­ espiratory Infectious Diseases.

same Dutch Reformed religious community as the index case from the Netherlands, and all objected to vaccination because they believed it represented an effort to alter God’s will for humans (Furesz 1979; CDC 1997; Varughese et al. 1989). Since the virus had been eradicated in Canada by this time, the consequences of not being vaccinated would seem to have been virtually non-­ existent for individuals, as they could reap the benefits of herd immunity. However, this individual choice, multiplied many times through this small religious community, would leave an unvaccinated group highly susceptible, as seen when the infected individual arrived from the Netherlands to visit his co-religionists in Ontario. Another outbreak occurred in the Netherlands in 1992–3 among the same religious group and resulted in sixty-eight cases. The polio

0

Incidence (per 100,000 population)

40 5000

Epidemiologic Trends in Vaccine-Preventable Diseases and Immunization  251

virus responsible for the outbreak in the Netherlands again spread to Canada and was found in forty-five individuals in the same religious community in southern Alberta. Fortunately, as stated above, most individuals who become infected do not develop symptoms, so in this case, although individuals were infected, excreting the virus and infecting others in their community, no one developed the symptomatic disease unlike during the previous outbreak in 1978 (Drebot et al. 1997; Barreto, Van Exan, and Rutty 2006; “Genomic Analysis of Type 3 Wild Poliovirus isolates in Southern Alberta” 1993; “Wild Poliovirus Isolated in Alberta” 1993). Since that case of polio imported from the Netherlands in 1978, no further clinical cases have occurred in Canada. Although polio has been completely eliminated from Canada, the group of susceptible individuals may actually be increasing due to waning immunity in adults who were immunized as children, as well as lack of immunization among children of some parents who no longer view polio as a threat. Indeed, in 2010, Tajikistan (in the former USSR) suffered from the first sustained outbreak of polio in a zone certified as polio free by the World Health Organization, serving as a reminder to other countries, including Canada, of the necessity for high immunization coverage (MacDonald and Hebert 2010). Although the overall polio immunization rate in Tajikistan was 87 per cent, this average rate masked communities with much lower coverage. This is similar to the situation in Canada, where the national coverage for polio vaccination is about 80 per cent (Laroche, Frescura, and Belzak 2010), but unimmunized communities, such as the Dutch Reformed in southern Alberta and other communities with much lower coverage levels, continue to exist and may well be growing. Public health officials have identified the known communities (religious or otherwise) that object to vaccination and attempt to forestall the spread of disease by maintaining high immunization coverage in the non-objecting communities surrounding these groups, as was shown in the 2014 measles outbreak in BC. However, individuals who opt out of immunization and do not selfidentify as being unvaccinated are much more difficult to track and may only be identified as living in susceptible communities in the event of an outbreak. Conclusion As illustrated above, immunization programs have been the most effective tool we have used in our pursuit of the eradication, elimination, and control of infectious diseases in Canada. The existing evidence conclusively confirms that vaccines offer protection to the individual as well as the population. However, herd immunity, which limits disease spread between individuals, depends on an equal distribution of a very small number of non-immune individuals in the

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population. Thus, a group of unimmunized individuals in a defined geographic region eliminates population level protection and allows outbreaks of diseases to occur. The evidence that we have regarding immunization coverage rates in Canada, while flawed, indicates that coverage for both childhood and adult vaccines is well below optimal levels. Many unanswered questions remain due to the lack of valid and reliable data available in Canada. Anecdotal and direct evidence shows an increasing number of vaccine-hesitant individuals in the Canadian population. These include “fence-sitters,” who have concerns but so far continue to accept most or all immunizations. Should these fence-sitters opt out of vaccines in the future, a precipitous drop in immunization coverage is a very real possibility, as has indeed occurred in some communities, illustrated by the outbreaks described above and elsewhere in this book. As Dr. Noni MacDonald eloquently stated in her 2010 plea for improved polio immunization, “We are only one asymptomatic infected traveler away from a polio outbreak because of low vaccination rates” (MacDonald and Hebert 2010, 1013). NOTES 1 Statement from the mother of a two-year-old, provided in a postal survey of parents’ perceived barriers to vaccine uptake. The study design and results are reported in MacDonald, Schopflocher, and Vaudry (2014). 2 A 2007 interim evaluation of the NIS found a number of shortcomings that had not been addressed, namely, limited public health research, poor coordination between CIC and NACI, insufficient attention to special populations (transient populations, immigrants, Aboriginal peoples), and lack of sustainable funding for immunization programs (Public Health Agency of Canada 2009). No further recent formal evaluation of the NIS has occurred since this 2007 interim report, but it is generally recognized that, although the NIS has facilitated bulk purchasing of vaccines, it has thus far been unsuccessful in harmonizing P/T immunization schedules or developing a national immunization registry (Eggertson 2011). Moreover, the strategy has not been revised since 2003. 3 See the PHAC website for current P/T immunization schedules: http://www.phacaspc.gc.ca/im/ptimprog-progimpt/table-1-eng.php. 4 Statement from the mother of a two-year-old provided in a postal survey of parents’ perceived barriers to vaccine uptake. The study design and results are reported in MacDonald, Schopflocher, and Vaudry (2014). 5 Herd immunity is the protection provided to unimmunized individuals when a large enough proportion of the population is immunized to prevent person-to-person

Epidemiologic Trends in Vaccine-Preventable Diseases and Immunization  253 spread through a community (John and Samuel 2000). Level of coverage required to achieve herd immunity varies by vaccine. 6 This passage is one among many from a study of mothers as part of a qualitative longitudinal study done in Quebec in 2011–12. The study was funded by the Canadian Institute of Health Research (MOP 115012), and details regarding the methodology and results can be found in Dubé et al. (2015). 7 Jonas Salk of the University of Pittsburgh developed the first polio vaccine in 1952. It is still used today and contains three killed poliovirus strains. 8 The Sabin vaccine was the second polio vaccine developed. It is a live-attenuated vaccine that contains three attenuated poliovirus strains. It was developed by Dr. Albert Sabin the United States and is still used today.

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Epidemiologic Trends in Vaccine-Preventable Diseases and Immunization  257 Heidebrecht, C.L., J.A. Pereira, S. Quach, J. Foisy, S.D. Quan, M. Finkelstein, S.L. Deeks, M. Guay, J.A. Bettinger, F. Kolbe, et al. 2011. “Approaches to Immunization Data Collection Employed across Canada during the Pandemic (H1N1) 2009 Influenza Vaccination Campaign.” Canadian Journal of Public Health 102 (5): 349–54. Heymann, D.L. 2008. Control of Communicable Disease Manual. 19th ed. Washington, DC: American Public Health Assn. Immunization Safety Review Committee. 2004. Immunization Safety Review: Vaccines and Autism. Washington, DC: Institute of Medicine. John, T.J., and R. Samuel. 2000. “Herd Immunity and Herd Effect: New Insights and Definitions.” European Journal of Epidemiology 16 (7): 601–6. http://dx.doi. org/10.1023/A:1007626510002. Keelan, J. 2008. “Concurrency in Public Health Governance: The Case of the National Immunization Strategy.” In The Role of Federalism in Protecting the Public’s Health, edited by K. Wilson and H. Lazar, chap. 2. Toronto: Institute of Intergovernmental Relations, Queen’s University. http://www.queensu.ca/iigr/sites/webpublish.queensu. ca.iigrwww/files/files/WorkingPapers/PublicHealthSeries/Keelan_PublicHealth.pdf. King, A., P. Varughese, G. De Serres, G.A. Tipples, and J. Waters. 2004. “Measles Elimination in Canada.” Journal of Infectious Diseases 189 (Suppl 1): S236–42. http:// dx.doi.org/10.1086/378499. Kwong, J.C. 2010. “Why Collect Individual-Level Vaccination Data?” Canadian Medical Association Journal 182 (3): 273–5. http://dx.doi.org/10.1503/cmaj.091515. Laroche, J.A., and A.J. Diniz. 2012. “Immunisation Registers in Canada: Progress Made, Current Situation, and Challenges for the Future.” European Surveillance 17 (17): 1–6. Laroche, J., A.M. Frescura, and L. Belzak. 2010. “Abstract P075: Results from the 2006 and 2009 Childhood National Immunization Coverage Surveys.” Poster presented at the 9th Canadian Immunization Conference, Quebec City, 5–8 December. MacDonald, N., and P.C. Hebert. 2010. “Polio Outbreak in Tajikistan is Cause for Alarm.” Canadian Medical Association Journal 182 (10): 1013. http://dx.doi. org/10.1503/cmaj.100831. MacDonald, S.E. 2013. “Exploring the Association between Parental Concern about Vaccine Safety and Incomplete Childhood Immunization: A Multivariate Model.” PhD diss., University of Alberta. http://hdl.handle.net/10402/era.30751. MacDonald, S.E., D.P. Schopflocher, and W. Vaudry. 2014. “Parental Concern about Vaccine Safety in Canadian Children Partially Immunized at Age 2: A Multivariable Model Including System Level Factors.” Human Vaccines & Immunotherapeutics 10 (9): 2603–11. http://dx.doi.org/10.4161/21645515.2014.970075. McKinney, P.A., F.E. Alexander, C. Nicholson, R.A. Cartwright, and J. Carrette. 1991. “Mothers’ Reports of Childhood Vaccinations and Infections and Their

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9 Canada’s Vaccine Safety System monika naus , barbara law , and aline rinfret

Introduction Clinicians and public health representatives in Canada and abroad are increasingly told by parents that one of the key determinants of their decisions about their children’s immunization is the safety of vaccines. For those involved in health research and the practice of medicine, it is often worrying to hear parents express anxieties, which are based on rumours and beliefs about health, science, religion, culture, and the spiritual realm, that might convey meaning for individuals and subcultures but are arguably not the best bases for making informed decisions about vaccines. This chapter will describe the regulatory approach to vaccine approvals in Canada and public health activities that are intended to assure the public about the safety of vaccines. We would like to start by making two key points. First, today’s system of vaccine safety has been significantly strengthened as a result of past safety issues, which led to significant changes in manufacturing requirements and strengthened regulatory oversight and “pharmacovigilance” practices. Vaccine pharmacovigilance refers to the science and activities relating to the detection, assessment, understanding, and communication of adverse events following immunization and other immunization-related issues; it also refers to the prevention of undesirable effects due to a vaccine or immunization (Council for International Organizations of Medical Sciences 2012). Second, but equally important, safety is a key driver in regulatory and immunization program policy decisions and involves multiple groups acting at all levels of government from federal to the local level, aided by expert committees of scientists and medical professionals. To illustrate both of these key points, Table 9.1 below presents a chronological list of examples, some of which are described in greater detail immediately below the table. The main objective of this chapter

Table 9.1  Key historical events that have shaped modern vaccine safety regulatory oversight, scientific testing, and post-market monitoring systems Date

Vaccine safety event or issue

Lead authorities

Responsive action

1901

Tetanus outbreak including thirteen fatal cases in children caused by contamination of a horse-serum based diphtheria antitoxin.

U.S. government

In July 1902, the U.S. Biologics Control Act was passed. It authorized issuance of regulations governing all aspects of commercial production of vaccines and biologic antisera and antitoxins (Center for Biologics Evaluation and Research 2002).

1928

Twelve of twenty-one children died after Australian Royal Report recommended a requirement for multidose immunization on 27 January with Commission initiated vials to have an antiseptic to inhibit bacterial growth. diphtheria toxin/antitoxin from a multidose within days of the If none was present, then the vial needed to be vial lacking antibacterial preservative. incident used immediately upon opening, with any remaining The vial was used on 17, 20, 21, and product discarded (Wilson 1967). 24 January without ill effect but was afterwards contaminated with the bacteria S. aureus.

1955

“Cutter incident”: incomplete inactivation of wild type polio virus in Salk injectable polio vaccine resulting in paralytic polio disease and deaths (Offit 2005).

1957–61

Thalidomide disaster: This was not a World Health Passed a resolution in 1963 inviting “Member States vaccine safety event but had implications Organization (WHO) to arrange for a systematic collection of information for vaccine safety monitoring. Thalidomide General Assembly on serious adverse drug reactions observed during was marketed for morning sickness the development of a drug and, in particular, after its during pregnancy. Pre-market studies release for general use” (World Health Organization failed to detect risk for congenital defects, 1973). This was the start of modern pharmacovigilance. Canada was among the first to respond, setting up its most notably phocomelia, resulting in system in 1965. absent or shortened limbs.

U.S. government

Regulatory oversight of manufacturing and new product approval process strengthened through the U.S. Laboratory of Biologics Control in 1955. Progressively introduced increasingly strict regulatory guidelines for good manufacturing practices with regulatory requirement for inspection and licensure of manufacturing facilities from 1962 to 1978.

1970

Atypical measles recognized among recipients of a formalin inactivated measles vaccine.

Health Canada regulators

Vaccine withdrawn from Canadian market for lack of effectiveness and safety concerns. Among those who contracted measles despite being vaccinated, the disease had an uncharacteristic presentation that caused a severe atypical rash and pneumonia.

1970s

Risks related to smallpox vaccine exceeded Provincial/territorial risk of smallpox disease, which was public health declared globally eradicated by 1979. authorities

1972: Smallpox vaccination of infants was discontinued. 1977: Smallpox vaccination of health care workers was discontinued.

1986

Trivirix® (Smith-Kline RIT, Belgium) Health Canada measles, mumps, and rubella vaccine regulators containing the Urabe strain of mumps was shown to increase risk of aseptic meningitis (1 case per 62,000 exposures).

The vaccine was taken off the market in 1989 (Furesz 2002; Brown et al. 1991). It was recognized that Canada’s surveillance system for vaccine safety signals needed to be strengthened to pick up rare events more rapidly.

1975–88 and 1990s

Allegations of harm caused by whole cell pertussis vaccine, including encephalopathy and death. In 1975, Japan halted pertussis immunization program while two infant deaths were investigated. Vaccine coverage plummeted, and from 1976 to 1979, pertussis epidemics swept the country, causing over 13,000 cases and over 100 infant deaths. Similar declines in coverage with return of pertussis epidemics and associated morbidity and mortality occurred in many European countries. In the U.S., the vaccine supply was threatened, as all but one manufacturer quit production because of increasingly frequent lawsuits.

Research community 1976–1979: Encephalopathy studies in the U.S. and Regulatory and public U.K. were conducted to assess risks associated with health authorities whole cell vaccine. Vaccine manufacturers In the U.S., the National Childhood Vaccine Injury Act was passed in 1986, which provided for no-fault Legal authorities compensation. Lawmakers In the U.K., in 1988, the courts concluded that brain damage was not caused by the vaccine (Loveday class action lawsuit). 1991: The Institute of Medicine Vaccine Safety Review panel was initiated to critically review available evidence (Institute of Medicine 1991). The panel concluded that the evidence supported a link between the whole cell vaccine and an acute encephalopathy, but that it was a very rare event (zero to ten per million immunizations). There was insufficient evidence to indicate a link between the vaccine and permanent brain damage. (Continued)

Table 9.1  Key historical events that have shaped modern vaccine safety regulatory oversight, scientific testing, and post-market monitoring systems (Continued) Date

Vaccine safety event or issue

Lead authorities

1975–88 and 1990s (continued)

Responsive action In 1991, PHACa initiated active surveillance to detect the frequency of serious adverse events in children, especially neurologic events, in collaboration with the Canadian Paediatric Society (Immunization Monitoring Program ACTive [IMPACT]; Scheifele and Halperin 2003). Joint global efforts were initiated to develop and test better tolerated acellular pertussis vaccines, which were available and in use by 1996. 2006: Dr. Berkovic and his scientific team in Australia showed that the encephalopathy blamed on whole cell pertussis vaccine was due instead to a genetic disease known as Dravet Syndrome (Berkovic et al. 2006; Scheifele 2013).

1994–96

Recognition that the risk of vaccineassociated paralytic poliomyelitis (VAPP) caused by vaccine strains, particularly type 2, in the oral polio vaccines exceeded the risk of wild type polio in North America.

Provincial/territorial public health authorities

Oral polio vaccine was replaced by inactivated polio vaccine across Canada. This eliminated the risk of VAPP.

1993–2003

The IMPACT network reported six cases of fatal disseminated Bacillus CalmetteGuérin (BCG) infection following BCG immunization (used to prevent tuberculosis) in infants with unrecognized immunodeficiencies.

PHAC NACIb Tuberculosis directors committee Federal/provincial/ territorial immunization authorities

A review of all serious adverse events following BCG immunization took place. NACI revised its recommendations for the use of BCG vaccine. This was accompanied by a program change to discontinue routine infant vaccination on First Nations reserves and use other means to prevent and detect tuberculosis infection in infants and children (National Advisory Committee on Immunization 2004; Deeks et al. 2005).

1998–2004

Allegation of link between measles vaccination and autism.

Theoretical concern that vaccines containing thimerosal could cause neurologic damage, including autism.

Research community

New methodology was developed for testing for possible links between vaccines and adverse events among highly immunized populations (self-controlled case series methods) (Andrews 2001). Researchers in multiple countries did studies to test the hypothesis that measles, mumps, rubella (MMR) or thimerosal-containing vaccines caused autism. 2004: The Institute of Medicine reviewed all available evidence and concluded that there was no causal relationship between MMR or vaccines containing thimerosal and autism (Institute of Medicine 2004).

Public Health Agency of Canada. This agency was created in 2004. Previously public health activities were conducted by the Laboratory Centre for Disease Control, Health Canada. For the purposes of this chapter, the term “PHAC” is used to designate both the current agency and its predecessor. b The National Advisory Committee on Immunization (NACI) is a group of experts in paediatrics, infectious diseases, immunology, medical microbiology, internal medicine, and public health supported by the Public Health Agency of Canada and reporting to the Assistant Deputy Minister of Infectious Disease Prevention and Control. The committee issues recommendations for the use of vaccines currently or newly approved for use in humans in Canada and produces the Canadian Immunization Guide, a resource relied upon by family doctors, public health nurses, and other immunization services nationwide. a

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is to describe how the Canadian regulatory and public health systems assess vaccine safety before and after regulatory approval. Our hope is that the story we have to tell about these aspects of vaccine safety will help to demonstrate the sophisticated and trustworthy nature of vaccine safety monitoring in the contemporary Canadian context. Historical Context of Vaccine Safety in Canada Vaccine development, production, regulation, and use have come a long way from their historical origins in the practice of “variolation” against smallpox in China in the eighteenth century (see chapter 4 by Roy in this volume). Safety was not a prominent concern in these early attempts to prevent death from the dreaded disease, and 2 to 3 per cent of subjects died of smallpox contracted from the procedure. Modern day protocols, practices, and principles are far different, driven partly by historical experience with vaccine safety incidents that have led to changes at all levels of the process, from the development to the use of vaccines. Moreover, these historical incidents have been analysed thoroughly, and the results of these examinations have continued to strengthen the overall safety of vaccines. An analogy can be made between the vaccine safety system and aviation safety: while millions of passengers travel safely on airplanes, every plane crash (i.e., every safety incident) undergoes a careful investigation in order to understand what went wrong and how a similar event can be prevented (Chen 1999). The fact that vaccine safety is now a key focus for the public is understandable, as the accrued benefits of vaccination over the past century have correspondingly reduced the public’s awareness of death and disability from vaccine-preventable diseases. As explained elsewhere in this book, vaccines have become victims of their own successes: some people, now, do not feel the urgent need for vaccines, since the illnesses for which the vaccines have been developed are almost never seen any more. This viewpoint can be summed up by one vaccine hesitant parent: “I believe that our immune system is strong enough to fight natural infection. In the past children survived without vaccines” (Guay et al. 2015). Table 9.1 contains a chronological listing of some key examples of vaccine safety incidents that have shaped the way vaccine safety is studied, regulated, and monitored, resulting in current day regulatory and public health policy and practices.The requirement for enhanced regulatory oversight of vaccine production came to light as a result of one of the worst tragedies in the history of modern vaccination: the Cutter incident. Both the causes and dire consequences of this tragedy are narrated in a seminal book written by Dr. Paul Offit (2005). This incident occurred in the context of polio epidemics that affected both the U.S. and Canada in the first part of the twentieth century, culminating

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in widespread outbreaks in the 1950s and the initial Salk inactivated polio vaccine established in 1953. In 1954, an extraordinarily large field trial that enrolled millions of children demonstrated the safety and efficacy of the Salk vaccine. Encouraged and reassured by this successful trial, the public demanded access to the vaccine to protect their children from this devastating infection. The vaccine’s manufacturing process was licensed by Jonas Salk to five U.S. vaccine manufacturers, including Cutter Laboratories. The vaccines were widely distributed, with nearly 5 million doses administered during mass vaccination campaigns held from 15 April to 7 May 1955. Unfortunately, incomplete inactivation of wild type polio virus resulted in numerous cases of vaccine-induced polio. The cases were associated with the vaccine produced by the Cutter Laboratories, which was promptly recalled. Ultimately, it is estimated that the Cutter polio vaccine led to 220,000 infections in children; of the infected children, 70,000 developed muscle weakness, 164 were paralysed, and 10 died. The vaccine created a human-made polio epidemic in which both recipients and also an estimated 100,000 individuals who had been in contact with recipients (such as household members) were infected by the vaccine strain. This public health nightmare gave rise in the summer of 1955 to a U.S. congressional hearing in order to assign responsibility for the tragedy. In the end, it was found, as with many human-made disasters, that a series of errors and failures of oversight ultimately led to the release of polio vaccine doses that were contaminated with live polio virus from a highly infectious strain. Government regulators also determined that Cutter Laboratories did not validate the Salk manufacturing process in their own facilities and that the filtration process, the storage of live bulk product, and the inactivation of the live virus using formaldehyde were all inadequate, resulting in the production of a vaccine containing infectious live virus. Moreover, the safety tests performed as part of quality control were inadequate, and they were not validated. For example, the equivalent of only one dose per lot was tested in a tissue culture test, reducing the probability of detecting live virus. The monkey neurovirulence test used to detect in vivo infection from residual live virus was not validated and was later found to be insufficiently sensitive for this purpose. Finally, Cutter Laboratories never informed the Biologics Control Laboratories, the U.S. vaccine regulator at that time, that nine of twenty-seven lots had failed safety tests, including five of the last seven produced, nor did they seek advice on this lack of manufacturing consistency. Responsibility was also assigned to the regulatory agency, which, in yielding to the public and political pressure to quickly approve the vaccines, required that the fifty-five-page manufacturing protocol developed by Salk be reduced to five pages, resulting in the original five-page description of the inactivation

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process being summarized in five sentences. In a process which now appears totally irrational to modern regulators, all five Salk inactivated polio vaccine manufacturers received approval following a three-hour review of fifty pages of manufacturing data. Moreover, the regulator removed the requirement to submit samples from consecutive lots for licensing. For the previous year’s polio vaccine clinical trials, eleven consecutive lots had been tested to demonstrate the consistency of the viral inactivation process. The regulator did not take into account that changes in production scale and facilities could alter the inactivation process. Finally, at that time, manufacturers were not required to report lots failing inactivation tests. These recognized failures led to myriad improvements in regulatory oversight of vaccine production and are further described below, in the section titled Health Canada’s Regulatory Oversight. A second vaccine safety example is also related to the polio vaccine, but not its production. Instead, it reflects the changing balance between benefit and risk around the use of a highly effective vaccine with an imperfect safety profile: oral polio vaccine. Unlike the inactivated polio vaccine described above, oral polio vaccine, a live attenuated vaccine, had been known to occasionally cause paralytic polio in recipients, because while it contains a much-weakened polio virus, that virus retains some virulence, especially in individuals with weakened immune systems. However, in spite of this risk, when disease incidence is high, oral polio vaccine is the preferred vaccine because it is administered via sugar-flavoured drops to the mouth and is much easier to administer than the inactivated vaccine. Oral polio vaccine (OPV) was used in Canada until the late 1980s. By this time, it was observed that the estimated risk of OPV-associated paralytic polio was one per 2.5 million doses distributed (Strebel et al. 1992). In Canada, eleven cases of paralytic polio associated with OPV were reported between 1980 and 1995.1 Following production and regulatory improvements after the Cutter incident, paralytic polio had not been further observed due to inactivated polio vaccine (IPV). Provincial/territorial programs discontinued the use of OPV beginning in 1994, with incorporation of IPV into the routine immunization schedule (NACI 2016). This policy change is an important example of a decision made at a population health level – the continued risk associated with using millions of doses of OPV each year was no longer deemed acceptable because of the rare risk of vaccine-associated paralytic polio. How Is Vaccine Safety Evaluated Pre-Licensure? The purpose of this section is to provide the reader with an overview of what can be learned from clinical trials before a vaccine is approved for use and marketed. Two key points to note are that clinical trials are the basis for product

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approval, and they provide vital information on product safety and efficacy. Such trials are usually the best source of information about the frequency of common adverse events attributable to the vaccine, but they cannot provide all possible information about safety, including the occurrence of rare adverse events. Clinical trials are now registered in the public domain (e.g., at ­ClinicalTrials.gov)2 to ensure that there is knowledge of trials that are conducted but from which results might not be published, as can happen when the findings are unfavourable for the sponsor/manufacturer. Furthermore, most reputable scientific journals now require proof of registration prior to publication of trial results. In 2006, the World Health Organization (WHO) advised that all clinical trials should be registered and indicated the minimum data set to be made available publically for each trial. It launched the International Clinical Trials Registry Platform in 2007. This platform contains single point access for searching for trials that are registered in various international registries, including ClinicalTrials.gov (World Health Organization 2017). Over the years, the requirements for complete disclosure of results, including adverse events, have been strengthened. These changes have been driven mainly by drug safety, rather than vaccine safety, as we can see in incidents such as the adverse effects associated with the anti-arthritis drug Vioxx® (Topol 2004; De Angelis et al. 2004). However, these relatively new requirements have also improved the transparency of vaccine clinical trials. These changes recognize the validity of such statements like that from a parent who said, “Vaccine companies will hide information if it’s not favourable for their product” (Guay et al. 2015); they also, however, attempt to address these concerns. Vaccine safety data are generated during the course of product development. Initially, testing is limited to laboratory testing and animal models. Initial clinical testing in humans (Phase I trials) involves small numbers of healthy adult volunteers. These trials provide very preliminary safety data related to common events such as vaccination site reactions and establish that a vaccine product elicits the desired immune response. Phase II trials consist of larger numbers of participants, the sample often randomized, and address the optimal dose schedule and vaccine formulation, as well as provide safety information on larger numbers of subjects. If the intended target group for the vaccine includes young children or infants, the age of enrolled subjects gradually decreases once the vaccine is shown to be safe and immunogenic in adults, older adolescents, and children. Phase III of testing is typically designed to demonstrate efficacy (ability to prevent the target disease in an experimental setting) of a product and gather more information about safety; from hundreds to tens of thousands of subjects

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may be enrolled in this phase. These studies require randomized controlled trials with two or more groups compared to one another. One group receives the vaccine under study, and the other receives a placebo, which is often an “active” product (such as a marketed vaccine with a well-known safety profile) but may also be an inactive placebo such as saline. Trials are almost always “blinded,” which means that neither the health care provider administering the vaccine and placebo, nor the study subject, nor those assessing outcomes are aware of who received the study vaccine or the placebo. This reduces the potential bias that may occur if either party expects certain outcomes. Randomization (or random assignment) of participants to vaccine or placebo ensures that participants have an equal chance of receiving either the vaccine or placebo and minimizes the chance that the two groups could differ in known and unknown characteristics (age, health status, ethnicity, etc.) that could affect the outcome of the study. Vaccine safety in clinical trials is usually observed for a limited period of time following vaccine receipt. That time period is generally defined by the biologically plausible time over which an adverse health outcome attributable to the vaccine could occur. The focus is usually the immediate post-vaccination period and a period of several (often between seven and thirty) days, but the period may be longer if deemed prudent or necessary in consultation with a regulator, or if specific events known or suspected to occur later are important to assess. For example, in the pivotal efficacy and safety clinical trial for the live attenuated human rotavirus vaccine, the investigators contacted parents of infants thirty and ninety days following receipt of each of the two vaccine doses to ascertain any occurrence of safety problems, including intussusception, a form of bowel obstruction in which the bowel slides into itself, which occurs at a background rate in infants without a clear-cut cause and had been observed at a slightly higher rate following the use of an earlier rotavirus vaccine (Ruiz-Palacios et al. 2006, Supplementary Appendix). An even longer follow-up was conducted in the large pivotal trial of the zoster (shingles) vaccine, in which 38,546 adults aged sixty years or older were enrolled into the placebo-­controlled trial. All were monitored actively for serious adverse events and rashes, as well as for injection-site events, during the first forty-two days following vaccine or placebo receipt. After this initial period, monthly contact was made with each recipient to identify any serious vaccinationrelated adverse events that the investigator considered to be possibly, probably, or definitely related to vaccination, as well as deaths, for a mean period of 3.4 years of follow-up. In addition, 6,616 subjects who had received the vaccine were enrolled in an adverse events substudy, in which hospitalizations were monitored monthly (Simberkoff et al. 2010).

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Table 9.2  Percentage of subjects with each solicited general symptom assessed as causally related to vaccination, reported from day 0 to day 7 after each human rotavirus (HRV) vaccine/placebo dose – Rota-036 pooled countries (Czech Republic, Finland, France, Italy, and Spain) Symptom

RotarixTM

Placebo 95% CI

LL

UL

95% CI

N

n

%

N

n

%

LL

UL

Dose 1 Cough/runny nose Diarrhoea Fever Irritability/fussiness Loss of appetite Vomiting

914 914 914 914 914 914

58 18 133 299 126 44

6.3 4.9 8.0 490 2.0 1.2 3.1 490 14.6 12.3 12.3 490 32.7 29.7 35.9 490 13.8 11.6 16.2 490 4.8 3.5 6.4 490

29 5.9 4.0 8.4 7 1.4 0.6 2.9 67 13.7 10.8 17.0 171 34.9 34.7 39.3 71 14.5 11.5 17.9 24 4.9 3.2 7.2

Dose 2 Cough/runny Nose Diarrhoea Fever Irritability/fussiness Loss of appetite Vomiting

905 905 905 905 905 905

53 6 164 238 118 18

5.9 4.4 7.6 486 0.7 0.2 1.4 486 18.1 15.7 20.8 486 26.3 23.5 29.3 486 13.0 10.9 15.4 486 2.0 1.2 3.1 486

34 8 95 123 57 23

7.0 4.9 9.6 1.6 0.7 3.2 19.5 16.1 23.4 25.3 21.5 29.4 11.7 9.0 14.9 4.7 3.0 7.0

N = number of subjects having received the considered dose of HRV vaccine/placebo n / % = number/percentage of subjects with the specified symptom reported for the considered dose 95% CI = exact 95% CI, LL = lower limit, UL = upper limit Source: GlaxoSmithKline Inc. (2016). Reprinted with permission from GlaxoSmithKline.

To illustrate findings from such assessments and describe the interpretation of differences in rates assisted by statistical analysis, Table 9.2 contains the frequency of adverse events observed in data pooled from several Phase III trials for the live attenuated human rotavirus vaccine. This vaccine was given orally to infants at two and four months of age (GlaxoSmithKline Inc. 2016). The frequency of adverse events evaluated in vaccine and placebo recipients following dose one and two are similar, with sizeable overlap in the ranges calculated around the observed frequency using 95 per cent confidence interval (CI) methods. While the observed frequency of cough/runny nose, diarrhoea, and fever were slightly higher in vaccine recipients after dose one, the frequencies of irritability/fussiness, loss of appetite, and vomiting are slightly higher in placebo recipients. Following dose two, this relationship is reversed for the first set of events, with cough/runny nose, diarrhoea, and fever slightly less frequently observed in vaccine recipients compared to the placebo group, and irritability/fussiness and loss

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of appetite slightly more frequent in vaccine recipients. Vomiting remained less common in vaccine recipients than placebo recipients with both doses. These data are based on about nine hundred vaccine recipients and almost five hundred placebo recipients, and they provide information indicating an acceptable safety profile for non-serious events commonly observed in unvaccinated infants and a very similar frequency of these events in both vaccinated and unvaccinated children. Such information can address the concerns of parents who say “I am worried about the side effects of the vaccine. I don’t want to hurt my child” (Guay et al. 2015). In contrast, the serious but rare outcome of intussusception was studied in over thirty thousand infants in each of the vaccine and placebo groups. This number of subjects was required in order to achieve a high degree of confidence that the risk elevation for intussusception associated with the vaccine did not exceed 2.5 per 10,000 in the thirty-one days following vaccine receipt, taking into account that the expected baseline rate of intussusception occurring in unvaccinated infants was 3 to 5 per 10,000. In other words, the study was designed to measure whether the excess risk of intussusception was at a level that would be less than double the total frequency of this event in infants, who are at some risk of intussusception even if unvaccinated. Differences between vaccine and placebo recipients are assessed by scientist clinicians from both perspectives of “clinical significance” (i.e., is the magnitude of difference important with respect to consideration of use of the product?) and “statistical significance” (i.e., was the difference so substantial that it is likely a “real” difference and not one being observed by chance alone?). Chance is usually defined at a threshold of one in twenty, which corresponds with the probability, or p-value, of an observation at a level of less than 5 per cent, or p < 0.05. In Table 9.2, the CIs indicate the range of values within which the “true” value would lie within a statistical likelihood of 95 per cent. The width of this range depends on the number of study subjects (shown as N in Table 9.2) and the number of observations for that event (shown as n). Smaller numbers result in larger ranges. If the range calculated for the vaccine group overlaps with that assessed in the placebo group, these CIs are deemed to “overlap.” This overlap indicates that the frequency of the event in the larger population reflected by these two groups is not truly different, within the limitations of standard assumptions regarding “statistical significance.” Regardless of the size of the population under study, clinical trials cannot ascertain rates of adverse events that are rare or very rare, and they may not detect events that are uncommon if only a few hundred subjects are enrolled. Therefore, post-marketing surveillance of vaccine safety is vital in establishing the safety of products for use in larger populations.

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Pharmacovigilance The modern system of pharmacovigilance was initiated after the thalidomide disaster of the mid-twentieth century, which made it clear that it is impossible to learn everything about the safety of a product prior to marketing approval and commercialization, when only a few hundred individuals have received the product. In 1963, WHO called for member states to continue to monitor product safety after marketing authorization was granted by regulatory authorities. Canada’s program was initiated in 1965. Multiple stakeholders play roles in vaccine pharmacovigilance: regulators, public health officials working at the federal, provincial/territorial, and local levels, as well as non-governmental organizations, researchers, vaccine manufacturers, immunization service providers, and other health care providers, and members of the public, who receive vaccines or care for others who receive vaccines. In the following sections, the key activities undertaken to assess vaccine safety in Canada are described.

Heath Canada’s Regulatory Oversight While vaccine stakeholders are concerned with adverse events following immunization, they are also preoccupied with the quality of vaccines. This preoccupation was documented in a 2002 survey of over one thousand Canadians, conducted by a group of investigators led by the University of Toronto and funded by the CANVAC, the Canadian Network for Vaccines and Immunotherapeutics. In this survey, in response to the statement that “the safeguards used in making vaccines are slack and ineffective,” 40.4 per cent indicated insufficient knowledge, 4.8 per cent indicated uncertainty, and 10.5 per cent agreed with the negatively worded statement (Ritvo et al. 2003). A more positively worded statement, “The vaccines available are very carefully and consistently tested for safety,” yielded similar results, as 22.9 per cent indicated insufficient knowledge, 4.5 per cent indicated uncertainty, and 5.3 per cent indicated negative attitudes toward the statement. Indeed, compared to pharmaceutical drugs, vaccines are highly complex biological molecules ranging from whole viruses or infectious organisms to proteins produced through recombinant DNA technology. Furthermore, the starting materials and/or the manufacturing process used in their production are of a biological nature and involve bacterial, yeast, insect, or mammalian cells. By nature, these are inherently variable and more difficult to control than the raw chemical materials used for the synthesis of pharmaceutical drugs. It is therefore extremely important to control the starting materials, the production

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processes, and the reference standards to ensure that the lots of vaccine product released on the Canadian market today are as safe and effective as the lots that were initially tested in clinical trials. For these reasons, the Canadian Food and Drugs Act (1985) and its associated regulations contain special provisions for the manufacture of biological drugs, including vaccines, to ensure appropriate oversight. Vaccines create an added challenge to biologic drug regulators since they are administered to large cohorts of healthy infants, children, and adults – a fact that makes many people view any adverse events as extremely unacceptable. As Brunk (chapter 3) and other authors explain throughout the volume, this situation requires extremely thorough risk-benefit assessments and enhanced regulatory oversight throughout a vaccine’s life cycle. The Cutter tragedy described earlier in this chapter had a profound impact on the vaccine and biologics regulatory framework, still felt today by both regulators and manufacturers. For example, mandatory regulatory requirements, such as the submission of validation data for each individual step of a biologics manufacturing process in each facility, and the demonstration of production consistency and regulatory lot release testing, were instituted by government authorities. In addition, the concept of regulated Good Manufacturing Practices was developed and enforced by regulatory bodies. Health Canada’s Biologics and Genetic Therapies Directorate (BGTD) is the Canadian federal authority responsible for the regulation of biological drugs. Currently in Canada, the approval of a new vaccine is based on a careful riskbenefit analysis that includes the following elements: (1) a review of documents about quality non-clinical (animal toxicology studies) and clinical trial information; (2) on-site evaluation of the process performed by BGTD regulatory scientists with expertise in the specific product; (3) independent testing of samples from at least three consecutive lots in BGTD laboratories to verify lot-tolot consistency; and (4) compliance with Good Manufacturing Practices. The regular review timeline for the approval of a new vaccine is three hundred days, and the documents, although now submitted in an electronic format, correspond to up to several hundred five-inch binders. The scientific review is based on the scientific expertise of highly qualified reviewers and on internationally accepted guidance documents. Health Canada has adopted many International Conference for Harmonisation3 guidelines (Health Canada 2013), providing additional clarification as required. Reviewers also rely on product specific and general guidance documents published by the World Health Organization (2013). These guidance documents are drafted by internationally recognized experts in their fields, often joined by invited Health Canada regulatory scientists, who contribute their experience and expertise

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in the fields of vaccine regulation, manufacturing, and clinical evaluation. The resulting documents are recognized and used internationally by both vaccine producers and regulators. In addition, guidance documents and pharmacopoeias (legislated standards) from larger regulatory agencies such as the European Medicines Agency (EMA) and the U.S. Food and Drug Administration (FDA) are used. As well, Health Canada (2011) has its own Good Manufacturing Practices guidelines. Risks versus benefits assessment is the basis of vaccine regulatory approval. Vaccines with risk profiles that would be unacceptable in our modern era were widely used and accepted in times when infectious diseases annually claimed millions of lives worldwide. For example, the first generation smallpox vaccine formulations, which led to the global eradication of this disease, would not be acceptable by today’s standards (see chapter 4 by Roy in this volume). A much more recent example of regulatory risk-benefit analysis is associated with discovery of virus detection technologies that were not available at time of licensure to identify contaminating porcine (swine) virus in both licensed rotavirus vaccines. This finding led the international regulatory community to review the safety data collected to date to examine the theoretical risks of porcine virus in humans and to contrast that to the high childhood mortality associated with rotavirus infection in developing countries (World Health Organization 2010). It was ascertained that the contaminant was present in the clinical trial lots. The clinical trials were conducted on more than sixty thousand children, and no safety signal that could be associated to this newly uncovered virus had been detected. In addition, more than 100 million doses of both vaccines had been administered to children since their licensure with no safety concerns. It was also noted that the porcine viruses in question, PCV1 and PCV2, are not known to cause disease in animals or humans, and they are often found in food products. The conclusion of the WHO, the EMA, the U.S. FDA, and Health Canada4 was that the benefits of these vaccines far outweigh the theoretical risks associated with porcine virus contamination. Manufacturers committed to eliminating these contaminating viruses from their products, a process that would take years given that these were present in both the cell and seed banks. Indeed, preparing new cell and seed banks requires extensive quality testing and process validation. In terms of quality and safety, process validation is also central to regulatory approval. Process validation must be designed to provide a high degree of assurance that a process (e.g., inactivated polio vaccine production) will function as it is intended in a reproducible and consistent manner. Manufacturers are required to validate each step individually, generally at full scale, from the manufacture of the master cell bank vials to the distribution of the final product

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vials to the customer. For each step, a validation plan must be written and include pre-specified acceptance criteria. The validation testing is executed, and a report is written to document whether the validation criteria were met. Since the Cutter incident, legislated Good Manufacturing Practices (GMPs) have been developed and implemented into a strict set of rules that provide a framework for quality assurance, ensuring that vaccines and other biological products are consistently produced and controlled to the quality standards appropriate to their intended use and as required by the product specifications (World Health Organization 1992). GMPs define quality measures for both production and quality control, and they define general measures to ensure that the processes necessary for production and testing are clearly defined, validated, reviewed, and documented. They also ensure that the personnel, premises, and materials are suitable for the production of drugs and vaccines. GMPs have legal components, as well, covering responsibilities for distribution, contract manufacturing and testing, and responses to product defects and complaints. The Health Products and Food Branch Inspectorate is mandated to deliver establishment licensing for manufacturing, testing, and distribution activities for products marketed in Canada, and it conducts regular GMP inspections in Canada and abroad (Health Canada 2011). Following its authorization for sale, a vaccine is subject to continuous regulatory oversight throughout its life cycle. Indeed, due to the inherent variability of biologics and vaccine risk profile, Health Canada has established a rigorous riskbased regulatory lot release program for all biologics marketed in Canada. For each lot of vaccine, as a minimum, a batch release protocol, which is an official summary of the results of all quality control tests that were applied to a particular lot, must be submitted to and reviewed by Health Canada before a lot release letter is issued to authorize the sale of the individual lot. Moreover, a large number of vaccines undergo quality control tests in Health Canada laboratories. The tests are selected based on their impact on product quality and the capacity to monitor trends over time. The analysis of the variability of results of both Health Canada and the manufacturer’s key quality control tests allows the regulator to ascertain how well the manufacturing process and the reference standards are controlled. In addition, Health Canada requests a yearly biological product report of all lots manufactured in the sponsor’s facility to gather information on the ongoing safety and quality of the product, including adverse events associated to the quality of the product, and to verify the consistency of the product. This report is critical in gathering information for vaccines that have very few lots marketed in Canada in a given year (e.g., travel vaccines). In addition, on the basis that, for biologics, any production process change can alter the finished product, Health Canada requires that all changes to

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vaccine manufacturing processes, facilities, and controls be approved prior to their implementation. This is done using a regulatory submission process where validation data supporting the change are reviewed by product specialists. The approval is again based on a risk-benefit assessment. In conclusion, although the Cutter incident in the 1950s was a terrible tragedy that is still recalled today, it has also contributed to the development of a strong and sophisticated regulatory framework for the oversight of vaccine quality and the establishment of GMPs, the net effect being that vaccines are among the most tightly regulated drugs in Canada. Post-Marketing Vaccine Safety Monitoring and Evaluation Following approval by Health Canada and private and/or public market introduction for use, vaccines enter the “post-marketing” phase, also known as Phase IV. In Canada, there are two main processes for vaccine safety monitoring: passive and active. At the point of care, recipients of vaccines should be informed about common or expected side effects from a vaccine and asked to report any unexpected or serious adverse events to their health care provider. Health care providers are encouraged, or, in some provinces, mandated under regulatory frameworks, to report adverse events that occur after receiving a vaccine to the local medical health officer / public health authority; such events are in turn reported through provincial/territorial public health departments or agencies to the federal government under a voluntary scheme. In eight Canadian jurisdictions (Ontario, Quebec, Saskatchewan, Manitoba, Nova Scotia, New Brunswick, Prince Edward Island, and Northwest Territories), reporting by the provider to the province is under legislative authority of the corresponding public health legislation. The purpose of such reporting is generally threefold: (1) at the individual level, the health care provider, with or without consultation with the local medical health officer, will determine whether the adverse event is sufficiently serious to be considered a contraindication to future use of that vaccine in this individual; (2) at the programmatic level, local, provincial/territorial, federal (e.g., for Department of National Defence) public health authorities monitor reports to evaluate program safety; and (3) at the national and global levels, public health and regulatory authorities review reports and conduct analyses for the purpose of signal detection. Such signals can be changes in the expected severity or frequency of known adverse events or one or more occurrences of unexpected adverse events that may require further investigation and possibly regulatory action. Such surveillance is usually referred to as “passive” or spontaneous reporting. In Canada, surveillance is enhanced via the collaborative

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efforts of public health authorities as well as by an active surveillance for serious adverse events following immunization (AEFI)5 conducted by the Canadian Immunization Monitoring Program ACTive. These are described in greater detail later in the section. The Canadian Adverse Events Following Immunization Surveillance System (CAEFISS) has always been focused on the three purposes of reporting described above. At the national level, the system is administered by the Vaccine Safety Section of the Surveillance and Outbreak Response Division, Centre for Immunization and Respiratory Infections, Public Health Agency of Canada (PHAC). Each province and territory contributes data6 to CAEFISS, using standardized reporting forms matching or modelled after the national form for collection of basic data (Public Health Agency of Canada 2016). Since development of the first national report form in 1988, designated AEFIs considered to be of special public health importance have been defined and listed for ready reporting. These include local reactions, such as infective abscesses, sterile abscesses, cellulitis, nodules, or lymphadenitis; anaphylaxis or other allergic reactions; neurologic events including meningitis, encephalopathy/ encephalitis, Guillain-Barré syndrome, Bell’s palsy, other paralysis, or seizure; and miscellaneous other events, including anaesthesia/paraesthesia, arthritis, hypotonic-hyporesponsive episode (HHE), thrombocytopenia, generalized or localized rash, intussusception, persistent crying, and parotitis. An “other serious or unexpected event” category enables providers to report events not specified on the form. Emphasis is placed on reporting serious events such as those that result in hospitalization, prolongation of an existing hospitalization, permanent disability, or death, and those that are life-threatening. In 2009, a new national AEFI report form was introduced that itemizes indicators of specific signs or symptoms needed to meet levels of diagnostic certainty according to the published Brighton Collaboration7 case definitions for events, including vaccination site abscess or cellulitis, anaphylaxis, neurologic events, HHE, and thrombocytopenia (Public Health Agency of Canada 2016). Reporting of minor events known to be somewhat common or very common following immunization, such as fever in infants, is discouraged. Recipients of vaccines or the recipient’s parent/guardian should be informed in advance of immunization about the likely occurrence of minor common events, and they should be provided with advice for the management of such events as appropriate. For most injectable vaccines, this includes mild to moderate redness and/or pain and swelling at the injection site, which can be managed with simple means such as cold compresses or analgesics (e.g., acetaminophen); the latter is also effective for treating fever, which may also be a common effect. Following an infant’s first dose of the measles, mumps, and rubella vaccine, fever is expected

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within about seven to twelve days, and a rash may be seen in up to 10 per cent of infants. Such expected side effects are described in fact sheets produced by provincial/territorial immunization programs or health ministries, also available from the national specialty and professional associations in Canada to support the informed consent process prior to vaccination (CPS 2017; Immunize Canada 2017). These fact sheets may also contain information about very rare events such as anaphylaxis – an allergic reaction that occurs in about 1 per 100,000 to 1 million vaccine recipients, depending on the vaccine; milder forms may occur more frequently – or Guillain-Barré Syndrome – a form of paralysis that is estimated to occur in about one per 1 million recipients of the seasonal influenza vaccine, but the risk of which is about seventeen-fold higher following regular influenza virus infection (Kwong et al. 2013). Parents of children receiving vaccines or the recipients themselves are also advised that if any worrisome health event occurs, they should seek medical attention. This is especially important because exposures other than vaccine or underlying health conditions may cause illness even in those who have been recently vaccinated, and recipients could misattribute an illness to vaccine. Active surveillance for adverse events following immunization has been operating in Canada through a PHAC-funded and Canadian Paediatric Society (CPS)-administered system called the Canadian Immunization Monitoring Program ACTive (IMPACT) since 1991 (Scheifele and Halperin 2003; Scheifele 2009). This system operates out of twelve of Canada’s paediatric tertiary care hospitals; it was established in 1991 following the appearance of aseptic meningitis due to the vaccine strain of the mumps virus in eight children after receipt of the measles, mumps, and rubella vaccine (Furesz 2002; Brown et al. 1991). This vaccine (Trivirix®, Smith-Kline RIT, Belgium) had been used in several provincial programs since 1986. Four years later, once these events were recognized, it was withdrawn from the Canadian market upon recommendation by Health Canada to the European manufacturer of the vaccine. The estimated frequency of mumps meningitis associated with Trivirix® in Canada was 1 per 62,000 recipients, which contrasts with a rate of 1 per 1.8 million doses for other mumps vaccines. Since its inception, the IMPACT system has provided valuable information about both vaccine safety and the occurrence of vaccine-preventable diseases and their complications in children. Notably among the risks and benefits of vaccine use, the system has documented substantial declines in the occurrence of febrile seizures and HHEs in infants and young children following the change from using whole cell pertussis to using acellular vaccines in the late 1990s; absence of encephalopathy following receipt of pertussis vaccines; thrombocytopenia in association with measles-containing vaccine; disseminated Bacillus

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Calmette-Guérin infection in Aboriginal infants with severe combined immunodeficiency syndrome (see Table 9.1); and dramatic declines in vaccine-­ preventable diseases such as invasive Haemophilus influenzae type b disease and hospitalizations and complications from varicella (chickenpox) infection. Vaccine Safety Signal Detection and Response: Lessons Learned and Systems Strengthened It is the responsibility of the public health system at all levels to recognize and respond to events that may constitute a new safety problem. Examples of recognized safety events that led to immunization policy changes in Canada prior to the year 2000 have been discussed above, including vaccine-associated paralytic polio and mumps vaccine meningitis. Such signals or clusters of events are rare and in recent years have been limited to recognition of the oculo-respiratory syndrome during the 2000–1 influenza season and higher than expected rates of anaphylaxis observed with certain vaccine lots. These are discussed further below, not only because they illustrate the types of signals seen currently but also to note how the experiences were used to identify gaps in and strengthen Canada’s vaccine pharmacovigilance system. During the 2000–1 influenza vaccination season, an event called “oculorespiratory syndrome” or ORS was recognized as strongly associated with the use of primarily one of the three influenza vaccines administered (National Advisory Committee on Immunization 2002). This event, consisting of eye redness along with cough, wheeze, chest tightness, difficulty breathing or swallowing, hoarseness, or sore throat, usually occurring a few hours after vaccination, had been uncommonly described in association with influenza vaccines in several other countries in prior seasons. In the 2000–1 season in Canada, 960 cases were reported, and although most were mild and resolved spontaneously within forty-eight hours, 24 per cent sought medical attention and 1 per cent were hospitalized; no deaths were reported. About 3.8 million doses of the associated vaccine, called Fluviral® S/F, had been distributed for use in Canada by BioChem Pharma. An investigation into this event concluded that during the manufacturing process, there was inadequate viral particle splitting that resulted in the formation of particulate aggregates that in turn may have caused an aberrant immunological response resulting in ORS. In the 2001–2 flu season, Fluviral® S/F was produced with the addition of a new splitting agent to reduce or eliminate the occurrence of the aggregates of one of the influenza virus strains (the A/Panama component) in the three-strain split influenza virus vaccine, which were hypothesized to be important in the causal pathway. In subsequent seasons, events compatible with ORS have been reported but

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at far lower rates than observed during the 2000–1 season. Information about the possible occurrence of this syndrome is now contained in the annual statement on the influenza vaccine published by the National Advisory Committee on Immunization and in fact sheets about influenza vaccines provided to vaccinees to assist in the informed consent process. Coincidentally, the ORS signal was first identified at the same time that a national meeting had been convened to consult federal, provincial, and territorial (F/P/T) public health, clinical, and research stakeholders across Canada regarding the development of a national strategy to enhance immunization safety (Health Canada 2001). At the meeting, a list of recommendations were put forward related to vaccine safety surveillance, public health action, communication, and research. In 2002, a follow-up meeting was held to prioritize several key recommendations and included in that was a review of lessons learned from the ORS signal and response experience. While ORS itself was not a serious signal that required regulatory action, it did serve to identify areas for pharmacovigilance improvement. These were captured in the final National Immunization Strategy (Minister of Health 2004), which made three proposals to establish the following: (1) a network of dedicated F/P/T vaccine safety contacts in all jurisdictions to improve signal generation and surge capacity, (2) a clinical assessment/referral system to clinically assess and follow individuals with adverse events suspected to be caused by vaccine, and (3) a vaccine safety committee to help identify potential issues, review surveillance and research safety data, review cases/clusters of concern, address limitations in vaccine monitoring and public health response systems, and enhance ongoing routine vaccine safety monitoring. One outcome of the National Immunization Strategy was the formation of the Vaccine Vigilance Working Group (VVWG), which has members from F/P/T public health authorities that oversee immunization programs, as well as Health Canada vaccine regulators and the IMPACT network. This working group has helped to achieve the first and third networks listed above. Since 2005, the group has worked to adopt AEFI case definition standards, revise the national adverse event report form along with a detailed user guide for completing it, and worked together to achieve standard approaches to monitoring and reporting on vaccine safety in Canada (Public Health Agency of Canada 2016). The group also added capacity for timely recognition and communication of possible new safety concerns. Although a vaccine safety event akin to the magnitude of ORS has not occurred in Canada in the past decade, the lasting impact of the event was the creation of a set of strengthened practices and networks, with a special focus on the influenza vaccine, which is formulated anew each year and undergoes only

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small scale testing prior to widespread use each autumn. The effectiveness of these new structures and practices was clear during the 2009 H1N1 pandemic vaccination campaign, which began on 25 October 2009. By 4 November, VVWG members reported increased numbers of allergic reactions, although most were mild and short-lived. Early in the campaign, Quebec communicated observing increased rates of allergic events, including eight cases of anaphylaxis per 1 million doses associated with one specific lot of vaccine (Rouleau et al. 2013). This prompted a review of all anaphylaxis reports received through national surveillance. By mid-November it was determined that one lot, named “7A” for the last two characters of the lot code, was associated with a rate of anaphylaxis of 4.1 per 100,000 doses distributed, compared to a rate of 0.38 per 100,000 doses distributed for all other lots combined; no other single lot exceeded a rate of 1 per 100,000. An urgent meeting to review all available data with Health Canada regulators and the manufacturer was held on 17 November, and on 18 November communications were issued to halt the use of lot 7A. At the same time, Health Canada launched an investigation into the root cause of these reactions. Tests by both the regulator and the manufacturer failed to find a vaccine-related cause for anaphylaxis. It is important to note that all anaphylaxis cases associated with lot 7A were treated quickly, appropriately, and effectively, and full recovery of all cases resulted. Since 2009, the VVWG continues to hold weekly teleconferences during the active part of the influenza vaccination season to discuss potential concerns, and it reports weekly counts of total and serious AEFI to help identify and respond to potential increases in counts quickly. Another significant advancement in Canada’s vaccine safety capacity realized during the 2009 H1N1 pandemic was the creation of the PHAC-CIHR (Canadian Institutes of Health Research) Influenza Research Network, which has now become the Canadian Immunization Research Network (CIRN; see http:// cirnetwork.ca/), which includes rapid clinical trials and vaccine safety-themed expertise. The network was initiated at almost the same time as the pandemic began, and yet it still managed to generate important evidence relating to the immune response to and safety of the vaccine in special populations, including children aged under two years, Aboriginal populations, and HIV-infected individuals. The network also monitored large cohorts of health care providers to seek early signals of vaccine safety. Similar cohort studies are now performed at the start of each seasonal influenza campaign. In 2012, such studies provided important data early in the campaign that the influenza vaccine Agriflu® (Novartis) had a good safety profile for common events, similar to that of other influenza vaccines. This allayed concerns arising from the actions of regulators in Italy and elsewhere in Europe who had recommended stopping the use of

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this vaccine because of concerns associated with detection of aggregates (protein clumps) in the vaccine at a greater level than typical. Ultimately the vaccine was released for use by Health Canada based on a thorough risk-benefit analysis; safety data from the PCIRN studies provided important information to allay concerns of Canadian public health authorities. Another key PCIRN initiative that began in 2013 helps to meet the second priority identified as part of the National Immunization Strategy. This initiative is the development of an expert clinical referral service (the Special Immunization Clinic Network) to assess those with serious adverse events following immunization, especially when evidence is needed to determine whether repeat doses of vaccine would be safe in these individuals. Canada’s Role in the Global Vaccine Safety Network Without question, vaccine safety is a global concern that requires collaborative and synergistic efforts of regulatory, public health, academic, and industry authorities. Most member nations of the World Health Organization, including Canada, contribute vaccine safety data to the global drug monitoring program located in Uppsala, Sweden. Such systems at the regional, national, and global levels are focused on monitoring adverse events to detect and react to emerging vaccine safety concerns, as has been discussed above. A key aspect of the response to such concerns is having the capacity to test hypotheses of possible vaccine-adverse event associations. Excellent resources exist in the United States, several European countries, and Australia that link vaccine registry data to health care utilization and outcomes data without compromising individual confidentiality or privacy (Coloma et al. 2011; Baggs et al. 2011). While Canada’s size makes it difficult to conduct studies of what are usually very rare events, the capacity for linked data studies exists and efforts are underway to increase the application of such capacity to vaccine safety. Further, proof of concept studies (Coloma et al. 2011) have shown that it is possible for several countries to work together to expand their power to study rare events. Throughout this book, the authors identify numerous and significant public concerns about the safety of vaccines. It is true that some of these concerns are based on wild rumours or specious cultural convictions about health, nature, the history of immunization, “Big Pharma,” and “Big Government.” In other cases, vaccine hesitancy and rejection are rooted in religious or otherwise spiritual certainties that override or challenge medical consensus. Nonetheless, it is often the case that the cultural or religious convictions at the root of vaccine hesitancy are either based on some bona fide legitimate personal experience or concern, or are components of a coherent and meaningful world view. In the

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face of both religious and cultural forms of hesitancy, we now know that it is often counter-productive to simply refute claims. However, this leaves vaccine proponents in a difficult position. At the very least – and perhaps as some contribution towards a resolution of this quandary – we contend that although it is not yet obvious how clinicians, researchers, and public health policymakers might best engage members of the vaccine-hesitant or rejecting communities in conversations, it does seem clear that regardless of the origins of a person’s hesitancy, any conversation about vaccines must begin with a fair and complete description of the development of vaccine safety policies and procedures; that has been the objective of this chapter. Although it is important to treat vaccinehesitant patients, friends, relatives, and neighbours with respect and dignity, the evidence presented above indicates that vaccines have an increasingly impressive safety track record, and while there are known adverse events, these events are sufficiently rare to warrant continued use of vaccines for disease prevention. That said, should the risk, even if very rare, associated with a given vaccine exceed the benefit, then public health policymakers have demonstrated a readiness to stop programs altogether, as was done for smallpox, or to substitute safer vaccines (e.g., OPV for IPV, acellular pertussis for whole cell pertussis) or move from universal- to risk-targeted programs as was done for BCG. Furthermore, recognition and response to adverse events has strengthened surveillance and regulatory processes nationally and globally, and attention to safety continues to be a priority for all stakeholders who support vaccination. NOTES 1 In contrast, wild type paralytic polio was rare, with the last such case reported in 1977, and Canada was declared polio-free in 1994 by the Pan American Health Organization. 2 ClinicalTrials.gov is a service of the U.S. National Institutes of Health; it is a registry and results database of publicly and privately supported clinical studies with human participants conducted around the world. 3 According to its official web site (http://www.ich.org/), the International Conference on Harmonisation of Technical Requirements for Registration of Pharmaceuticals for Human Use (ICH) brings together the regulatory authorities and pharmaceutical industries of Europe, Japan, and the U.S. to discuss scientific and technical aspects of drug registration. Since its inception in 1990, ICH has gradually evolved to respond to the increasingly global face of drug development so that the benefits of international harmonization for better global health can be realized worldwide. ICH’s mission is to achieve greater harmonization to ensure that safe, effective, and

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high-quality medicines are developed and registered in the most resource-efficient manner. 4 The conclusion of the WHO, the EMA, the U.S. FDA, and Health Canada is summarized for the public by Health Canada in a question and answer document titled “Porcine Circovirus found in Rotavirus Vaccines,” last modified 17 August 2010, available at http://www.hc-sc.gc.ca/dhp-mps/brgtherap/activit/fs-fi/rotavirusquestions-eng.php. 5 An adverse event following immunization (AEFI) is any untoward medical occurrence in a vaccinee that follows immunization, although it may not have a causal relationship with the vaccine or the immunization process. 6 These data are “case reports,” which are reports on a person who has experienced one or more adverse events in association with one or more vaccines. The name of the person is removed from the data prior to the provincial and/or national level, but pertinent details about the individual including prior adverse reactions and health status at the time of vaccination are contained in the data, as is information about the vaccine(s) administered, the adverse event, and the outcome. Supplementary medical information relevant to the event and its potential causes, which may have come to light during the course of an investigation, such as while hospitalized or otherwise medically assessed, may also be reported. 7 The Brighton Collaboration is a global research network that sets vaccine safety research standards, conducts collaborative studies, and conducts linkage of large databases. Its aims are to build research capacity and communicate timely and accurate findings. Over the past decade, it has published a series of case definitions for adverse events following immunization, which define levels of certainty that an event reported as a particular condition is actually that condition, and which support standardization of reporting of such events. The official Brighton Collaboration website can be found at https://brightoncollaboration.org/public (accessed 17 January 2017).

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VACCINE POLITICS IN CLINICAL, MEDIA, AND COMMUNITY SETTINGS

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10 “It’s Your Body, Your Decision”: An Anthropological Exploration of HPV Vaccine Hesitancy jennafer roberts and lisa m . mitchell

Introduction Throughout the United States, a potentially lethal war is erupting. It is a war that puts millions of innocent lives in danger and undermines the centuries-long sacred bond between physicians and patients. This is a war between pediatricians and patients and has developed largely because of the anti-vaccination movement. As a public health student at the Johns Hopkins University and a future pediatrician, I am alarmed by the catastrophic consequences this conflict could have on the health of American ­children. Rathi Asaithambi (2012) The controversy in the lay and medical press belie the multitude of perspectives on this issue – socially charged as it crosses sexual issues, religious issues, women/girl’s issues, health‐related politics, federal and provincial politics, big pharmacy, and not least ­money … One must not lose sight of the big picture. The burden of disease, the stalled nature of cervical cancer prevention, and the impact of primary prevention have created not a perfect storm, but a perfect opportunity to galvanize the various stakeholders. What is now needed is to put our shoulders behind the eradication of cervical cancer not as a possibility but as a reality. With the HPV vaccine, the ongoing monitoring, follow‐up, and integration with existing cervical cancer prevention practices will provide a lasting framework for success in the reduction of the burden of cervical cancer. Society of Obstetricians and Gynaecologists of Canada (2007)

Widely regarded as an “incontestable public good” (Leach and Fairhead 2007, 2), vaccinations are associated with modern medicine, technological progress, and cost-effective public health care. Despite decades of high uptake rates in North

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America and the endorsement, particularly for childhood immunization, of national and international health organizations, there is a “significant minority” (Gilmour et al. 2011, S168) of individuals who elect not to have vaccination for themselves or for their children. Indeed, the emergence of terms such as “vaccine hesitancy” and “vaccine refusal” and of studies seeking to identify the causes of this behaviour reflects mounting alarm about the individual and population health implications of this phenomenon. Growing numbers of people are questioning both the need for and the safety of vaccinations, leading some health professionals to express concerns about patients who are not protected from vaccine-preventable diseases, the risk this imposes on the rest of their patients, and the time needed to respond to vaccine-hesitant patients (Kempe et al. 2011). Indeed, in Canada and the United States, some physicians are unwilling to accept non-vaccinated children into their practice (Li 2012; Eisenberg 2011). Health professionals are urged to identify misconceptions and fears, listen respectfully, and to provide accurate information to individuals who are hesitating about vaccination (Diekema 2005; cf. Boucher, chapter 11 in this volume). It is assumed that giving individuals the correct information (about the benefits of vaccines, their safety, the risks of not vaccinating, etc.) in an understandable format will inevitably lead to them to make the responsible choice – that is, to be vaccinated (see Gerend and Magloire 2008; Allen et al. 2009; Caron et al. 2009). In this chapter, we look closely at several examples of young women’s decisions not to be vaccinated against human papillomavirus (HPV). The decisions of these young women both align with and diverge from the ways public health and medical professionals understand informed decision-making. The individuals we discuss take their responsibility to make good decisions about their health seriously. In doing so, they incorporate and evaluate medical information about vaccination, seek medical advice, and carefully consider the risks and benefits of being vaccinated. At the same time, their decisions are deeply shaped by the particular interpretive, social, and financial circumstances of their individual lives. In this regard, our attention to the process of vaccine decision-making is informed by Leach and Fairhead’s (2007) reconceptualization of vaccine hesitancy. Leach and Fairhead move away from the conventional “deficit model” (4) in which vaccine hesitancy is understood to result from an individual’s lack of knowledge, trust, or rationality. While we recognize that the deficit model can aid in understanding some aspects of vaccine hesitancy (see chapter 1 by Bramadat, chapter 3 by Brunk, and chapter 7 by Dubé, Sauvageau, and Gagnon in this volume), we wish to highlight Leach and Fairhead’s (2007) point that a reluctance or unwillingness to utilize this technology can signal an individual’s “active reflection” (39) about how to best to care for herself and others. Their approach highlights that individuals live complex lives and that their decisions are shaped

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by a wide range of experiences and ideas. Significantly, in conceptualizing resistance as active reflection, Leach and Fairhead (2007) encourage us to think about vaccine hesitancy as a positive and engaged kind of thinking. A central question emerging from their approach, then, is not why some individuals fail to get vaccinated, but why vaccination fails to fit with an individual’s desire for health (3). Attending to this question and respecting the multiplicity of answers means accepting that, for some individuals, not being vaccinated may be an informed, well-considered decision, as Conrad Brunk (chapter 3) argues in his discussion of risk perception and value judgments in the context of individuals’ lives. In this chapter, we discuss a small number of women’s decisions to forego vaccination for HPV. Our discussion highlights the ways in which these young women regard their decisions as informed, good decisions that are “right for them” and that demonstrate they are acting responsibly. Decisions to offer and to accept vaccinations are based on assessments of particular health risks. As anthropologists, we approach the topic of risk from a perspective that may differ from how risk is generally viewed by colleagues in the fields of medicine or public health. From a clinical or public health perspective, risk is understood to be a statistically derived measure describing the likelihood of a particular health outcome in a given population. In this paradigm, someone is at risk when, by virtue of some specific behaviour, place of residence, or other factor, she is more likely to experience a particular outcome. For cultural anthropologists, risks may well be measures of association, but they are also socially constructed and diversely meaningful ways of talking about undesirable outcomes (Douglas and Wildavsky 1982). Influenced by Douglas’s concept of risk as a symbolic construct and by social constructionist theories of risk (Lupton 1999; Beck 1992), anthropologists argue that meanings of risk are inseparable from specific social, cultural, religious, and historical contexts. Thus, meanings of “risk” and “being at risk” may vary throughout history, across cultures and religions, and within societies (Lyerly et al. 2009). In addition, assessments of risk are not neutral; within any given social context, they come to be associated with particular values and norms of conduct and morality (Nguyen and Peschard 2003; Petersen 1997). In particular, in the context of HPV vaccination, moral and religious discourses that govern our understandings of (female) sexuality, responsibility, and gender undergird how we think about risk of contracting and spreading HPV and about prevention through vaccination. The HPV Vaccine as a Case Study Our discussion in this chapter focuses on vaccination for human papillomavirus (HPV), the most prevalent sexually transmitted infections (STIs) in the

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world (SOGC 2015a). Approximately 75 per cent of sexually active Canadians will have at least one HPV infection in their lifetimes (SOGC 2015a). HPV is transmitted via skin-to-skin contact and can spread to sexual partners with no manifestation of symptoms; condoms and dental dams may not fully protect against the virus if the genital area is not fully covered (SOGC 2015b). Currently, there are over one hundred different strains (also known as “types”) of the virus, and some strains have been linked to different kinds of genital cancers, including penile, vulvar, anal and cervical cancer (Braun and Phoun 2010). Currently, there are two vaccines that protect against HPV available to Canadians. Gardasil® (Merck & Co., Inc.) was, in 2006, the first cervical cancer vaccine approved by Health Canada for girls and young women between the ages of nine and twenty-six years. In 2010, the vaccine was approved for use in boys and young men between the same ages. Gardasil® protects against four “highrisk” strains of HPV: types 6 and 11, which are associated with genital warts, and types 16 and 18, which are associated with cervical cancer (Merck & Co., Inc. 2010; Merck Frosst Canada Ltd. 2009). The second HPV vaccine available in Canada is CervarixTM (GlaxoSmithKline, Inc.). According to GlaxoSmithKline’s now discontinued Cervarix website, the vaccine protects against HPV types 16 and 18 and is approved for girls and young women between nine and twenty-five years of age (GlaxoSmithKline, Inc. 2011). As a number of authors in this book observe, each Canadian province and territory is responsible for the delivery of immunization programs, including HPV vaccination programs (CIC 2007). In 2007, the federal government allocated $300 million to the HPV Vaccine Trust Fund, a third party trust fund, to launch HPV vaccination programs across the country (CIC 2007). The funding was intended to support the purchase of the vaccine by the provinces and territories to be used in publicly funded programs for girls (CIC 2007). Since 2008, all provinces and territories have introduced HPV vaccination programs for school-aged girls (NACI 2012). HPV vaccination in Canada is voluntary. However, vaccination for women outside of narrowly defined age groups (usually nine to seventeen years of age) is not covered by provincial health care systems, and older girls and women who may want to be vaccinated must pay between $400 and $500 for a three-dose vaccine series. The HPV vaccine is distinctive from other vaccines in several ways. First, since vaccination for the virus is relatively new, it is not yet deeply routinized in the health care of Canadians, and it continues to be the subject of public debate. Second, until recently, vaccination for HPV was gender-specific: that is, it was available to girls and women only and was promoted specifically to protect women’s reproductive health. In public health and medical literature,

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pharmaceutical marketing, and news media about the HPV vaccines, the emphasis have been also exclusively on young women’s risk of developing cervical cancer. While HPV is highly infectious, it is not embedded in a widespread cultural historical narrative of suffering and death, and as such, the HPV vaccine does not have the same association of preventing epidemics and saving millions of lives as do vaccines against measles, polio, and smallpox. Third, the vaccine’s association with an STI and cervical cancer raises long-standing and widespread cultural and religious anxieties about female sexuality, particularly the idea that vaccinating young girls will promote or condone “promiscuous” sexual behaviour (Connell and Hunt 2010; Casper and Carpenter 2008; Carpenter and Casper 2009). While vaccines for what are often called “childhood diseases,” such as measles and mumps, remain strongly tied to cultural and technological narratives of saving the lives of innocent young children, the HPV vaccine is more complex, not least because it forces parents to think about their children in terms of their future or current sexual and reproductive activities. While the aforementioned aspects mark the HPV vaccine as distinctive, vaccination decision-making in general is, at least in Canada, tied to ubiquitous cultural, religious, and moral discourses and meanings of individual responsibility, choice, and uncertainty. In the domain of health, acting responsibly operates as an expression of self-management in which individuals demonstrate to themselves and others their ability to manage health risks by making what are widely regarded as good or informed choices to prevent or reduce risks to their health (Nettleton 1997; Rose and Novas 2005). Vaccinated individuals protect their own health and improve population level health; thus, choosing to be vaccinated and, by extension, choosing to prevent disease demonstrates one’s ability to behave responsibly towards one’s self and others. In Canada, individuals are free to make their own choices about their health. However, making choices that are not approved by health professionals or hesitating about these choices may be regarded as irresponsible behaviour, ill-informed decision-making, or a moral failure on the part of the individual. In many health care contexts, the individual is conceptualized as a consumer who is self-reliant and makes health decisions in ways unencumbered by her socio-economic position and familial and personal commitments (see Clarke 2004; Petersen 2003; Lupton 1995, 1997, 1999). Moreover, the individual is conceptualized as an active decisionmaker who can achieve good health by making good choices (see Petersen 1997; Lupton 1995). Such choices demonstrate an individual’s competence and ability to behave responsibly. Associations between individuals’ decision-making, responsibility, and morality indicate that health choices are not only about mitigating risk; these

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decisions are also about the production of desirable (i.e., responsible) identities, and such discourses and meanings are implicated in how and why individuals make decisions about vaccination. The expectation to be responsible may fall on the individual being vaccinated or, in the case of childhood immunizations, on the parents or guardians of that child. Parents in Canada who decide not to have their children vaccinated against measles, whooping cough, and/or other diseases may be viewed negatively by health practitioners and other parents. Indeed, their claims to be good parents may be called into question. This moral and social censure is particularly intense in the case of childhood immunizations in Canada since they are recommended for the vast majority of infants and children and there are few risk statuses for which physicians would recommend delaying or not vaccinating a child. In the case of adults deciding on vaccination for influenza or hepatitis, individuals are expected to decide based on an assessment of their at-risk status and whether they would pose a risk for others. For example, they are expected to make this decision based on whether they have children, elderly people, or patients in their care. Responsible decisions about vaccination in these instances are as much about maintaining and protecting one’s health as they are about protecting others from illness. Individuals faced with vaccination decisions generally obtain information from a variety of sources including friends, family members, health professionals, public health brochures and, increasingly, websites. Guidance from health professionals and public health websites is intended to enable individuals to make informed choices about health and risk management. In the context of HPV vaccination, the Society of Obstetricians and Gynaecologists of Canada (SOGC), with funding from Merck & Co., Ltd., the pharmaceutical company that manufactures and markets Gardasil, created a national public awareness campaign titled “Spread the Word, Not the Disease” to educate Canadians about managing the risks of HPV (Connell and Hunt 2010). This campaign slogan draws upon concerns regarding herd immunity, suggesting that it is each person’s responsibility to mitigate the risks of contracting and transmitting HPV to others by becoming informed and informing others. The campaign includes brochures, posters, public transportation ads, and a website (http://HPVInfo. ca), which serves as the campaign centrepiece (Davis and Lalonde 2007). The site provides users with information about HPV and vaccination to facilitate informed decision-making by encouraging the viewer to consider vaccination in conjunction with regular Pap tests. Throughout the HPVInfo website, sexually active young women who have had multiple sexual partners and are not in lifelong monogamous relationships (SOGC 2015b) are designated “at risk” of HPV (SOGC 2015b); the SOGC recommends HPV vaccination for these young women in particular.

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Being labelled “at risk” may, for physicians and scientists, denote a relationship between certain characteristics (age, sexual activity, etc.) and the likelihood of a certain medical outcome (in this case, HPV); it also has longstanding troubling cultural connotations in the public imagination. From a cultural anthropological perspective, health information about risks is inescapably shaped by the specific historical, cultural, religious, and political-economic contexts in which it is produced (Lupton 1999). As we noted earlier in this chapter, being defined as “at risk” can indicate an elevated probability of disease or harm, but from an anthropological perspective, it also carries historical and cultural anxieties about particular groups and behaviours. In the case of HPV, the at-risk designation reflects, among other things, long-standing cultural anxieties about women’s sexuality (Braun and Gavey 1999; Carpenter and Casper 2009; Gurevich et al. 2007). In particular, the designation is also salient to how women conceptualize their bodies as vulnerable and their sexual practices as safe or unsafe. Further, being “at risk” carries emotional and social force that may encourage some women to act in ways that are medically and publically sanctioned and thus seen as “responsible.” In the context of HPV, the at-risk category not only raises concerns about the woman’s health and her status as a socially acceptable woman; it also suggests that she poses a risk to others through her sexual practices (i.e., having multiple sexual partners) and that it is her responsibility to mitigate those risks. The SOGC defines sexually active women to be at risk of HPV infection and encourages these women to be vaccinated (SOGC 2015b). At the same time, the organization also “urge[s] users to consider the information presented on [the HPVInfo] site and linked sites in the context of their own values and circumstances and to make personal choices that are well informed and appropriate for each individual” (SOGC 2015b). This disclaimer reflects an interesting tension between the SOGC’s recommendation of the vaccine and its emphasis on personal choice and autonomy in health care decisions. This tension means that some women who may well fit the SOGC criteria for at-risk status decide not to be vaccinated and that considerations other than their risk status may be particularly determinative of their vaccination decision.

Young Women’s Decisions about HPV Vaccination The interview material included in this paper is drawn from Jennafer Roberts’ (2012) Master of Arts research project, a qualitative anthropological exploration of young women’s decisions about HPV vaccination. The purpose of the research was to explore two questions: (1) How are young women deciding whether or not to be vaccinated against HPV, and (2) how and to what extent

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are young women engaging with specific ideas about at-risk women that are part of public health discourses about HPV? Between November 2010 and April 2011, participants were recruited through two health clinics in Victoria, British Columbia, and through flyers posted on the University of Victoria campus based on three criteria: the participant (1) self-identified as a woman, (2) was between the ages of nineteen and twenty-six, and (3) had heard of and was considering HPV vaccination. Thirteen women, all university students, participated; seven were undergraduates, three were master’s students, and three were PhD students. Of the thirteen interviewed, three participants described themselves as wanting to be vaccinated against HPV. One participant had already been vaccinated, though she still had concerns about the safety of the vaccine, and one had begun the process of being vaccinated. Of the three participants wanting to be vaccinated, one was not hesitant about being vaccinated and identified her trust in rigorous scientific research on the safety and efficacy vaccinations as the reason for her decision. All of the women said they had engaged in sexual activities and relationships with men. Six of the women were in long-term monogamous relationships with male partners. Two semi-structured interviews were conducted with each participant. In the first interview, women were invited to talk about their vaccination decisions. The second interview explored how the women engaged with health information about HPV vaccination, specifically through the SOGC educational HPVInfo website, which is aimed at adults, teens, parents, and health professionals. The website was chosen as an example of health and medical information disseminated to the public to enable women to make responsible, informed decisions about HPV vaccination. Our discussion and the interview material presented here reflect the website’s appearance and information presented in 2010. With such a small convenience sample, we are not attempting to generalize our findings to the broader population of all Canadian young women making decisions about the HPV vaccination, as this would require a research approach similar to what Guay, Dubé, and Laberge present in chapter 6 in this volume. However, the value of multiple interviews with a small number of women was the ability to explore in depth what they wished to say about the vaccine and their beliefs, concerns, and anxieties (see Bernard 2006; Crouch and McKenzie 2006). In this chapter, we focus on vaccine hesitancy and present data from interviews with four young women from the study who were hesitant or decided against vaccination. We draw attention to the ways that these women engaged with and evaluated the HPVInfo website as part of their decision-making. Our analysis shows that the women’s decision-making overlapped with and diverged from some of the central messages in public health discourses regarding informed

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health decisions. Rather than viewing their divergent perspectives as irrational or misinformed, we seek to understand why these decisions may be meaningful to the young women and how their decisions influence their desire to maintain good health. In this chapter, we argue that these young women viewed their hesitancy and rejection of the HPV vaccine as part of being responsible, sexually active young women concerned with protecting their reproductive health.

Ace Ace described herself as a twenty-one-year-old undergraduate who was sexually active and who engaged in sexual activities with men. Ace’s uncertainty about HPV vaccination stems in part from her overall approach to taking care of her body: “I’m very hesitant to put medications in my body to begin with and, um, I think that that plays a role in it,” she said. Ace believed the vaccine might prevent cervical cancer, but she raised questions about the inevitable and direct causal relationship between HPV and cervical cancer. She wondered to what extent getting cervical cancer is influenced by other factors, such as family history, weak immune systems, poverty, and lack of access to healthy food: I think that this vaccine really is most helpful for people who’re predisposed to have cancer or are in environments where there [are] a lot of carcinogens … people, who are, you know, [in] places with a lot of pollution or, like, they’re living under telephone lines or – there’s a lot of people in our family who have cancer, people who are predisposed to have weaker immune systems, people, who’re already sick … and, I think that, I mean, this is brand new.

While these factors do not have a causal link to cervical cancer, Ace’s thinking both indicates her awareness of the scientific view that cancer causation is often multifactorial and challenges the scientific proof for HPV as the cause of cervical cancer. At the same time, Ace also echoed advice often found in Canadian media, including magazines and newspapers, that cancer can be prevented through individual choice and control (see Sato 2012; Musso and Wakefield 2009). Specifically, Ace believed that if people were able to exercise and eat healthy food and were “at their optimum level of health,” rates of HPV turning into cervical cancer would be very low: I think that if a person’s immune system is adequate, it probably should be able to fight off the virus just the same as the flu or anything else. I think that it’s an advocation for regular exercise, eating healthy, those kinds of things and if the

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government should be pouring money into anything, it should be subsidies for healthy food.

Much of her discussion about HPV vaccination related to the inaccessibility of the vaccine for people with low to no income. When asked how she would respond if a doctor recommended HPV vaccination to her, she stated, Yeah, they have actually and I said, okay, are you gonna pay for it? And that was, … at the end of the day, everything considered, I don’t have six hundred dollars to pay for a vaccine and I wouldn’t have a hundred and twenty, I – I wouldn’t have eighty, if they wanted forty to twenty-five, I could afford that … I’d say the average person my age would make between eight and twelve dollars an hour, so … basically, I would be willing to pay whatever I could get paid for three hours of work for a vaccine.

Ace’s understanding of risk centred on her ability to take care of herself, including her ability to pay rent and buy groceries, which she would be unable to do if she purchased the vaccine. While Ace identified everyone as being at some risk of HPV, she could not justify the costs of the HPV vaccine by the risk of infection: “Everyone is at risk in a way, but what I’m saying is that when it comes to six hundred dollars, which is not eating for like three months for me, I’d rather have the food and take my chances.” She asserted that it is unfair to have to pay for a vaccine. Moreover, she thought the vaccine should be government subsidized to make it accessible to all “at-risk” people, not just those who had sufficient disposable income. She stated, I think that it’s not really fair to ask for that amount of money from someone our age, even if it is technically worth it. Like – and – at the same time, the price that you sell a drug for isn’t the cost that it takes to make it … I think the government should just buy it from the company at that rate and then be able to administer it because … I think that if people need it and it’s gonna help our health care system, the government should be making … the investment because it’s the government, Medicare, that’s gonna be looking after us if we get cancer, so the government should be making the investment, not us …

Ace’s frustration about the high cost of the vaccine reflects some public health concerns regarding financial constraints as barriers to vaccination uptake (see Conroy et al. 2009). Ace did not see her vaccine decision in terms of individual choice and constraint only; rather, she considered vaccination to be part of a

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much broader political-economic context, and she believed, the Canadian government should be supporting citizens to maintain good health. Perhaps not surprisingly, then, Ace regarded public awareness campaigns that promote HPV vaccination with suspicion. She described the promotion of the vaccine as a “fundraising activity” for a product that has less to do with the well-being of people than it does with financial gain for corporations and medical professionals: I think that it’s too much advertising involved. I think the more advertising you associate with the vaccine … the least effective it truly is and there’s a lot of advertising for HPV. I think it makes it less credible … Like, that’s my biggest concern … that’s my biggest question – if it’s so great, why are you pushing it? If it’s that good, people would just say, yes, I need it.

Ace had had, what she considered, frustrating experiences with doctors whom she described as having too much authority to determine what is in women’s best interests regarding their health. As part of her suspicion of the authority surrounding doctors, she was very critical of the financial incentives she believed led physicians to promote the products of pharmaceutical corporations. As others discuss in this book (e.g., see chapter 9 by Naus, Law, and Rinfret), the opportunities for drug companies to manipulate physicians are very limited, and the monitoring of the interactions between doctors and corporations are often highly scrutinized. Nonetheless, in this case, Ace’s perception clearly has a major impact on her approach to HPV. Ace opened the second interview by sharing her thoughts about the authority of medical professionals and by discussing a recent experience she had had with a doctor: I just feel like commenting now, I feel that, in our society, doctors are given a little bit too much authority and that they sometimes feel that they’re above other people and I think that doctors should be rigorously told that, yes, you know more about the human body than other people, but you don’t know more about each human’s body than them … I’ve just encountered that again since our last interview where the doctor seems to think that they know everything about you and they know everything that’s best for you.

In the instance that Ace described, it was clear that her frustration was in part derived from her view that the doctor did not know or understand her specific circumstances, including her ideas about her body and health, whether or not she could afford the vaccine, and whether she considered herself to be

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“at risk.” When discussing the HPVInfo website, Ace was troubled by the categorization of at-risk women. It should be … it’s a fact that the [fewer] sexual partners you have, the lower risk you’ll be at [for that] kind of thing – that should be there, but not limiting the number of partners because girls don’t try to be promiscuous, we don’t. We go out with somebody and it doesn’t work, so we have to move on. We’re not trying to be promiscuous … I got called promiscuous a little while ago and I was like, um, no! I’m not promiscuous, I just date a lot of assholes and then it doesn’t work out … I think that the lack of monogamy is a problem with society, not with women, and that’s what it kind of suggests. It really does actually because this website is made for women.

When asked if there might be ways that doctors could provide information about the vaccine without the presumption of knowing what is best for the patient, her response emphasizes the value of attending to what she identifies as each person’s “personal probability” or risk: Yeah, yeah, there’s a lot of different ways that it should be, like, listen this could happen … they should say, this is what your personal probability is, they should make sure the person understands what probability means … and then [they] should be breaking it down with them … this is what the cost is and, like, [they should be] literally walking them through the formula … This would be this much of your money, this is what your budget is, this is how much fun money you’d have to give up to do this. This is the risk that it is to you, so if you’d like to do it, I recommend it for everyone, but if you’d like to do it, this is … the number value for you and then, okay, this is where it is for the average person, your risk versus the value the vaccine is to you, like how much it’s gonna cost you, is this number. Now you can choose whether or not to do it.

While financial barriers influenced how Ace viewed the HPV vaccine, additional factors contributed to her hesitancy about being vaccinated. She understood that sexual activities with multiple partners were regarded as “risky.” Yet, she regarded with frustration and resented what she perceived as the implication that she is promiscuous (which tacitly suggests immorality) and thus “at risk” and in need of the vaccine, stating that “girls don’t try to be promiscuous.” However, Ace recognized that there were benefits to the HPV vaccine, which could potentially mitigate the risks of women developing cervical cancer, particularly when there is a predisposition to cancer, or as she puts it, “[if] you have a lot of cancer in your genes.” What Ace identified as “personal probability”

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encompassed not only the idea of being at risk or a woman’s likelihood of getting cancer but also a woman’s financial circumstances. Ace’s interviews demonstrate that she regards medical information not as objective knowledge but as information that is situated within and shaped by cultural and political ideas and practices, including perceived financial incentives for physicians and associations between sexual risk and a particular view of women’s sexual activities. In her insistence that medical knowledge must be understood against the backdrop of cultural and political domains, Ace questions medical professionals’ authority to determine what is in each individual’s best interests. Although Ace did not agree with the basic scientific knowledge related to HPV, for her, responsible, informed decisions are not predicated solely on the “at-risk” category of women (i.e., sexually active women who are not in a monogamous relationship); these decisions also entail consideration of each individual’s circumstances, experiences, and needs.

Breanne Breanne described herself as a twenty-three-year-old social sciences master’s student. Breanne stressed the importance of making informed decisions about vaccination, stating that “it’s your body, your decision.” Describing herself as “hesitant” about whether or not to be vaccinated, she questioned both the safety of the vaccine and whether she was at risk for HPV. Her reticence stemmed in part from her concerns about unknown and potentially harmful side effects and long-term effects of the vaccine. Breanne said this scepticism was not new to her; she was raised in a family whom she describes as wary of the health risks and side effects of vaccines. In addition, her attempt to make a well-thought-out decision about vaccination centred on her ability to ascertain how the vaccine may protect or harm her health. Breanne’s perception of media coverage about the negative side effects of medications served to legitimate her doubts about the safety of the vaccine, by demonstrating that medications, including vaccines, assumed to be safe could, indeed, cause considerable harm: … I don’t know, I guess, just, my entire family, we’re just kind of sceptical of the vaccine and – I don’t know, I’ve seen and read a lot of stuff especially with the whole H1N1 scare, um, and looking back … there [were] all these people, who got, um, psychological damage and people, who were, I don’t know, paralysed and stuff like that … Like, do I take the vaccine and potentially protect myself from HPV? Or do I take it and in twenty years, I have some weird thing that they’re like, oh yeah, in the 2000s, all these girls took Gardasil and we didn’t know what

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was gonna happen and now there’s thousands of girls, who have this condition, or whatever, you know?

Breanne’s references to a causal link between vaccines, paralysis, and psychological damage are not supported by medical research. Nonetheless, Breanne remained concerned about the potential damage a vaccine might pose in the future. Indeed, the historical incidences of seemingly safe pharmaceuticals causing considerable harm (see chapter 4 by Roy and chapter 5 by MacDougal and Monnais in this volume; see also Moore, Psaty, and Furberg 1998; Waxman 2005; Dieppe, Ebrahim, and Jüni 2004; Botting 2002) remind us that she is not merely imagining these possibilities. In this instance, in striving to make an informed decision that reflected her desire to maintain good health, Breanne took seriously the need for scientific evidence that substantiates the long-term safety of Gardasil®. However, given Breanne’s understanding of negative health effects of other vaccines, it is unclear what type of scientific evidence she would trust (see chapter 1 by Bramadat in this volume). During one interview, Breanne described what she identified as “pressure” from health care professionals to be vaccinated against HPV, despite indicating that she did not want to be vaccinated and did not consider herself to be at risk of contracting HPV. She recalled first learning about the vaccine at her yearly physical appointment, during which her doctor recommended she be vaccinated: [At] my yearly physical, um, my doctor just would say, you know, have you heard about the HPV vaccine and I just said yeah, you know, on TV or whatever and I think, … my first doctor that I had, she asked me if I wanted it and I said no because at the time I was just with my one boyfriend … we’d been with each other for four years, we were both each other’s firsts … we weren’t planning on being with other people. So, in my head, I was like, it doesn’t make sense for me to get it. I think my first doctor, she wrote me a prescription anyways and just said, like, well if you change your mind, here’s the prescription and I just remember thinking, like, I don’t know why she did that …

Breanne’s experience calls attention to the subtleties of interactions between health practitioners and patients. The health practitioner may have perceived writing the prescription for Breanne as a routine or benign encounter and as, indeed, a helpful gesture. However, Breanne viewed the action as inappropriate, since she indicated her preference not to be vaccinated. Thus, for Breanne, the written prescription came to represent a form of pressure to be vaccinated even after she had indicated that she had decided against it. While Breanne did

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not feel as though she had enough information about the benefits and risks of the vaccine, she was reticent to seek information from medical professionals because of her experience: “I’ve always been, um, hesitant towards even taking it so I haven’t … taken that step to find out more about it, because I think – just because of my couple of experiences of, like, being pressured into it.” On their website, the SOGC notes that women are at risk of contracting HPV if they are sexually active and not in a monogamous relationship. The medical recommendation is that at-risk women should be vaccinated against HPV (see SOGC 2015a). Breanne’s monogamous relationship with her boyfriend ended, and since that time, she had had multiple sexual partners, thus fitting the SOGC definition of “at risk.” However, Breanne did not identify herself as at risk of HPV, because she engaged in what she considered sanctioned safe sex practices, including condom use and STI testing, not realizing these practices would not prevent HPV infection. Moreover, she identified her serial monogamous relationships (as opposed to casual sexual partners) as indicators of safe sex and thus as lowering her risk of HPV, not recognizing the risk of HPV infection regardless of relationship type. Breanne’s understanding of the at-risk category of women highlights a tension between public health representations of HPV risk and how women experience and identify themselves. Breanne believed that there are certain “actions” that are associated with being at risk of HPV, suggesting that this kind of risk can be controlled through an individual’s behaviour: If you’re at risk for getting HPV then there [are] also actions that have to be going along with that, right, like, you’re not necessarily doing something … I don’t know, [for being] at risk for contracting the flu virus, like, you’re not necessarily doing something, like, you could just be out in the world and you can … be at risk of getting the flu … I guess in my head – and this may be horrible to say – but, I just feel like, someone who is at risk would probably be having more partners, um, and I’m not.

Her statement suggests that responsible sexual practices mitigate the risk of contracting HPV and thus the need for HPV vaccination by virtue of engaging in “safe” activities. In this regard, the suggestion of being at risk of HPV implies engaging in unsafe sexual activities and thus irresponsible behaviour. Breanne was critical of public health and marketing campaigns about HPV vaccination that have specifically targeted women. She connected the way women are targeted for vaccination to the expectation that women ought to be the managers of reproductive and sexual health risks in heterosexual relationships:

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I feel like the dichotomy between men and women … it’s like a whole different ball game for women and their reproductive health and sexuality. Um, which obviously is, you know, part of the society that we’re in, it’s patriarchal and woman are supposed to be passive and that whole thing. So I think even when it comes to reproductive health, it’s very different for me and how they would protect themselves … Do guys know that there’s a vaccine for guys? Like, there [are] no commercials about it, which there [are] tonnes of for women. So, like, why isn’t there for guys if there is a vaccine. And if it is supposed to be, you know, an equal thing within sexual reproduction, like, men and women protecting themselves … why wouldn’t there be commercials for guys?

While critical of how young women had been targeted for HPV vaccination, Breanne regarded the vaccine as a medical technology to protect women’s reproductive health. Like Ace, Breanne felt the vaccine would potentially reduce the possibility of developing cervical cancer: I guess it is a concern that if I contracted something – if this could help me potentially not get cervical cancer then that’s – that’s quite a huge thing and like I said before … I’m kind of against vaccines, but I do know that there are – obviously there [are] vaccines that are very helpful and beneficial. Um, so if this is one of those, then I think … it would be a good thing for me to get.

Nonetheless, the potential risks of the vaccine itself, as a relatively new medical technology, loomed large in her discussion. Moreover, she understood and justified her unease with vaccination for HPV by drawing upon examples of the negative side effects of other medications. While the SOGC promotes HPV vaccination as a tool for preventing illness, the vaccine occupied a dual role of positive and negative potentials for Breanne: HPV vaccination could potentially enable her to control her risk of cervical cancer, yet it could also cause her unknown and considerable harm in the future. In her desire to achieve what was her perception of good health and make an informed decision, Breanne drew upon the medical language of evidence-based research to support her hesitancy about HPV vaccination, noting the lack of long-term research regarding safety and efficacy. By emphasizing her safe sex practices, Breanne also resisted the SOGC’s recommendation of vaccination for women whose sexual practice puts them and others at risk of HPV. In considering why she might be vaccinated, she renegotiated this risk category to place emphasis not on her sexuality and the risks of HPV as an STI but on her reproductive health and the benefits of vaccination against cervical cancer. In this way, Breanne drew attention away from the possible stigma of engaging in what the SOGC identifies as risky (and thus

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potentially irresponsible) sexual practices and towards the potentially less contentious issue of preventing cervical cancer.

Isabelle Isabelle was a twenty-three-year-old undergraduate who was undecided about whether or not to be vaccinated. Like Breanne, she considered vaccination because it might reduce her risk of developing cervical cancer. However, she also worried about the long-term effects of the vaccine, particularly the effects on her reproductive health: The only thing that’s holding me back on it, I think, [is] that we don’t know what’s gonna happen when I go through menopause or like, anything else. Um, just not knowing the longer-term effects or the long-term risks or anything like that is what holds me back.

Isabelle sought to make what she identified as an informed decision by reading articles, brochures, journals, and blogs on the Internet and speaking to doctors about the vaccine. The range of material she consulted illustrates that making an informed decision can include much more than simply seeking information from physicians or other health practitioners. For Isabelle, other sources of expertise included women who had already gone through the decision-making process and advocated either for or against the vaccine. Isabelle’s attempts to make an informed decision by seeking expert advice about the vaccine indicates her desire to make what she considered a responsible decision. While she sought information from medical practitioners, discussions with friends and family members whose perspectives and experiences she trusted were also important to Isabelle’s consideration of the vaccine. Seeking the advice and support of those in her social network was an integral aspect of Isabelle’s efforts to make what she considered a good decision about the vaccine. Isabelle’s mother encouraged her and her sister to be vaccinated; Isabelle characterized this encouragement as “generally motherly caring,” not unlike recommendations her mother has made about other health issues, such as protecting herself from skin cancer. Several of Isabelle’s girlfriends were also undecided about being vaccinated due to concerns about potential long-term effects. She highlighted her friends’ sexual and reproductive health in discussing why she was considering the vaccine. … I have a friend who actually has HPV and it has really radically changed her whole, like, everything … she gets a lot of break outs and … it really influences

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like her quality of life within that week or whatever that she has them and … she has a boyfriend and it’s – I don’t think she got it from him, but … now has it or something like that, and anyways, their relationship doesn’t appear to me to be overly healthy, but at the same time I get the impression that she doesn’t want to end it because then she has to go out and disclose to people, like, I have HPV, before doing anything and, she doesn’t like talk about it at all, which is totally fair.

Clearly aware of how contracting HPV may affect one’s life, Isabelle did not consider herself at high risk for HPV because she did not identify herself as “a really promiscuous person” or putting herself “in necessarily risky situations.” In ways similar to the SOCG’s categorization of women at risk, Isabelle also acknowledged that all sexually active people are at risk: If somebody says that sentence, that you’re at risk of getting HPV, I would kind of think, yeah, … so are all of my friends … so is everybody that I know that’s sexual, like, everybody’s at risk of getting HPV if they’re, you know, engaging in that sort of activity.

Isabelle asserted that, in general, because all sexually active people are at risk of HPV, they need to engage in safe sex to mitigate these risks. Yet, when discussing the possible benefits of vaccination, Isabelle prioritized the need to protect her reproductive health, rather than her sexual health, from harm. As she saw it, safe sex practices lowered the risk of HPV. She conceptualized the vaccine as a means by which she and other women could protect themselves from developing cervical cancer rather than mitigating the spread of HPV. While exploring the HPVInfo website, Isabelle explained that it targeted women because as far as HPV goes, there’s not, like, an enforced sort of role that it is for women, but it’s sort of like an assumed because it’s more prominent [as a] cause [of] cervical cancer, … so therefore women are the ones with cervixes, so it makes sense that they are the ones that should be responsible in this regard.

For Isabelle, the decision about whether or not to be vaccinated was inseparable from her sense of herself as a woman wanting to protect herself, rather than others, from harm. For Isabelle, HPV vaccines were intended exclusively for women since they offered the possibility of preventing cervical cancer. As such, in her opinion, not only was the vaccine itself explicitly gendered – “a woman’s vaccine” – so, too, was the responsibility to be vaccinated. Yet, Isabelle’s

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consideration of HPV vaccination reveals the vaccine’s precarious position of conceivably mitigating the risks of cervical cancer while creating risks in the form of unknown future side effects for her. While she recognized somewhat fatalistically that all sexually active people are at risk of HPV, both the possibility of developing cervical cancer and the potential side effects of the vaccine were compelling concerns for Isabelle.

Lynn Lynn was an undergraduate in her twenties, experiencing what she referred to as “musculoskeletal and endocrine disorders” that sometimes compromised her ability to attend work and school. These disorders were central to her thoughts and hesitations about HPV vaccination. Considering HPV vaccination after learning that a previous sexual partner had contracted the disease, Lynn began to reflect on possible health risks she associated with having multiple sexual partners: … I hadn’t really had more than one partner until I moved here and then the first person that I ended up being with ended up having HPV, so I was kind of, like, scared about this whole new world of, like, actually dating and, like, having more partners and … of like those statistical probabilit[ies] that I would actually end up with something like an STD [sexually transmitted disease].

As Lynn discussed her concerns about contracting HPV and the potential benefits of being vaccinated, she remarked, When you have sex with somebody, you’re having sex with every single person they’ve ever had sex with and so on … I could be just a little, like, more sensitive to it than other people just ’cause I have had a partner, who had HPV … and I found out afterwards … it was a scary kind of moment, yeah. Even still, every time I get a pap test, it’s kind of like a – like, was it just dormant until now kind of thing. So … I’m hopefully free from it, but it’s still kind of a scary thing to think that I have been exposed to it even if I didn’t catch it.

Lynn went on to explain that there were situational differences among those who should or should not consider HPV vaccination. She described herself as having “inherently less partners” than some of her friends and as such, she considered the possibility of contracting HPV to be less of a concern than it was for her friends with more sexual partners. Both Lynn and the SOGC associate increased risk of HPV to an increased number of sexual partners.

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Nonetheless, when discussing the HPVInfo website, she identified the SOGC’s prevention strategies in the website’s “Adult” section as “a little outdated”; she stated, It’s saying, like, limited number of partners, that’s not something a lot of people are gonna be willing to do. Well like I said, it’s good information but … I mean unless you’re gonna wear, like a rubber suit that completely – like, there’s not really anything you can do.

Lynn sought information, including news, journal articles, and medical literature from health clinics, in order to make an informed decision, but she found the information provided to be incomplete. In particular, she was concerned that the vaccine had not undergone adequate long-term testing to determine any potential side effects, and she was sceptical of its effectiveness as a preventative measure for contracting HPV and developing cervical cancer: The statistics, I think, are a little skewed … it only protects against two different strains of HPV, whereas there’s a lot of different strains and … they don’t protect against all the ones that cause cervical cancer … I was reading something, I can’t remember where, but it was [about] incidences of cervical cancer going down anyways because of better access to things like Pap smears, so even in the future, if they say, look at how the percents are, the vaccine’s working, you can’t really rely on that because they’re already going down in the first place.

Lynn identified seeking advice and information from medical professionals about HPV vaccination as helpful experiences. However, as both Breanne and Ace did, Lynn described an uncomfortable encounter with a medical professional who had recommended vaccination to her. She had visited a physician at a walk-in clinic with the intent of seeking a note excusing her absence from work because of her musculoskeletal and endocrine disorders. However, the physician took her visit as an opportunity to recommend vaccination for HPV: It was a walk-in, and he was a more elderly gentleman and … he was talking about how he made all of his daughters get it and I zoned out cause it was so long, but it was this huge rant about how the HPV vaccine was so awesome and I should get it and it was not related at all to what I’d been there to see him for and … like, I said, I’ll think about it, but I’m not really sure. So, it was kind of really sort of invasive how he went in there and gave me this huge speech.

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As with Breanne’s description of being “pressured” into choosing to be vaccinated, Lynn’s discussion of her conversation with the physician, while uncomfortable and inappropriate from her perspective, may have been a routine and mundane encounter for the physician. Dissatisfied with the information given by that physician, Lynn emphasized the importance of an element usually lacking from public health expectations about informed decisionmaking – women’s experiences and understandings of their particular bodies and health circumstances. For Lynn, this bodily knowledge was key to being “informed”: Um, well, being informed – there [are] a lot of women that I know, who … don’t really know that much about … the way their bodies work. Um, as part of when I was trying to find natural ways to kind of avoid pregnancy … I kind of learned exactly what my body does when.

In her case, Lynn was especially concerned that the HPV vaccine might exacerbate her existing disorders, which she stated had not responded well to what she identified as “standard medicine,” including other vaccines: I don’t know enough about it or what … the long-term effects are and I’ve found for me, … for the [musculoskeletal disorder] especially, if I’m staying more natural and away from chemicals, like, man-made chemicals, I tend to be healthier, so the idea of injecting a bunch of chemicals into my body kind of makes me wonder if it would set off my [musculoskeletal disorder]. So, that’s always a huge worry for me ’cause if I can’t work and I’m not in school, then I can’t afford rent.

Lynn’s view of a good decision regarding the vaccination was also shaped by her concerns that a decline in her health would threaten her ability to actively participate in school and work, both integral to her sense of self and well-being. In addition, while Lynn had a previous sexual partner who had contracted HPV and exposed her to the virus, she was hesitant to be vaccinated. Although Lynn had already been exposed to HPV, she still considered herself to be at a lower risk of contracting HPV because she had fewer sexual partners than her friends had. Lynn was critical of the SOGC’s use of the term “limited” when it came to sexual partners and of its statement of lifelong monogamy as a realistic risk prevention strategy. She labelled this description as “outdated” and not reflective of young adults’ sexual practices. Her sardonic statement, “unless you’re gonna wear a rubber suit there’s not really anything you can do,” suggests that there is a certain amount of risk that she considers acceptable and inherent in being sexually active.

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Discussion The women discussed in this chapter took seriously the need to make good decisions about vaccination, and each sought to make what she considered to be informed choices. However, it is clearly evident from the interviews that more was at stake for the women than just being informed about risks of HPV and the potential benefits of the vaccine. We argue that the women’s decisions about being vaccinated were not just about making an informed choice; they were also instances of identity production, in which these young women sought to protect themselves from harm and to be responsible while being sexual active. These young women’s considerations about HPV vaccination both align with and diverge from the SOGC’s descriptions of sexual risk, responsibility, and informed choice. Similar to the SOGC’s view that educational information about HPV and vaccination will help inform Canadians, these women spoke about the need for information that would enable them to weigh the benefits of vaccination against the risks of HPV. The women did not unequivocally reject either scientific evidence or conventional biomedical information. Ace and Lynn did question the strength of an association between getting HPV and getting cervical cancer, but it is also the case that while all cervical cancer is caused by HPV, many HPV infections do not cause cancer (Wailoo et al. 2010). Breanne and Lynn accepted that the vaccine could reduce their chances of getting cervical cancer. Each young woman spoke about consulting with medical professionals to determine if vaccination was right for them. Moreover, they indicated the need for more information that identified the pros and cons of vaccination, including, as Breanne, Lynn, and Isabelle identified, long-term research on the vaccine’s potential side effects. The women did not passively accept the available medical information about the vaccine or about HPV, however. Rather, all of the women interviewed, including those who chose to be vaccinated, evaluated this information in terms of whether it would enable them to make a decision about the vaccine that was right for them. Personalizing the information in this way clearly echoes the SOGC’s sentiment that informed decisions should be made in consideration of individuals’ circumstances and values. Evident in the interviews with these women was their desire to make vaccination decisions which are both right for them and free from intervention, coercion, or pressure from others. Echoing the SOGC’s instruction that HPV vaccination decisions should be “personal choices,” the women engaged with cultural priorities of individual autonomy and self-determination. Their endeavours to make informed decisions clearly indicate the cultural and moral weight placed on being informed as a demonstration of one’s responsibility

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towards oneself, not simply as finding relevant, authoritative, and accurate information. For young Canadian women today, this emphasis on personalized decisions made by the individual reflects a widespread cultural discourse on the importance of individual choice, the cultivation of knowledge of the self, and the individual being the expert on one’s self. This emphasis on the individual also shaped how these women conceptualized and experienced risk through their decisions. Both public health professionals and the women in this study mobilized the language of statistics and risk in discussing the vaccine. Risk is often conceptualized in public health through an epidemiological and statistical lens (Gifford 1986; Boholm 2003) as an indicator of population risk. Yet, as Lupton (1995) asserts, “people do not conceptualize risk in terms of objective statistical probabilities but rather make subjective judgments based on ontological and cosmological assumptions” (85; see also Brunk, chapter 3 in this volume). In the context of their decisions about HPV vaccination, the young women produced individualistic conceptions of risk informed by their previous health experiences and the kinds of sexual relationships and practices they engaged in. Three of the women – Breanne, Ace, and Lynn – were appropriately identified by medical professionals as at risk of HPV based on their age and sexual practices. However, the three women categorized their sexual practices as safe and responsible and, thus, as a means of mitigating the risks of HPV. Ace and Lynn, for example, drew upon the medical language of risk and statistics to produce individualized risk assessments as a means of determining if vaccination was right for them. Ace identified the need for doctors to consider the “personal probability” of risk. Lynn questioned the reliability of statistics in determining her particular risk of HPV, and she discussed the probability of contracting an STI when considering the benefits and disadvantages of vaccination. For these young women, making good decisions about whether or not to be vaccinated necessitated individualized risk assessments. While the women’s decision-making certainly privileges the personal and the individual, it is important to note that their deliberations were also shaped by their perspectives on larger political, moral, and economic processes. Indeed, the social context of receiving information about vaccination figured prominently in the women’s decisions not to vaccinate. For instance, these well-educated young women did not assume that medical experts, such as the SOGC and family physicians, were simply providing objective medical knowledge. Rather, they saw medical professionals as individuals, who, like themselves, are influenced by the cultural, economic, and moral circumstances that shape our understandings of HPV vaccination. Ace’s comments about incentives for health professionals and about pharmaceutical profits made through vaccination promotion

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highlight how public perceptions of these issues can shape vaccine decisionmaking. Moreover, not only did all four of the women suggest that the cost of the vaccine was prohibitive but also that cost detracted from the value of the vaccine. The fact that these young women sought information from a variety of non-medical sources and that they regarded this information as relevant for informed decision-making speaks to their views that medical science can offer only a contingent and partial perspective on their health. Through the HPVInfo site, the SOGC informs women that the HPV virus can be spread with no manifestation of symptoms; it identifies that all sexual activity, but, most pertinently, numerous sexual partners, creates risk for contracting and transmitting the virus (SOGC 2015b). The website thus provides women with information about the risks, to both themselves and their partners, of HPV, suggesting that their sexual practices may put them and others at risk of contracting the virus and developing secondary illnesses, such as genital warts and cervical cancer. The SOGC’s campaign slogan, “Spread the Word, Not the Disease,” specifically evokes the idea that vaccination reduces the HPV risk not only for the individual but also for her sexual partners. This campaign evokes widespread cultural meanings and practices that continue to place more responsibility on women than men to manage their reproductive and sexual health (e.g., see Braun and Gavey 1999). However, not one of the four women identified her sexual practices as being particularly risky, even after one was infected with HPV. Rather, when presented with information from the HPVInfo website about preventing the spread of the virus, the women suggested that their safe sex practices mitigated the risks of the virus and questioned the association between their sexual activities and HPV. Moreover, none of the four women identified protecting their sexual partners as a reason to be vaccinated; nor did any of the women discuss the decision to be vaccinated as their responsibility for maintaining “herd immunity” or for lowering incidences of HPV in the general population. Their deliberations did not generally include the meanings attached to other vaccines, such as those for measles, mumps, and rubella and influenza, about a collective responsibility to protect oneself and others from harm. For these young women, vaccination for HPV was regarded principally as a means of protecting oneself from cervical cancer rather than as a response to risky sexual practices. As a result, their decision-making did not reflect the SOGC’s concern with mitigating the spread of HPV. However, concerns about the safety and the cost of the HPV vaccine, alongside their perceptions of how it was offered to them, led the women to decide not to be vaccinated. These case studies demonstrate that the decision to be vaccinated is not ­simple. Vaccination against diseases such as HPV is conceptualized as granting

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at-risk individuals the semblance of control in managing such diseases through the choice to be vaccinated. Thus, to many people, choosing to be vaccinated seems to be a good – or possibly even an inevitable – decision and an indicator of responsibility. The women in the case studies worked to carve out responsible identities by drawing on the language of informed decision-making, carefully considering their circumstances, and using medical information to enable these decisions; they also attempted to carefully weigh the risks and benefits of HPV vaccination, stating repeatedly that they needed more evidence-based research to understand the long-term effects of the vaccine. While the vaccine offered them the security of being protected against cervical cancer, vaccination was also considered a risk itself, one that these women were hesitant to take. Thus, while HPV vaccination offered the possibility of controlling the risk of cervical cancer, it also, for these women, presented a risk to their health, a fact that complicated their desire to achieve and maintain what they consider good health. REFERENCES Allen, J.D., A.P. Mohllajee, R.C. Shelton, M.K.D. Othus, H.B. Fontenot, and R. Hanna. 2009. “Stage of Adoption of the Human Papillomavirus Vaccine among College Women.” Preventive Medicine 48 (5): 420–5. http://dx.doi.org/10.1016/j. ypmed.2008.12.005. Asaithambi, R. 2012. “Time to Get Tough on Vaccine Refusal.” Baltimore Sun. 11 April. http://articles.baltimoresun.com/2012-04-11/news/bs-ed-vaccines-20120411_1_ vaccine-refusal-philosophical-exemptions-unvaccinated-children. Beck, U. 1992. Risk Society: Towards a New Modernity. London: Sage Publications. Bernard, H.R. 2006. Research Methods in Anthropology. Lanham, MD: AltaMira Press. Boholm, Å. 2003. “The Cultural Nature of Risk: Can There Be an Anthropology of Uncertainty?” Ethnos 68 (2): 159–78. http://dx.doi.org/10.1080/0014184032000097722. Botting, J. 2002. “The History of Thalidomide.” Drug News & Perspectives 15 (9): 604–11. http://dx.doi.org/10.1358/dnp.2002.15.9.840066 Braun, V., and N. Gavey. 1999. “‘Bad girls’ and ‘good girls’? Sexuality and Cervical Cancer.” Women’s Studies International Forum 22 (2): 203–13. http://dx.doi. org/10.1016/S0277-5395(99)00007-2. Braun, L., and L. Phoun. 2010. “HPV Vaccination Campaigns: Masking Uncertainty, Erasing Complexity.” In Three Shots at Prevention: The HPV Vaccine and the Politics of Medicine’s Simple Solutions, edited by K. Wailoo, J. Livingston, S. Epstein, and R. Aronowitz, 39–60. Baltimore: Johns Hopkins University Press. Canadian Immunization Committee (CIC). 2007. “Recommendations on a Human Papillomavirus Immunization Program.” Public Health Agency of Canada. Last

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Gilmour, J., C. Harrison, L. Asadi, M.H. Cohen, and S. Vohra. 2011. “Childhood Immunization: When Physicians and Parents Disagree.” Pediatrics 128 (Suppl): S167–74. http://dx.doi.org/10.1542/peds.2010-2720E. GlaxoSmithKline, Inc. 2011. “Who is Cervarix For?” GSK. Accessed 11 June 2012, http://cervarix.ca/fight_back.html?slide=1 (site discontinued). Gurevich, M., C.M. Mathieson, J. Bower, and B. Dhayanandhan. 2007. “Disciplining Bodies, Desires and Subjectivities: Sexuality and HIV-Positive Women.” Feminism & Psychology 17 (1): 9–38. http://dx.doi.org/10.1177/0959353507072910. Kempe, A., M.F. Daley, M.M. McCauley, L.A. Crane, C.A. Suh, A.M. Kennedy, M.M. Basket, S.K. Stokley, F. Dong, C.I. Babbel, et al. 2011. “Prevalence of Parental Concerns about Childhood Vaccines: The Experience of Primary Care Physicians.” American Journal of Preventive Medicine 40 (5): 548–55. http://dx.doi.org/10.1016/j.amepre.2010.12.025. Leach, M., and J. Fairhead. 2007. Vaccine Anxieties: Global Science, Child Health and Society. London: EarthScan. Li, A. 2012. “Pediatricians in Canada Discharging Unvaccinated Children.” Toronto Star. 25 April. https://www.thestar.com/life/2012/04/25/pediatricians_in_canada_ discharging_unvaccinated_children.html. Lupton, D. 1995. The Imperative of Health: Public Health and the Regulated Body. London: Sage Publications. – 1997. “Foucault and the Medicalisation Critique.” In Foucault, Health and Medicine, edited by A. Petersen and R. Bunton, 94–110. London: Routledge. – 1999. Risk. London: Routledge. Lyerly, A.D., L.M. Mitchell, E.M. Armstrong, L.H. Harris, R. Kukla, M. Kupperman, and M.O. Little. 2009. “Risk and the Pregnant Body.” Hastings Center Report 39 (6): 34–42. http://dx.doi.org/10.1353/hcr.0.0211. Merck & Co, Inc. 2010. GARDASIL® [Human Papillomavirus Quadrivalent (Types 6, 11, 16, and 18) Vaccine, Recombinant]. Accessed 23 July 2012, https://www. gardasil9.com/. Merck Frosst Canada Ltd. 2009. GARDASIL® [Quadrivalent human papillomavirus (Types 6, 11, 16, and 18) Recombinant Vaccine]. Accessed 23 July 2012, http:// gardasil.ca/home.html. Moore, T.J., B.M. Psaty, and C.D. Furberg. 1998. “Time to Act on Drug Safety.” Journal of the American Medical Association 279 (19): 1571–3. http://dx.doi.org/10.1001/ jama.279.19.1571. Musso, E., and S.E.L. Wakefield. 2009. “Tales of Mind over Cancer: Cancer Risk and Prevention in the Canadian Print Media.” Health Risk & Society 11 (1): 17–38. http:// dx.doi.org/10.1080/13698570802536567. National Advisory Committee on Immunizations (NACI). 2012. “Update on Human Papillomavirus (HPV) Vaccines.” Canada Communicable Disease Report 38 (ACS-1): 1–62.

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Nettleton, S. 1997. “Governing the Risky Self: How to Become Healthy, Wealthy and Wise.” In Foucault, Health and Medicine, edited by A. Petersen and R. Bunton, 207–222. London: Routledge. Nguyen, V., and K. Peschard. 2003. “Anthropology, Inequality, and Disease: A Review.” Annual Review of Anthropology 32 (1): 447–74. http://dx.doi.org/10.1146/annurev. anthro.32.061002.093412. Petersen, A. 1997. “Risk, Governance and the New Public Health.” In Foucault, Health and Medicine, edited by A. Petersen and R. Bunton, 187–206. London: Routledge. – 2003. “Governmentality, Critical Scholarship, and the Medical Humanities.” Journal of Medical Humanities 24 (3): 187–201. http://dx.doi.org/10.1023/A:1026002202396. Roberts, J.M. 2012. “The ‘Chick Shot’: Negotiating Gendered Responsibility and Risk through Young Women’s Decisions about HPV Vaccination”. MA thesis, University of Victoria. Rose, N., and C. Novas. 2005. “Biological Citizenship.” In Global Assemblages: Technology, Politics, and Ethics as Anthropological Problems, edited by A. Ong and S. Collier, 439–63. Malden, MA: Blackwell. Sato, K. 2012. “You Want to Do Everything in Your Power: Representations of Breast Cancer Risks in Canadian Popular Women’s Magazines.” MA thesis, University of Victoria. Society of Obstetricians and Gynaecologists of Canada (SOGC). 2007. “GOC Responds To Public Concerns Regarding HPV Vaccine And Cervical Cancer Prevention.” HPVInfo.ca. Accessed 21 April 2015, http://www.hpvinfo.ca/healthcare-professionals/position-statements-on-hpv-vaccination/ (site discontinued). – 2015a. “What Is HPV?” Accessed 15 January 2017, http://hpvinfo.ca/what-is-hpv/. – 2015b. “Prevention.” Accessed 14 January 2017, http://hpvinfo.ca/prevention/. Wailoo, K., J. Livingston, S. Epstein, and R. Aronowitz. 2010. “Individualized Risk and Public Health: Medical Perils, Political Pathways, and the Cultural Framing of Vaccination under the Shadow of Sexuality.” In Three Shots at Prevention: The HPV Vaccine and the Politics of Medicine’s Simple Solutions, edited by K. Wailoo, J. Livingston, S. Epstein, and R. Aronowitz, 293–302. Baltimore: Johns Hopkins University Press. Waxman, H.A. 2005. “The Lessons of Vioxx – Drug Safety and Sales.” New England Journal of Medicine 352 (25): 2576–8. http://dx.doi.org/10.1056/NEJMp058136.

11 Approaching Vaccine-Hesitant Parents: A Clinician’s Perspective françois d . boucher

In the early 1990s, the province of Quebec experienced the worst pertussis (whooping cough) outbreak in a generation (De Serres et al. 1995), seeing thousands of children hospitalized. At the time, I was just starting my practice as a paediatric infectious diseases consultant at the Laval University hospital in Quebec City, and under my care was a boy, five years of age, struggling in the intensive care unit with respiratory failure from complications of the disease. As it turned out, the child had never received any vaccine and was therefore unprotected against pertussis. His mother was in her early thirties, and she owned and managed a mediumsized dairy enterprise. An intelligent, articulate woman, she was deeply affected by her son’s condition and expressed feelings of guilt at not having her children immunized. I was determined to understand why she had chosen not to vaccinate her children, but she did not initially wish to discuss her reasons. Once her son was out of danger, and after some degree of trust was built between us, she finally shared her story. The explanation, which appeared reasonable to her at the time, now seemed preposterous to her: Years before, when her son was born, she had had a number of questions and worries about vaccines, and she found some answers only through a conference she attended in her town. The speaker had convinced her that vaccines were part of a scheme devised by “the government” to introduce “liquid crystals” into individuals, designed to allow authorities to track citizens at any time during their lives. As the boy’s mother was explaining this, the absurdity of the theory became apparent to her. What more could I say? My initial reaction to her story was one of astonishment. I certainly was not expecting this explanation, and at that time, I had very little experience with parents’ attitudes toward immunization. I came to the realization that many parents harboured more or less articulated and more or less rational fears and worries about vaccines; I also realized that

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physicians’ evidence-based narratives could do little to reassure individuals whose decisions grew out of very emotional impressions. Now, many years later, I have come to understand that, like many parents who delay or refuse vaccines for their children, this woman was not really opposed to immunizations, but, rather, just worried and hesitant. Often, such parents may be too embarrassed to voice their fears, or their family doctors may be too busy or not confident enough in their own capacity to explain the real risks and benefits of vaccines. Failure to vaccinate in cases such as these may be considered the result of a breakdown in communication and trust. The Societal Dialogue around Vaccines Parents considering immunizations for their children are exposed to a vast and confusing array of literature, television programs, opinions, stories, websites, anti-vaccination groups, and other sources of often misleading information. In fact, as Bramadat notes in this book, the ongoing discussions surrounding immunizations are so complex as to be confusing, even to health care practitioners such as nurses and physicians, the people who are primarily responsible for immunizing children and adults. Many new (often expensive) vaccines are being introduced, and immunization programs differ by province (see chapter 8 by Bettinger and MacDonald in this volume); thus, vaccines and immunization programs have become exceedingly complicated and difficult for both parents and health care providers to understand. In the middle of complex forces influencing debates around vaccines, physicians are buffeted by strong and conflicting currents. On the one hand, parents considering immunization have many issues and uncertainties bearing on their decisions to vaccinate their children. On the other hand, clinicians need to spend more time and energy to keep up to date with new developments in vaccine science and immunization programs, and they may feel inadequately prepared to explain all of the issues to parents with these considerations. Furthermore, the increasing popularity of anti-vaccine discourses – which circulate rapidly through social media – means that the future benefits of vaccines may not be fully realized. The situation is serious, and we need to critically examine and adapt to the factors influencing this change in parental sentiments (Chen 1999). The following chapter grows out of my personal background as a clinician with more than twenty-five years of experience in the field of paediatric infectious diseases and immunization. From this vantage point, I will briefly consider my own impressions of the social and cultural characteristics of vaccine-hesitant parents. Although the other chapters in this book are intentionally descriptive

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rather than prescriptive, I will use my clinical experience and familiarity with the research literature to provide guidance to health care practitioners so they may better understand their clients’ motivations and answer their questions. As a physician who sees Canadian children die from vaccine-preventable diseases every year, I feel strongly that something needs to be done to improve this situation. As such, the tone and purpose of this chapter are decidedly normative. A framework for communicating with vaccine-hesitant parents will be described in an attempt to help health professionals venture beyond the simple provision of information and to assist them in adapting their communication strategies to the specific needs of parents and cultural and religious doubts parents express about vaccines. The framework I propose is informed by my own clinical experience and evidence from decision-making and communication research. Why Are Parents Hesitant about Immunizations? Despite a large body of literature on the safety of vaccines, the rigorous process that leads to the approval of new immunizing agents, and the extensive post-marketing surveillance of vaccine-related adverse events (see chapter 9 by Naus, Law, and Rinfret in this volume), parents clearly do not universally consider vaccines as safe and as necessary as they might have in the past. Hesitant parents are also now more focused on vaccine risks, and they are aware of other parents not vaccinating their children (Gust, Brown, et al. 2005). Trust in their doctors or nurses is key for this group that is keen to have discussions in which their questions are answered satisfactorily and completely by knowledgeable health professionals with relevant information (Benin et al. 2006).1 It may prove difficult for the physician to understand the complex interactions of societal, educational, behavioural, cultural, religious, and other factors that influence parental attitudes towards vaccines (MacDonald 2015; see also chapter 6 by Guay, Dubé, and Laberge in this volume). However, what always emerges from surveys of the attitudes and beliefs of parents is that health care providers have a positive influence on parents to vaccinate their children, even when parents believe that vaccinations are unsafe (Gust et al. 2008; Smith et al. 2006). It is also apparent that 15 to 30 per cent of vaccine-hesitant parents wish for more information on vaccines (Gust, Kennedy, et al. 2005; Ekos Research Associates 2011; Boulianne et al. 2009; Boulianne et al. 2011; Dubé, Vivion et al. 2015). It is therefore extremely important for physicians to realize the influence that they have on parental decisions about immunizing children. A recently conducted survey of parents and primary care providers of vaccinated and unvaccinated school-aged children in four U.S. states showed that parents may selectively choose providers who have similar beliefs to their own (Mergler

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et al. 2013). I have certainly seen evidence of this throughout my career. Clinicians need to understand that only a sensitive and sensible approach to families, and ongoing dialogue with parents based on mutual confidence and trust, will allow them to understand the deep causes of vaccine hesitancy and provide a foundation for reassuring vaccine-hesitant parents that immunization is the best and safest option for their child (Opel et al. 2013). Specific Parental Concerns about Immunizations My personal clinical experience and the research literature confirm that although parental concerns about vaccines, either expressed or incompletely articulated, are multiple and varied, they usually fall under the following limited number of identifiable categories, which relate to the safety and efficacy of vaccines (Mills et al. 2005) (see also Table 11.1): • Concerns about the effectiveness of vaccines. Some people feel vaccines may not be needed anymore, because the diseases against which they are meant to protect have disappeared; there is also worry that vaccines may not work as advertised. This notion is sometimes associated with a worry that “Big Pharma” is responsible for keeping ineffective vaccines in the immunization program. • Concern that vaccines and/or their additives are unsafe. Some people worry that vaccines will give the immunized person the actual disease or that somehow getting the “natural” disease is healthier and provides for better, longer lasting protection (Offit and Jew 2003). • Fear that vaccines or their additives may cause harm. Some people worry that vaccines or their additives may weaken the immune system (Offit et al. 2002), particularly if injected as multiple antigen combinations, or that they might be the cause of rare, poorly understood diseases such as autism, multiple sclerosis, and autoimmune diseases (Offit and Hackett 2003). Leask, Chapman, and Cooper Robbins (2010) identified, in the public literature and the Internet, diseases and conditions that some critics claim to have been caused by vaccines. According to these critics, such conditions share an idiopathic origin, an apparent rise in incidence, a biological plausibility of a link to vaccines at face value, and dreaded outcomes, and their onset has close temporal proximity to immunization. The authors concluded that any attempt to reframe erroneous claims about vaccination first requires an identification of the deeper anxieties at work in the mind of the individual or of his/her community.

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Table 11.1  Parental concerns about vaccines and immunization Suspicions Examples about vaccines Are vaccines necessary?

Are vaccines efficacious?

Are vaccines safe?

Many vaccine-preventable diseases, such as polio and diphtheria, are not seen anymore. Why do we still have to immunize our children against those? The idea that immunity conferred by natural disease is stronger and more lasting than vaccine-induced protection. The notion that herd-immunity protects those that choose not to be vaccinated. The very prevalent belief that some vaccines give the recipient the actual disease. The fact, not well understood by non-medically trained individuals, that some vaccines, such as varicella vaccine, do not entirely prevent the disease, although they are very efficient at preventing complications, morbidity, and death associated with the disease. The disappearance of protection with time, such as with the tetanus vaccine, requiring repeat immunizations throughout life. The fear that certain vaccines, or their additives, such as thimerosal, may cause rare diseases of unknown causes. Examples include the following:   • the measles vaccine as a cause of autism and related developmental disorders,   • the diphtheria, pertussis, and tetanus (DPT) vaccine as a cause of sudden infant death syndrome or epilepsy,   • the Haemophilus influenzae type b vaccine as a cause of diabetes mellitus,   • the inactivated poliomyelitis vaccine as a cause of paralytic polio,   • the claimed existence of “hot lots” (some batches of any vaccine) causing multiple systemic problems,   • multiple vaccinations as the cause of undefined harmful immunologic effects from vaccine interactions or immune system overload.

Adapted from Offit et al. (2002); Offit and Hackett (2003); Offit and Jew (2003).

All parents want what is best for their children, and health professionals may be dismayed to observe that some parents doubt the safety or usefulness of a medical intervention that has been, time and again, proven to be safe and beneficial. However, as other authors indicate in this book, immunization is, in a sense, a victim of its own success: as vaccine-preventable diseases fade from the public eye as a consequence of successful vaccination programs, parents shift their focus of attention towards the perceived risks of vaccinations. As Brunk outlines in chapter 3 in this book, there is a generalized tendency in people to weigh the perceived possible harms resulting from an actual action

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(immunizing one’s children) differently from those dreaded outcomes resulting from inaction, perceived as “fate” (getting the disease). Parents fear the eventual consequences of a vaccine, even if extremely remote, but they show much higher tolerance for their child’s possible acquisition of a vaccine-preventable disease, generally felt to be rare, benign, or treatable. These differential perceptions of risk are often combined with a tendency to distrust “Big Government,” “Big Industry,” and “Big Pharma.” I have found that these dimensions of mistrust are very hard to address in a clinical setting, as they are based on very well-publicized catastrophic failures such as the HIVtainted blood scandals, food-related prion disease outbreaks, and other manmade public health calamities. Although these are not specific to vaccines, they did occur and are health-related; in the minds of my concerned patients, these events cast doubt on immunization programs in general. Origins and Dissemination of Anti-Vaccination Information As Roy (chapter 4) and MacDougall and Monnais (chapter 5) explain in this book, ever since the introduction of immunizations in the eighteenth century, people have been concerned about vaccinations. In the twentieth century, the development of mass communications and, especially, the advent of the Internet have opened new information channels to the opponents of immunization, allowing their arguments to permeate public discourse. Parents using these media to help guide their decisions are exposed almost daily to anti-vaccination arguments. Among anti-vaccination activists, one will no doubt find parents who are convinced their children have been harmed by vaccines. Also among these subcultures, one will find anti-science or anti-medicine coalitions and groups opposed to government, proponents of alternative medicine, and members of religious organizations. Some groups share views of the body rooted in convictions about the distinction between human-made and “natural” products (with “natural” always connoting the preferable option), while others operate out of a religious framework that makes them reluctant to accept vaccinations, since that would alter “God’s will” for their bodies (see chapter 1 by Bramadat in this volume). Some of these groups are led by very well-known public figures (such as Jenny McCarthy in the United States). Characteristically, these antivaccine groups use names that suggest they are a source for balanced information on immunization. Two of the main anti-vaccine groups in Canada and the U.S. are VRAN (Vaccine Risk Awareness Network, now called Vaccine Choice Canada) and NVIC (National Vaccine Information Center). Both groups promote informed choice in vaccination and disseminate information regarding the perceived risk of infant vaccination programs. They attract those who

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are suspicious of modern medicine and the motives of public health officials. Because anti-vaccination activists are vocal, and because the Internet provides an affordable and convenient outlet through which they can broadcast their messages, it is not surprising that these groups have found an audience. Although they do not usually set out to promote an anti-vaccine agenda, the press and other mainstream media have a tendency to present outrageous claims of harm caused by vaccines as unassailable “facts” in a form meant to attract attention. The power of anecdotal experience or visual imagery cannot be underestimated. A short video of a child allegedly damaged by vaccines exploits every parent’s worst fears and is far more compelling than a news story detailing the safety of vaccines or progress in the eradication of diseases that parents have never seen or even heard about. Scientific information may be offered by health specialists as a counterargument to the inflated or false claims of anti-vaccine factions. However, medical or scientific data is hard to understand for the lay public and medical authorities may not effectively communicate such data within a few minutes of time on a television or radio broadcast. Moreover, many public health professionals are loath to use the same sensational and fear-based tactics used by anti-vaccine proponents. Even worse, in the interest of a “balanced view,” journalists generally provide critics with equal opportunities to express commentary (see Picard, chapter 12 in this volume), rarely acknowledging that a specific controversy has been resolved definitively by scientific or epidemiologic studies. Also rarely acknowledged is the fact that safety concerns have been assessed thoroughly among an overwhelming number of well-informed scientists, and a broad consensus has emerged around the safety of vaccination programs. Thus, regarding the well-publicized Andrew Wakefield affair discussed in numerous chapters in this book (Deer 2009), it took twelve years for the editors of The Lancet, a famous medical journal, to finally retract a fraudulent, poorly executed, and ultimately discredited study linking the measles, mumps, rubella (MMR) vaccine to autism in a very small number of children (Eggertson 2010). In that time, the fraudulent study received media coverage equal to that of the many large-scale studies or lengthy court judgments that proved that no such association exists (Gerber and Offit 2009). A similar phenomenon is observable in the way the media tries to present a “balanced approach” to the “debate” around climate change and, in the process, unwittingly promotes erroneous public perceptions with potentially disastrous consequences. Health Professionals Responses to Parental Vaccine Safety Concerns Physicians, nurses, and other health care professionals involved in immunization care deeply about their patients, and most work hard at promoting

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i­mmunization. Health care providers generally understand that they have a positive influence on parents to vaccinate their children, including parents who believe that vaccinations are unsafe. Thus, these professionals may be dismayed by parental attitudes that appear to discount the obvious benefits of immunizations and instead emphasize the perceived risks, and that seem to be rooted in religious and cultural sensibilities that appear, initially, to be impossible to understand or alter. Health care providers may feel that these parents adhere to a health maintenance paradigm that is totally alien to traditional medicine and that might reflect some of the “magical thinking” discussed in this volume by Bramadat (chapter 1). As such, it is not surprising that some health care professionals interpret these parental attitudes as a rejection of their own models or as a lack of confidence in their professional knowledge and skills. In short, parental vaccine ambivalence may lead physicians to worry about whether particular patients will ever be able to trust them and also whether these patients might embroil medical staff in legal quagmires related to illnesses interpreted as being linked to vaccinations (Lyren and Leonard 2006). In 2010, Wendy Sue Swanson, a physician from Seattle, polled paediatricians involved in immunization in order to obtain information on the ways they reacted to parents who were hesitant about or opposed vaccinations (Swanson 2010). She wrote an e-mail to thirty-three paediatrician colleagues asking “what they would say, while in line for coffee, to the parent of a newborn when asked if they believed in vaccines.” More than twenty of her colleagues promptly responded, providing a glimpse into physicians’ reactions to vaccine hesitancy. Swanson classified paediatricians’ responses in three general categories: some of them offered “emotional” responses to the question asked, others appealed to “evidence” (such as published vaccine safety data), and others appealed to their clinical “experience.” These attitudes are not mutually exclusive: some physicians appealed to evidence in their emotional comments, experience in the evidence-based comments, and emotion in the clinically-based comments. This range of responses resonates with most health professionals I have encountered in my career. The study, reported on Dr. Swanson’s blog “Seattle Mama Doc” in 2010, generated a very large response in the form of comments and forward linking by health professionals, parents, and other observers of the vaccine debate. In Table 11.2, I have provided some of the responses she received in order to help health providers reflect on their own reactions to vaccine-hesitant parents. It is important to understand these examples because providers’ private feelings, attitudes, and reactions to these parental concerns determine in part the responses that they provide to these families (Mergler et al. 2013).

Table 11.2  Sample responses from paediatricians asked what they would say, while in line for coffee, to the parent of a newborn when asked if they believed in vaccines Type of response

Sample responses

Emotional

Dr. David Hill: “Boy is this an issue on all of our minds! For me this question has particular poignancy, as we all watched our partner’s (a paediatrician) twenty-two-year-old daughter die of H1N1 last year. To see her face-down on a ventilator, bloated and pale and then to have a parent tell me, as one did last week,‘Everyone knows the flu vaccine causes just as much disease as it prevents.” His response to that parent’s viewpoint: “Screaming seems inadequate.” Dr. Ari Brown: “The most effective [technique in talking with families] had nothing to do with science. It was all emotion (cue Jenny McCarthy’s playbook here) – ‘I vaccinate myself and my family to protect them. I wouldn’t do anything differently for your child.’ Of course, nothing works one hundred per cent of the time, but I can honestly say that this message does work more effectively than all the rest, and yes, it takes less than two minutes.” Dr. Paul Offitt: “I would make the case that a choice not to get vaccines is not a risk free choice. Rather, it’s a choice to take a different and far more serious risk.” Dr. Brian Vartabedian: “Your daughter has the privilege of being born into the world at a time when deadly communicable diseases of infancy are effectively unheard of. Diseases that at one time could have left this precious baby blind, deaf and retarded are now found only in textbooks … As this baby’s mother you have the sole responsibility to protect her and keep her out of harm’s way.Your baby can’t make the decision.You have to do it for her.” Dr. Ellen Lipstein: “For me, and I hope for my patients, vaccines aren’t about beliefs, but about evidence. In all the decisions we make for the people we love we have to balance the evidence of risks with the evidence of benefits. For me there is no doubt that vaccines are highly beneficial for the person that receives them, their family members and the general community. They are not without risks, but the risks are very small, compared to the risks of not vaccinating.” “In working with families who are vaccine hesitant, I think a valuable option would be to take a page from the shared decision-making literature. Specifically we need better resources that visually depict risks.Traditionally (perhaps not surprisingly, nearly all this work is in adult medicine) tools that help individuals determine their values and risk preferences have been limited to situations where there is nearly absolute clinical equipoise, two equally good (or bad) medical options.Think prostate and breast cancer screening and treatment. However, we know that individuals struggle with decisions that the medical community thinks are relatively straightforward and not situations of equipoise.Taking the lessons from these other settings may help us design resources that facilitate parent understanding, clinical discussions and choices that everyone can live with.” Dr. Ari Brown: “So, what do you say to the cautious parents? Much of it is not talking, but listening. Studies have shown in low concern settings, people look to the experts for advice. In high concern settings, people look to the empathetic listener, not the expert.”

Evidencebased

(Continued)

Table 11.2  Sample responses from paediatricians asked what they would say, while in line for coffee, to the parent of a newborn when asked if they believed in vaccines (Continued) Type of response

Sample responses

Dr. Doug Diekema: “First, I make people aware that they may be putting other children at risk by not vaccinating their own children – that almost every school has someone who has cancer or an immune deficiency and who would be placed at risk if they came in contact with an unvaccinated child who had pertussis or measles or chicken pox. Second, I think we can recognize parent’s concerns about vaccines and share our own concerns about children who are unvaccinated. In the past six months, pertussis has killed two infants in Washington State and more than ten in California. Those are real children killed by a real disease that can be prevented by vaccines. In just two states, twelve deaths in six months. Even the wildest scare tactics of the anti-vaccine crowd can’t match that in terms of devastation.” Experience- Dr. Kronman:“We don’t see these diseases anymore. I work at a premier based tertiary/quarternary care facility for children. I have seen children die of influenza (seasonal, H1N1), pneumococcus, meningococcus, the late sequelae of measles, pertussis; I have seen Hib meningitis, tetanus, severe debilitating outcomes with varicella, cervical cancer caused by HPV, and severe rotavirus. This list goes on. But most people haven’t seen these things anymore. People don’t have to panic about their children in the summer becoming permanently paralyzed from polio, because we don’t see it anymore. And the reason? Vaccines.” Dr. Natasha Burgert: “In other parts of the world where I have briefly practiced medicine, I have seen the faces of grieving families whose children have died from vaccine preventable diseases. Those families did not have the equal opportunity that you have for your family.” Dr. Natalie Vogel: “With patients in clinic, and when thinking about immunizations, I come back to thinking about how hesitancy is about a person’s personal perception of risk. Understanding risk is so complicated and personal! It pits fact and epidemiology (‘science’) right up against emotion. My sense of risk is very different from the next person’s. Addressing that sense is crucial in a discussion of vaccines with a tentative family.” Dr. Denise Shushan: “When I’m talking about this with parents in the ER, I always begin by acknowledging the profound mistrust that has developed in the community between vaccine-making companies, physicians and families. I also acknowledge that, while I think that the vast majority of cases of serious events that occur near vaccine administration times are coincidental, there may be a subset of kids in whom the immune reaction generated by vaccine administration stimulates some pre-existing propensity for medical badness (obviously, I don’t say it that way, but my brain is fried after working all night). In my opinion, our job is to research this issue to try and determine if there is such a subset of kids, and if so, to figure out how to identify those kids. We trust most parents on their gut feelings on so many other occasions. Yet, as a profession, we are quite dismissive (which seems arrogant to families) of parents who describe a deterioration in their child after immunizations. I don’t think that helps our cause any.” Source: Swanson (2010).

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Understanding and Communicating with Vaccine-Hesitant Parents Public health messages designed to support vaccination often presume that parents who entertain doubts or reservations are irrational, emotional, illinformed, or that they are being manipulated by anti-vaccination groups. Thus, health care providers may believe that parental resistance to vaccination might be remedied merely by supplying additional information about risks and benefits. An alternate explanation – discussed by Bramadat (chapter 1), O’Doherty, Smith, and McMurtry (chapter 2), and Brunk (chapter 3), in this book – may be that parents who question vaccine safety use an entirely different decisionmaking model or subscribe to a different set of beliefs about health and illness than health care providers might espouse. Given that these parents and patients are operating out of different cultural or religious “paradigms,” supplying better or simply more data about vaccine safety may not adequately address parental concerns (Senier 2005). Some basic understanding of the intellectual, cultural, and religious frameworks through which the perceptions of risks are determined might be of benefit to physicians considering their communication strategy with vaccinehesitant parents (Stoto, Evans, and Bostrom 1998; cf. chapter 3 by Brunk in this volume). The largest proportion of parents who changed their minds about delaying or not getting a vaccination for their child listed “information or assurances from health care provider” as the main reason (Gust et al. 2008). Paediatricians are viewed as a credible source of vaccine recommendations, a notion supported by studies of paediatric practitioners that indicate provider behaviour and attitudes may be the most important determinant of immunization rates (Taylor et al. 1997; Mergler et al. 2013). Thus, establishing a trusting, non-confrontational dialogue from the outset is essential in ensuring a positive outcome for the patient. Specific strategies to prevent parental vaccine refusal are just now being studied in a scientific way. Systematic reviews of the literature, a recent metaanalysis, and my own clinical experience demonstrate that there is very little good quality evidence regarding effective strategies to address vaccine hesitancy (Kaufman et al. 2013; Sadaf et al. 2013; Jarrett et al. 2015; Dubé, Gagnon, and MacDonald 2015). Specifically, very few strategies to address vaccine hesitancy have been evaluated for influence on either vaccination uptake or changes in knowledge, awareness, or attitude (Jarrett et al. 2015). However, given that primary care providers are the most influential actors in decisions about immunizations, it has always been important for them to establish open, honest, non-confrontational relationships within which they can discuss the

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importance of childhood vaccinations, beginning with the first provider-parent interaction (MacDonald, Finlay, and Infectious Diseases and Immunization Committee 2013; Goldstein, MacDonald, and Guirguis 2015). When Is the Best Time to Discuss Immunization with Parents? The initial discussion about immunizations should take place at the health care provider’s first opportunity with parents, ideally before a child is born. A recent study (Vannice et al. 2011) assessed the best moment to discuss immunization with vaccine-hesitant parents. Mothers who indicated concerns about infant vaccinations were recruited from two separate sites in the U.S., and each mother was provided with vaccine information at one of three times: during a prenatal visit, at a one-week post-partum well-child visit, or at a twomonth vaccination visit. A separate group of concerned mothers was assigned to be followed longitudinally at all three time points. Participants were given a pamphlet that specifically addressed a number of vaccine-safety questions, including, “Why do children need so many vaccinations?” “Why does my child have to receive so many vaccines in one visit?” and “When should my child not receive a vaccine?” Participants also reviewed legally mandated vaccinespecific information statements from the Centers for Disease Control and Prevention. Attitudes and beliefs about immunization were assessed with written surveys both before and after the participants’ review of materials. Mothers who received vaccine information at earlier visits were not significantly more likely to respond positively than mothers who received the information at the child’s two-month vaccination visit. Participating mothers did, however, indicate a preference for receiving vaccine information before the first vaccination visit. The authors concluded that allowing adequate time for parents to review vaccine information, even if the material is provided at the vaccination visit, may benefit concerned mothers (Vannice et al. 2011). Ideally, education should start at the prenatal visit and continue at all subsequent well-child visits. What Are the Best Strategies for Discussing Immunization with Parents? Several recent reviews have discussed the best strategies for health provider communication with vaccine-hesitant parents. Currently, these communications strategies have not been formally tested in an experimental protocol; they are, rather, based on providers’ experiences (Healy and Pickering 2011; Boom and Healy 2017; Petit and Letellier 2004; Dubé, Gagnon, and MacDonald 2015), on direct observation of physician-parent interactions (Opel et al. 2012), and

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on the development of strategies based on communication science, motivational interviewing, and valid consent principles (Leask et al. 2012). Although the approaches presented vary, they do share some common characteristics.

Establish an Open, Empathic Dialogue The simple provision of vaccine-positive information and facts will not suffice. It should be made clear that the health professional understands that the primary concern of vaccine-hesitant parents is the welfare of their child, and that this concern is shared by the physician. Listening carefully to parents’ worries, helping them to voice their apprehensions, and generally trying to empathize with parents is key to good communication.

Identify and Explore Specific Parental Concerns, Including Pain In my own experience, I have been surprised to observe, time and again, how often vaccine-hesitant parents are wary of asking specific questions about vaccines, either because they are worried that their queries will be dismissed as foolish or because they fear embarrassing an inexperienced health care provider. Specific parental concerns need to be explored actively, with empathy and in detail. I have found it useful to state explicitly to these parents that I am not engaging them in order to promote immunizations but that I am genuinely interested, as a kind of “collector” of stories about vaccines, in hearing their concerns and that I have heard so many stories during my career that nothing surprises me anymore. Whether their concerns are rooted in religious or cultural sources, if they are creating doubts and anxieties in the minds of patients, it is crucial for clinicians to understand them. This genuine interest is especially useful in establishing a climate of trust and empathy with parents I have never met before.

Acknowledge that Vaccines May Be Associated with Pain and Adverse Events and Balance These against Disease Risk It is essential that physicians are knowledgeable about the common side effects of vaccines, as well as the prevention and treatment of any such events. Adverse effects of childhood vaccines are common and usually benign. Some of these, such as local pain, may be prevented to a fair degree, and all of the common adverse effects of vaccines can usually be mitigated with medication (such as acetaminophen for fever). Health care practitioners who immunize need to implement well-known physical interventions and injection techniques that

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minimize pain.2 These techniques can be easily incorporated into clinical practice without added cost or time (Taddio et al. 2009; Smith, Appleton, and MacDonald 2013; Taddio et al. 2010). Practitioners should reassure parents that every means will be utilized in order to minimize injection pain in their ­children.

Target Education to Address Specific Parental Concerns, Providing Reliable Information Resources To meet parents’ needs for information and deliver this information in a timely manner, experts in risk communication recommend layering information according to individual needs (Ball, Evans, and Bostrom 1998; Tenrreiro 2005). Layering information means presenting education to parents using various formats, such as handouts, videos, websites, and discussions, and includes providing multiple levels of information according to parents’ specific needs. Layering education also involves presenting vaccine information on a continuous basis, over multiple visits if needed, so as not to overwhelm parents with too much information at once. See Table 11.3 for a number of easily accessible, highquality information sources that may be used to help educate parents about vaccines and immunization programs.

Maintain the Provider–Patient Relationship, Ensuring Ongoing Communication Paediatricians in Connecticut were surveyed in 2007 in order to examine their experience with and response to parental vaccine safety concerns and refusals (Leib, Liberatos, and Edwards 2011). Suburban physicians caring for wealthier, better educated families experienced more vaccine concerns and/or refusals and were more likely to stop treating families for vaccine refusal. Although that study found that more than 30 per cent of responding paediatricians dismissed families who refused all vaccines, such a practice challenges the basic bioethical principles of autonomy, beneficence, and justice (Nulty 2011; Halperin et al. 2007); indeed, it may be illegal under certain circumstances (Halperin et al. 2007). Dismissal is clearly not in the best interest of any child, as continued dialogue may, in time, re-establish worried parents’ confidence in immunizations. For these reasons, both the Canadian Paediatric Society and the American Academy of Pediatrics’ Committee on Bioethics discourage physicians from discontinuing care for families who refuse or delay immunization, unless a substantial level of distrust develops, significant differences in the philosophy of care emerge, or poor quality of communication persists (Diekema and

Table 11.3  Sources of reliable information for families concerning immunizations Title

Description

Reference

The Canadian Paediatric Society – La Société canadienne de pédiatrie Your Child’s Best Shot – A Parent’s Guide to Vaccination, 4th Edition by Dorothy L. Moore, MD, FRCPC The Canadian Coalition for Immunization Awareness and Promotion (CCIAP)

The CPS offers many printed documents for parent education, including “Getting Your Shots,” a collection of pamphlets about specific vaccines, in both French and English. A book for parents includes detailed information on all recommended childhood vaccines and reproducible fact sheets that health professionals can distribute to parents.

http://www.cps.ca/

CCIAP aims to meet the goal of eliminating vaccine-preventable disease through education, promotion, advocacy, and media relations. It includes resources for parents and providers, including “How to Advise Parents Unsure about Immunization” by Scott A. Halperin, MD. Caring for Kids – Canadian Information for parents, on children’s health and immunizations, by Paediatric Society Canadian paediatricians, provided in both English and French. American Academy of Pediatrics’ General information for providers and parents about childhood Childhood Immunization immunizations. Support Program (CISP) The Immunization Action The IAC works to increase immunization rates by creating and distributing Coalition (IAC) educational materials for health professionals and the public that enhance the delivery of safe and effective immunization services. Their “Unprotected People Reports” are case reports, personal testimonies, and newspaper and journal articles about people who have suffered or died from vaccine-preventable diseases. Centers for Disease Control and Information about vaccine safety for health care professionals and Prevention (CDC) national parents, including their Parents’ Guide to Childhood Immunizations. immunization program CDC national immunization Provider resources for vaccine conversations with parents. program Institute for Vaccine Safety, Provides an independent assessment of vaccines and vaccine safety to Johns Hopkins University help guide decision-makers and educate physicians, the public, and the media about key issues surrounding the safety of vaccines. Note: All websites were accessed 15 January 2017 and were active at that time.

https://bookstore.cps.ca/stock/ details/your-childs-best-shot-aparents-guide-to-vaccination-4thedition http://immunize.cpha.ca/en/default. aspx http://www.caringforkids.cps.ca http://www.aap.org/immunization http://www.immunize.org/reports/

http://www.cdc.gov/vaccines/hcp.htm http://www.cdc.gov/vaccines/hcp/ patient-ed/conversations/index.html www.vaccinesafety.edu

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­ merican Academy of Pediatrics Committee on Bioethics 2005; MacDonald, A Finlay, and Infectious Diseases and Immunization Committee 2013). Conclusion Despite the success of public immunization programs in curbing disease and preventing death and disability, increasing levels of vaccine hesitancy are disconcerting to health care providers and threaten the effectiveness of immunization programs. Addressing the concerns of vaccine-hesitant parents must be a priority for health care professionals, who need to clearly understand and address the deep reasons – some that are religious but most that are what we are calling “cultural” in this book – underlying vaccine hesitancy, both at the emotional and cognitive levels. In an effort to provide readers with an insight into the way vaccine hesitancy is interpreted by physicians working regularly with parents who have all manner of concerns about vaccines, in this chapter I have relied on my clinical experience as well as my understanding of the most relevant scholarly materials on the issue of vaccine hesitancy. In this chapter’s tables, I have provided an account of the most common suspicions one hears in clinical settings, a cross section of responses doctors provide to vaccine-hesitant patients, and a list of relevant resources for medical professionals interested in maintaining and improving their relationships with patients who express concerns about vaccines. In my view, however, fostering and sustaining confidence in immunization programs will not be achieved by health care providers alone. The dialogue surrounding vaccines and their advantages and risks is a societal enterprise that needs to engage vaccine experts, the vaccine industry, public health authorities, specialists in social networks, social media and behavioural scientists, parent groups, and other stakeholders involved with public health. This chapter represents my effort to bring readers into the clinical settings with which I am most familiar, but improving public understanding of and confidence in vaccines is a responsibility we all share. NOTES 1 In a survey of paediatricians in the United States (Flanagan-Klygis, Sharp, and Frader 2005), 85 per cent of responders reported encountering partial vaccine refusal during the preceding twelve-month period. Paediatricians cited safety concerns as a top reason for parent refusal. In a recent review of the literature,

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Leask and colleagues (2012) identified five distinct parental attitudes toward vaccination, and they estimated the approximate proportions of each group (in parentheses) based on population surveys completed in four countries. The categories they identified were the following: the unquestioning acceptors (30–40 per cent), the cautious acceptors (25–35 per cent), the hesitant (20–30 per cent), the late or selective vaccinators (2–27 per cent), and the “refusers” of all vaccines (< 2 per cent). In the study’s framework, cautious acceptor parents vaccinate their children despite minor concerns. They may exhibit a “hope and pray” mentality, recognizing that vaccines carry rare but serious side effects while hoping that their child is not one to be affected. It is important to note that even parents appearing to be in the “unquestioning acceptors” category, being cognizant of the risks of side effects and aware that these risks are extremely small, may still harbour feelings of apprehension that their child might be the rare minority who experiences a serious adverse effect from a vaccine (Dubé, Vivion et al. 2015). Although such parents might not qualify as “hesitant” in this schema (indeed, they are simply aware of the potential risk of vaccines), it is important for the clinician to explore these unexpressed worries. 2 For more information on providing pain-free injections, see “Pain-free Injections in Babies,” About Kids Health, 8 November 2013, http://www.aboutkidshealth.ca/En/ HealthAZ/TestsAndTreatments/GivingMedication/Pages/Painfree-Injections-inBabies.aspx.

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Gust, D.A., A. Kennedy, I. Shui, P.J. Smith, G. Nowak, and L.K. Pickering. 2005. “Parent Attitudes toward Immunizations and Healthcare Providers: The Role of Information.” American Journal of Preventive Medicine 29 (2): 105–12. http://dx.doi. org/10.1016/j.amepre.2005.04.010. Halperin, B., R. Melnychuk, J. Downie, and N. Macdonald. 2007. “When Is It Permissible to Dismiss a Family Who Refuses Vaccines? Legal, Ethical and Public Health Perspectives.” Journal of Paediatrics and Child Health 12 (10): 843–5. Healy, C.M., and L.K. Pickering. 2011. “How to Communicate with Vaccine-Hesitant Parents.” Pediatrics 127 (Suppl 1): S127–33. http://dx.doi.org/10.1542/peds.20101722S. Jarrett, C., R. Wilson, M. O’Leary, E. Eckersberger, and H.J. Larson. 2015. “Strategies for Addressing Vaccine Hesitancy – A Systematic Review.” Vaccine 33 (34): 4180–90. http://dx.doi.org/10.1016/j.vaccine.2015.04.040. Kaufman, J., A. Synnot, R. Ryan, S. Hill, D. Horey, N. Willis, V. Lin, and P. Robinson. 2013. “Face to Face Interventions for Informing or Educating Parents about Early Childhood Vaccination.” Cochrane Database of Systematic Reviews 5: CD010038. http://dx.doi.org/10.1002/14651858.CD010038.pub2. Leask, J., S. Chapman, and S.C. Cooper Robbins. 2010. “‘All Manner of Ills’: The Features of Serious Diseases Attributed to Vaccination.” Vaccine 28 (17): 3066–70. http://dx.doi.org/10.1016/j.vaccine.2009.10.042. Leask, J., P. Kinnersley, C. Jackson, F. Cheater, H.E. Bedford, and G. Rowles. 2012. “Communicating with Parents about Vaccination: A Framework for Health Professionals.” BMC Pediatrics 12 (1): 154. http://dx.doi.org/10.1186/1471-2431-12-154. Leib, S., P. Liberatos, and K. Edwards. 2011. “Pediatricians’ Experience with and Response to Parental Vaccine Safety Concerns and Vaccine Refusals: A Survey of Connecticut Pediatricians.” Public Health Reports 126 (Suppl 2): 13–23. Lyren, A., and E. Leonard. 2006. “Vaccine Refusal: Issues for the Primary Care Physician.” Clinical Pediatrics 45 (5): 399–404. http://dx.doi. org/10.1177/0009922806289581. MacDonald, N.E. 2015. “Vaccine Hesitancy: Definition, Scope and Determinants.” Vaccine 33 (34): 4161–4. http://dx.doi.org/10.1016/j.vaccine.2015.04.036. MacDonald, N.E., and J.C. Finlay, and the Canadian Paediatric Society Infectious Diseases and Immunization Committee. 2013. “Working with Vaccine-Hesitant Parents.” Paediatrics & Child Health 18 (5): 265–7. Mergler, M.J., S.B. Omer, W.K. Pan, A.M. Navar-Boggan, W. Orenstein, E.K. Marcuse, J. Taylor, M.P. Dehart, T.C. Carter, A. Damico, et al. 2013. “Association of VaccineRelated Attitudes and Beliefs between Parents and Health Care Providers.” Vaccine 31 (41): 4591–5. http://dx.doi.org/10.1016/j.vaccine.2013.07.039. Mills, E., A.R. Jadad, C. Ross, and K. Wilson. 2005. “Systematic Review of Qualitative Studies Exploring Parental Beliefs and Attitudes toward Childhood Vaccination

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12 The Roots of Vaccine Hesitancy andré picard

If only every parent had access to the latest scientific studies on vaccination. If only they had a better grasp of the centuries-long efforts by public health officials to combat deadly infectious diseases. If only the media did a better job of informing – instead of confusing – the public about the real benefits and risks of vaccination. There are an endless number of “if onlys.” Medical research has given us the ability to prevent many, if not most, childhood infectious diseases, yet potentially deadly viruses and bacteria continue to spread and to harm children at an alarming rate because some parents are reluctant to embrace effective and affordable prevention methods like vaccination. A heaping tablespoon of scientific literacy, a dash of historical knowledge, and a generous pinch of media advocacy seems like the magic formula for bringing an end to vaccine hesitancy. If only it were that simple. If there is one thing this book makes clear, it is that vaccine hesitancy has been with us for as long as vaccination itself – from the first smallpox inoculation refusal through to the backlash against HPV vaccination – and it will likely continue no matter how powerful the research is, how much education is done, and how hard the media denounces the false claims that undermine public health messaging. In fact, one of the most common errors is to think of vaccine hesitancy as the product of a single, well-organized, cohesive “anti-vaccination movement.” In fact, while there are some family resemblances among different kinds of vaccine hesitancy, there are actually myriad social, political, cultural, and religious reasons that parents hesitate or refuse to have their children immunized. This book underscores the diversity of fears – real, imagined, religious, and cultural – and, as a result, the breadth of the challenge. Perhaps vaccine

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advocates should not expect science to trump faith for true believers: public health may never earn the trust of those who are profoundly mistrustful of public institutions, and the collective good may never be prioritized by those who see individual freedom as paramount. So, should advocates give up? Of course not. Public health and medical practitioners should do what they have always done: promote harm reduction. There is no single, simple response that will quell anti-vaccination fears. Rather, there must be a multitude of responses that try to address the concerns of specific audiences, all while recognizing that they cannot be completely assuaged. Pro-vaccination forces – who, like the anti-vaccine proponents, have a variety of motivations – need to make every effort to minimize harm to individuals and the broader community and, when new issues arise, like the easy spread of misinformation via social media, find new responses. However, vaccine supporters also need to keep the problem in perspective. Only about 2 per cent of parents refuse all vaccinations, and roughly 85 to 90 per cent of children entering kindergarten are at least partially vaccinated. It is the action (or inaction) of the 10 to 15 per cent of the population that is undermining herd immunity and allowing for the resurgence of measles, mumps, and pertussis, childhood diseases that were largely eliminated as a threat in Western countries. The vaccine hesitancy in this group (which, once again, is not a cohesive or organized movement) is driven principally by anxiety. Parents who are reluctant to vaccinate really want the best for their children, but they have come to believe, for a variety of reasons, that the risk of vaccination is greater than the risk of infectious disease. There is a mishmash of concerns at play here, notably, the notion that vaccines contain “poisons” like mercury, the belief that children’s immune systems will be overwhelmed by the multitude of vaccines (about two dozen shots in the first couple of years of life), and the reluctance to see their children suffer pain (albeit minor pain of needles) to protect against an invisible enemy. Many vaccine-hesitant parents genuinely believe that vaccination is unnecessary because they have never seen these once-common vaccine-preventable illnesses themselves. Consider that, a generation ago, there were some 350,000 measles cases a year; until recently, that number had dropped to just a few cases imported from other countries each year. In many ways, the overwhelming success of vaccination is one of the greatest barriers to getting people to buy in to continuing vaccination. Many of these parents also feel – again, sincerely – that there are effective alternatives to the traditional needle-in-the-arm vaccines. So-called

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complementary and alternative “medicine” (herbalism, homeopathy, chiropractic, naturopathy, acupuncture, etc.) has never been more popular. Some of this is driven by “chemophobia” (an excessive or irrational fear of chemicals) and the naturalistic fallacy, the notion that everything that is “natural” (including bacteria and viruses) is harmless and that everything manufactured (like vaccines) is harmful. Again, many of these views are driven by mistrust, especially in “Big Pharma” and “Big Brother” government regulators. Without a doubt, we have witnessed excesses and errors by the pharmaceutical industry, but these should not lead us to doubt the benefits of all the products they manufacture. As Bettinger and MacDonald explain in chapter 8 in this book, the effectiveness and cost-­ effectiveness of childhood vaccines are indisputable. The reality too is that many “alternative” products are highly profitable for their makers, and they are not subject to the same regulatory rules. The fact that many products sold as alternatives to vaccines, such as nosodes (so-called homeopathic “vaccines”), have been targeted by regulators is not part of a grand conspiracy, but, rather, it is due to the fact that their makers make grandiose claims with little or no evidence. There is no question that the media has played a significant role in fuelling these fears and beliefs or, at best, helping sow confusion and misunderstanding. Anti-vaccination is a minority opinion, but many are attracted to this form of scepticism by what they read and hear in newspapers, on television, and on the Web and social media. Take the infamous case of Andrew Wakefield, discussed in several chapters of this book, who published a paper in The Lancet in 1998 purporting to show a link between the MMR (measles, mumps, and rubella) vaccine and autism, a developmental disorder. The number of childhood vaccinations was on the rise and so was the incidence of autism: it was an association, but there was no cause-and-effect. Yet Wakefield’s paper (since demonstrated to be based on fraudulent data and retracted) sparked a debate (or perhaps “media frenzy” is a more accurate term) that lasted some fifteen years and did untold damage. There was never much of a scientific debate; the theory that vaccines cause autism never had any credibility, let alone biological plausibility. But Wakefield’s self-interested work (it turns out that he had developed a measles vaccine that he hoped would become an alternative to the MMR and make him wealthy) provided a response to a question that parents desperately wanted answered, “Why the soaring rates of autism?” and it proposed an explanation – ­vaccination – that many parents were all too willing to accept. The fears about vaccination did not begin with Wakefield’s “research,” but they helped create a perfect storm that became a ready excuse for millions of

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people to turn their backs on immunization. In fact, the vaccines-cause-autism saga has led many to rethink the notion of objectivity, especially when it comes to reporting on health issues. As Curtis Brainard (2013) wrote in an exhaustive analysis of Wakefield media coverage in the Columbia Journalism Review, “In such cases, ‘balanced’ coverage can be irresponsible, because it suggests a controversy where none exists.” False balance can do much damage, particularly in health reporting. It is part of a journalist’s job to distinguish between evidence and nonsense; it is not good enough to sit on the fence and bleat about balance, especially when children’s health is at stake. And, to be fair, there are many journalists who have taken a leadership role and who have been powerful advocates for vaccination (and, at times, much more powerful spokespeople than scientists), such as Seth Mnookin (author of The Panic Virus [2011]) and Ben Goldacre (who writes the popular Bad Science column for The Guardian), but they cannot single-­ handedly combat the constant flow of alarmist anecdotes and pseudojournalism that often dominates the vaccination discussion. The media have to take more responsibility for getting the facts right, especially on crucial issues in which the public is looking to them for guidance. One has to recognize, too, that the Wakefield controversy coincided with fundamental changes in the media landscape. The rise of social media has made it easier than it has ever been to spread erroneous messages to a broad audience; it has also made it far simpler for people to confirm their biases and profoundly influence health-related behaviours, both consciously and unconsciously. This democratization of information has, for the most part, been a positive development, but it has made the job of promoting public health initiatives – and vaccination, in particular – more difficult than it has ever been. In the Internet age, it’s possible to find “evidence” to confirm and reinforce any belief or prejudice and to relegate science to the background. So what is the best way to ensure that the greatest number of children possible benefit from vaccination and that the spread of childhood illnesses is minimized, if not eliminated? Censorship is not the answer. It is not possible to shut down every website that touts an anti-vaccination message or to stifle every social media site where a parent expresses doubts about the benefits or safety of immunization. Rather, scientists need to depend on science. Efforts are required to make vaccines safer and more effective (and it should be noted that the improvements have already been significant over time), and vaccine delivery needs to be improved by taking pain (and needles) out of the equation. There also need to be counter-messages, continued attempts to introduce factual information into the often emotional discussion, even if there is not

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always enthusiasm for listening. For every anecdotal tale of a vaccine-damaged child, there needs to be reminders of the damage done by infectious disease to countless other children. Of course, this will always be an uphill battle, because it is difficult to make a compelling human interest story of a child who never falls sick or does not die because vaccination worked. But such is the lot of public health. As frustrated as health professionals may be with the vaccine-hesitant, heavyhandedness is not the best approach. The goal should be to persuade, not to prosecute. For parents who are reluctant or who outright refuse to vaccinate their children – and again, this is a small minority – legal action should be a last resort. Religious beliefs need to be respected, but they need to be balanced with other rights. Opting out of vaccinations should be difficult. At the very minimum, parents who are hesitant should receive counselling on the importance of immunization for their own children as well as to the community overall. Atypical or anti-rational (or even extrarational, to use Bramadat’s term in this volume) cultural convictions should not be sufficient grounds for allowing children to be exempted from immunizations required to enrol in school, and they should not be imposed on health professionals working in hospitals and other health care settings. On a personal level, paediatricians and family physicians need to engage in dialogue with vaccine-hesitant parents rather than dismiss them out of hand. On a societal level, public health officials have to be more willing to roll up their sleeves and engage anti-vaccination proponents directly. For far too long they have sat back, arguing that engaging in debate will give credence to a vocal, marginal minority. However, silence hasn’t worked; it has simply created a culture of uncertainty that has made it much easier for people to delay and refuse vaccinations. The science is settled: vaccination works. It provides much benefit with little risk. What remains unsettled – and unsettling – is the best way to motivate the vast majority of the population to embrace this message, which often comes down to communicating complex scientific concepts like benefit and risk and engaging in conversations about the sort of religious and cultural roots of vaccine hesitancy addressed in this book. Good communication – having a message and delivering it clearly and consistently – is the most powerful weapon in the public health armamentarium. Vaccine hesitancy is not a black-and-white issue. This book helps us to understand the complexity and variety of beliefs and fears and how they have evolved over time (or not). It is also a reminder that those who are not aware of history are doomed to repeat it. It is positively eerie to recognize the arguments Dr. Dagenais made against smallpox vaccination in 1875 in the claims made by Dr. Mercola to oppose measles vaccination in 2014. Plus ça change …

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The most powerful message in this book is one that emerges between the lines: vaccine advocates keep fighting the same old battles because, time and time again, they have missed golden opportunities – notably, those that arise when there are large outbreaks of infectious disease – to more vigorously promote vaccination and, more broadly, child health. Vaccine advocates cannot afford to be indifferent to the power of vaccination or resigned to the fact that there will always be people who are hesitant about vaccines. It would be tragic if, several years hence, vaccine supporters were left looking back and wondering: “If only we had done more.” REFERENCE Brainard, Curtis. 2013. “Sticking with the Truth: How ‘Balanced’ Coverage Helped Sustain the Bogus Claim that Childhood Vaccines Can Cause Autism.” Columbia Journalism Review (May/June). http://www.cjr.org/feature/sticking_with_the_ truth.php. Mnookin, S. 2011. The Panic Virus: A True Story of Medicine, Science, and Fear. New York: Simon and Schuster.

13 Public Health and Personal Heuristics noni e . macdonald

As Goethe (1774) noted over a hundred years ago, “Belief is not the beginning but the end of all knowledge … We are so constituted that we believe the most incredible things; and, once they are engraved upon the memory, woe to him who would endeavor to erase them.” As a number of the authors in this book suggest, this is as true for those who want to challenge beliefs about vaccines and health care as it is for those who would like to dispute religious claims. Maintaining good health has been a core human activity since the dawn of humankind. Throughout the day, every day, adults make many decisions aimed at keeping themselves, their families, and their communities healthy: eating healthy food, getting enough sleep and exercise, handwashing, personal hygiene, and so on. While over 80 per cent of Canadian parents ensure that their children receive routine immunizations in a timely fashion, there are some parents, health care providers, and members of the public who remain vaccine-hesitant (Gust et al. 2008; Salmon et al. 2005). A 2011 major poll found that while the overwhelming majority of Canadian families had children whose immunizations were fully up to date, among those whose children were not properly vaccinated, 28 per cent said the vaccine(s) was unnecessary, arguing that the human body can take care of itself; 16 per cent had concerns about vaccine safety; and another 16 per cent did not believe in vaccines for religious or philosophical reasons.1 As well, 5 per cent of those polled did not see childhood vaccines as effective, and 10 per cent were undecided if they were of benefit or not. Although safety is a major concern for many vaccine-hesitant parents (Salmon et al. 2005), even some health care workers are anxious about vaccines (Riphagen-Dalhuisen, Gefenaite, and Hak 2012). How does vaccine hesitancy continue in light of strong scientific evidence that the benefits of vaccines outweigh their risks, disease risks in the unimmunized are large, and disease complications are serious?

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Several heuristics – cognitive shortcuts everyone uses subconsciously to simplify complex decision-making – work to undermine belief that vaccines are necessary and safe (MacDonald, Smith, and Appleton 2012). For example, the availability heuristic (judging an event as frequent or likely to occur only if one can easily imagine or recall it) may lead a parent to readily recall a media or friend’s story purporting to show that autism is due to vaccines, while he/she might never have seen or heard of a child suffering with measles, pneumonia, or encephalitis. The belief that becomes cemented in the parent’s mind – often at the subconscious level – is that vaccines are dangerous and the diseases they are meant to prevent are not. Parents may believe at the conscious level that they are still undecided, but their decision has often already been determined at an unconscious level (Galdi, Arcuri, and Gawronski 2008). Exposure to the Internet, social media, and traditional media can also contribute to decisions not to vaccinate (Galdi, Arcuri, and Gawronski 2008; Scullard, Peacock, and Davies 2010). Just five to ten minutes on an anti-vaccine website can change a person’s vaccine perceptions and intention to vaccinate (Betsch et al. 2010). Similarly, vaccine-critical blogs have had a very negative effect (Nan and Madden 2012). Despite anti-vaccine websites being filled with logical errors, wishful thinking, and distortions of reality (Jacobson, Targonski, and Poland 2007), the stories and images of damaged children present on them are so powerful that they stick in the unconscious mind and can negatively influence parental vaccine decision-making. If scientific evidence was enough, no one would smoke, no one would eat junk food, all would exercise daily, and everyone would be fully immunized. However, a person’s mind filters the information that is presented, so when new information fits with the person’s existing beliefs, it is often selected or recalled because it reinforces those beliefs. If new information does not fit pre-existing beliefs, it tends to be rejected. Many other problematic, or at least puzzling, forms of reason are employed by parents and others to make decisions about vaccines, and many of these approaches are explored in this book. Given the importance of high immunization coverage for the health of individuals as well as the health of the community, it is crucial to be able to shape vaccine beliefs in a positive manner as well as to overcome negative beliefs. However, vaccine beliefs and concerns vary widely. The authors of this book have chosen to examine the cultural and religious roots of vaccine hesitancy in Canada. They provide reasoned arguments for eschewing the simplistic “just provide the evidence” strategy currently used to address many vaccine concerns. A better understanding of the roots of these concerns, how these continue to thrive, and how Canadian clinicians, scientists, and public health advocates work to improve vaccines can lead to more effective, coherent, and

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respectful strategies to address apprehensions about what is arguably one of the most significant public health advances in the last millennium. NOTE 1 See Survey of Parents on Key Issues Related to Immunization: Final Report, September 2011, http://resources.cpha.ca/immunize.ca/data/1792e.pdf.

REFERENCES Betsch, C., F. Renkewitz, T. Betsch, and C. Ulshöfer. 2010. “The Influence of VaccineCritical Websites on Perceiving Vaccination Risks.” Journal of Health Psychology 15 (3): 446–55. http://dx.doi.org/10.1177/1359105309353647. Galdi, S., L. Arcuri, and B. Gawronski. 2008. “Automatic Mental Associations Predict Future Choices of Undecided Decision-Makers.” Science 321 (5892): 1100–2. http:// dx.doi.org/10.1126/science.1160769. Goethe, Johann Wolfgang. 1774. The Sorrows of Young Werther. Leipzig: Weygand'sche Buchhandlung. Gust, D.A., N. Darling, A. Kennedy, and B. Schwartz. 2008. “Parents with Doubts about Vaccines: Which Vaccines and Reasons Why.” Pediatrics 122 (4): 718–25. http://dx.doi.org/10.1542/peds.2007-0538. Jacobson, R.M., P.V. Targonski, and G.A. Poland. 2007. “A Taxonomy of Reasoning Flaws in the Anti-Vaccine Movement.” Vaccine 25 (16): 3146–52. http://dx.doi. org/10.1016/j.vaccine.2007.01.046. MacDonald, N.E., J. Smith, and M. Appleton. 2012. “Risk Perception, Risk Management and Safety Assessment: What Can Governments Do to Increase Public Confidence in Their Vaccine System?” Biologicals 40 (5): 384–8. http://dx.doi. org/10.1016/j.biologicals.2011.08.001. Nan, X., and K. Madden. 2012. “HPV Vaccine Information in the Blogosphere: How Positive and Negative Blogs Influence Vaccine-Related Risk Perceptions, Attitudes, and Behavioral Intentions.” Health Communication 27 (8): 829–36. http://dx.doi.org/ 10.1080/10410236.2012.661348. Riphagen-Dalhuisen, J., G. Gefenaite, and E. Hak. 2012. “Predictors of Seasonal Influenza Vaccination among Healthcare Workers in Hospitals: A Descriptive MetaAnalysis.” Occupational and Environmental Medicine 69 (4): 230–5. http://dx.doi. org/10.1136/oemed-2011-100134. Salmon, D.A., L.H. Moulton, S.B. Omer, M.P. DeHart, S. Stokley, and N.A. Halsey. 2005. “Factors Associated with Refusal of Childhood Vaccines among Parents of

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School-Aged Children: A Case-Control Study.” Archives of Pediatrics & Adolescent Medicine 159 (5): 470–6. http://dx.doi.org/10.1001/archpedi.159.5.470. Scullard, P., C. Peacock, and P. Davies. 2010. “Googling Children’s Health: Reliability of Medical Advice on the Internet.” Archives of Disease in Childhood 95 (8): 580–2. http://dx.doi.org/10.1136/adc.2009.168856.

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CONCLUSION

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14 Continuing the Conversation paul bramadat , julie a . bet tinger , and maryse guay

Overview When we began talking about vaccine hesitancy and rejection in Canada, the editors and authors disagreed on many things. After all, among us are physicians, nurses, humanists, social scientists, natural scientists, and policymakers from across the country, not to mention the parents, children, grandparents, siblings, partners, neighbours, and friends of people with a range of attitudes about vaccines. So, rather predictably, our respective approaches to vaccine hesitancy and rejection ranged, often, quite widely. The conversations have been lively, to say the least. Throughout our meetings and discussions, we did agree on at least three things: (1) vaccine hesitancy and rejection pose complex and troubling challenges for the health of our society, (2) the ways vaccine advocates promote vaccinations sometimes alienate members of particular subcultures, and (3) the research on what we are calling the religious and cultural reasons for vaccine hesitancy is not yet sufficiently sophisticated to provide clear guidance to scholars, policymakers, and clinicians. In fact, although news coverage of occasional outbreaks of vaccine-­ preventable diseases in Canada and abroad alerts us to specific problems, arguably very little is known among academics, clinicians, and the general public about the scale, growth, and origins of the trend towards and implications of vaccine hesitancy in general.1 The purpose of this book has not been to repudiate vaccine hesitancy. After all, the phenomenon is complex, with roots in culture, religion, legitimate scientific concerns, unfounded rumours, junk science, wishful thinking, fears about the power of corporations and governments, and simple uncertainties about the facts of vaccine science and epidemiology. As such, no single book could – or should – aim to eliminate hesitancy or alleviate all concerns about vaccines. Our goal with this project was, rather, to provide

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readers with a broad account of the medical, scientific, social, political, religious, and personal forces at play in such phenomena. Our hope is that this book will inspire among our colleagues – and within the broader society – a comprehensive conversation about vaccines and vaccine hesitancy. In pursuit of this objective, authors have reflected critically on the history of vaccines as well as their role in health promotion, adverse effects, and monitoring; moreover, they have considered the nature and effect of those individuals and communities that, for one reason or another (or for several), do not trust vaccines (or “Western medicine” in general) and whose hesitancy about vaccines are thus weakening the protection of the larger population. Before we try to articulate the questions to which other authors might turn their attention in the near future, it would be helpful to summarize some of the key claims made in this book. First, as several authors have demonstrated, vaccine hesitancy is not a new phenomenon. Ever since the emergence of vaccines, there has been concomitant concern over the effectiveness of vaccines, the role of government and pharmaceutical companies in the promotion and development of vaccines, the ingredients of vaccines, and the rights of government as well as of physicians and scientists to interfere in what is described as God’s or nature’s plans. Vaccine hesitancy has a history, then, but equally important is the fact that its history needs to be understood as intractably linked to other social, scientific, cultural, and political forces. In each place and time, the extrascientific forces correlated with hesitancy will be different – a century ago, tensions between English Protestants and French Roman Catholics affected the ways vaccines were considered in Quebec, for example – but some of the forces appear to be quite enduring. Of relevance to the present forms of hesitancy are dramatic changes in opportunities for women and parenting roles, the rise of the Internet as a major source of popular medical information, and a general decline in the prestige and authority once enjoyed by physicians, politicians, scientists, and other social leaders. Second, vaccinating oneself or one’s child is not a risk-free decision, and adverse effects do sometimes occur. Nonetheless, the evidence of the value of vaccines in prolonging and improving the lives of Canadians and people around the world has never been stronger. Moreover, a dispassionate assessment of the vaccine-monitoring mechanisms now in place in many Western societies should inspire confidence. Of course, these systems are not foolproof, and they vary significantly from one society to another, but a sober consideration of recent responses to safety events illustrates that academics, government representatives, patients, and clinicians are able to work together diligently to improve the safety of vaccines and mitigate any inherent risk. Although debate and uncertainty over vaccines continues in the public arena, among scientists

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and clinicians there is, in fact, virtually no argument about the core value of vaccines. Here one sees an interesting analogy to the scepticism over climate change, especially in the United States, where the issue is debated ad nauseam in the media even long after a very strong consensus has emerged among scientific experts. Third, people hesitate about or completely reject vaccines for a variety of reasons. Indeed, even using the term “reasons” is somewhat misleading. In fact, an investigation into health decisions that revolves around the assumption that people make health choices on the basis of a rational assessment of the options at hand obscures the fact that many of the forces that determine or influence our medical decisions, such as social norms, individual reactions, and personal predilections, are at best opaque, if not entirely invisible, to each of us, and they are certainly not always rational. It is not impossible to become aware of such forces, of course, but it would be naive to assume that we would be able to fully grasp, much less master, these forces in order to make perfectly evidencebased decisions. Values, intuitions, emotions, religious convictions, and cognitive presuppositions are always at work, even though we might want to keep them in check when making important health decisions. As such, an approach to vaccine-hesitant Canadians that relies strictly on a “cognitive deficit” model (which assumes a patient or parent is ignorant of the empirical argument to be made for vaccines) will flounder, because hesitancy is not a simple product of a cognitive error. Fourth, religious and cultural forces associated with vaccine hesitancy are often discussed separately, with the former being of interest only when a religious leader or group formally condemns vaccines and the latter thought to be the main source of declining vaccine compliance. There is some justification in the tendency to distinguish between those relatively few official institutional religious rejections or suspicions of vaccines, on the one hand, and those claims made against immunizations that are more subtly linked to broader cultural anxieties about nature, “Big Pharma,” government authority, and what we might call “chemophobia,” on the other hand. However, it is also valuable to wonder if indeed many – though by no means all – kinds of religious and cultural vaccine hesitancy share some common features. In particular, several authors in this book have discussed the ways “magical,” extrarational, and yet nonetheless internally consistent thinking about both vaccines and religion often resembles one another and conflict in similar ways with the conventional scientific consensus. Fifth, one of the core claims of this book is that it is not just possible but in fact necessary to engage in meaningful conversations with vaccine-hesitant or rejecting parents or patients. Initially some of our colleagues were doubtful that

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it would be very fruitful to interact with people who often espoused hostile or eccentric views of science and medicine. It is worthwhile to note that scholars of religion have demonstrated that irreconcilable breakdowns in communication between people are actually very much exceptions to the norm. In fact, it is quite ordinary for people to vacillate between speaking about empirically verifiable claims, to speaking about emotionally compelling intuitions, to speaking about (or out of) ineffable religious sensibilities. Not only do we each speak in these distinct manners with neighbours, colleagues, and friends, but it is arguably the case that in each of us, to varying degrees, these intellectual and epistemological sensibilities coexist (often without even being aware that we are switching “registers,” so to speak). These insights do not mean – of course – that exchanges between vaccine advocates and critics will be free of frustration or rancour. Nonetheless, an awareness of what we might call social as well as personal cognitive diversity is humbling and might help us approach critics in a more productive manner. Finally, several authors observe that scientific literature and clinical practice both seem to confirm that the best way for advocates to encourage parents and patients to consider vaccines seriously is by developing long-term relationships. While it is important to convey the medical consensus around vaccines (including their known risks) to hesitant individuals, families, and groups, it is impractical and also patronizing to expect all patients and parents to set aside their anxieties immediately. As is the case with so-called “inter-faith” dialogue between members of often radically different religious communities (and between believers and atheists), the investment in time arguably reaps greater social dividends than dogged winner-takes-all debates about divergent theological convictions. Onward So where do we go from here? This book marks a major contribution to the Canadian dialogue regarding vaccines. However, a further investment of time and resources is required to continue the conversation. The following paragraphs highlight some of the glaring systemic as well as cultural issues to which government leaders, researchers, health care providers, and public health professionals need to direct their attention. The data and theories explored in this book suggest, among other things, that local, provincial, and federal governments should support vaccination through funding, education, research, and policies. In 2013, Canada ranked twenty-eighth out of twenty-nine affluent countries for immunization coverage (UNICEF 2013). This fact is quite troubling. Improved measurement and tracking of vaccine coverage on a regular basis is critical. In particular, the

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adoption of a national immunization schedule by all thirteen provinces and territories with standardization of immunization programs across the country, based on the best scientific evidence, could be embraced by all public health practitioners and health providers. Although, at this point, the wellentrenched principal of provincial and territorial autonomy in health care programs has prevented the development of a national strategy, it is hard to justify the widespread differences in immunization schedules across the country. Such differences breed confusion for parents and health care providers and inadvertently imply that there is little consensus around the importance of vaccination. One obvious way to standardize approaches to vaccines – and to monitor them even more effectively – would be to use electronic immunization registries in all jurisdictions. Individual immunization records need to be portable and accessible to the individual and to a range of health care providers at multiple facilities. Moreover, registries need to provide a reliable measure of vaccine coverage in the population. Since vaccines are delivered in various manners, by various professionals (physicians, nurses, etc.), and in various places (at schools, doctors’ offices, pharmacies, workplaces, etc.), we need to make our immunization registries far more comprehensive than they currently are.2 A final policy issue that could be addressed by our political and health leaders is compensation for the very small numbers of individuals who are injured by a vaccine. Such compensation systems are already in place in the United States and Quebec; it is time the rest of the country tackled this issue, as well. If we are asking individuals to be vaccinated for the “greater good,” we need to take care of those who do indeed suffer the rare but real adverse event from vaccination. Until we are willing to confront this issue as a community, vaccine-hesitant individuals will continue to have a powerful and valid objection to vaccination. Beyond the systemic and policy issues, an improved understanding of the individual and cultural factors that contribute to vaccine hesitancy is crucial. Of particular relevance to the writers of this book, Canada’s religious landscape is shifting quickly and dramatically. The growth among mostly non-Western religious communities (e.g., Muslims, Hindus, Sikhs, and Buddhists) as well as among relatively recent Christian immigrant communities from non-­European societies will likely require health care providers to think creatively about new ways to promote vaccines in Canadian society. In most cases, immigrant Canadians are quite supportive of vaccines, but it will be important for vaccine advocates to be sensitive to the social, moral, religious, and political concerns of these groups, lest misunderstandings develop around rumours (some of

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which may fester more easily within groups that have yet to integrate fully into Canadian society) and new vaccines, such as that for HPV (which often inspire debates over youth sexual activity and parental control). The continued strength of fundamentalist forms of Christianity, even within regions generally characterized by secular liberalism, is worth considering as well. In particular, ethnographic research would help to determine ways to promote constructive and enduring relationships between the dominant liberal community (and its concomitant conventional biomedicine) on the one hand and often rather insular evangelical groups on the other hand. Such research could very well reduce the kinds of disease outbreaks we have seen in recent years in parts of British Columbia, for example. In addition to richer ethnographic research among religiously motivated vaccine-hesitant individuals and groups, it would also be valuable to delve more deeply into the theologies, philosophies, theodicies (explanations for why people suffer), and habits of thought connected with these communities. As we suggested elsewhere in this book, most people do not live systematically or “in their heads,” so understanding the theological roots of the communities in question would certainly not give one a simple way to address the concerns the groups have. However, knowing something about the intellectual and spiritual principles at work in each case would help to narrow the gap that often separates vaccine-hesitant communities and vaccine advocates. In addition, it is important to consider the connections between growing vaccine hesitancy in our society and the extremely rapid growth of a cohort that eschews institutional religion but continues to espouse views of the universe that are quite clearly tied to a range of spiritual sensibilities. Many of the individuals and groups that have appeared in this book – especially those born since the late 1960s – describe themselves as “spiritual but not religious.” Although they may not be officially active or exclusive members of any form of traditional religion, it is clear that their approaches to nature, the cosmos, capitalism, personal autonomy, biomedicine, “alternative” medicine, and their own health are at least partially spiritualized. As such, it is quite appropriate and, indeed, probably necessary to apply to these communities and individuals some of the same analytical tools one might use when studying other forms of religion and spirituality. Quantitative and qualitative fieldwork can be used to describe and interpret vaccine-hesitant communities, groups, and individuals, including health professionals. This involves teaching and training for the health care profession and the inclusion of vaccine-hesitant health professionals in fieldwork and engagement activities. In addition, mapping studies that anticipate new disease outbreaks on the basis of changes in religious demographics could identify

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communities at risk. Research that monitors emerging cultural discourses on science, nature, government, and the human body could identify and address new trends, potentially before these cultural shifts influence vaccine acceptance. Such research will create opportunities to engage with these communities and work towards solutions that respect public health needs, individual autonomy, and religious or spiritual beliefs and practices. Regular personal interactions between such vaccine-hesitant people, clinicians, and scholars trained in the academic study of religious and health discourses might lead to the discovery of religiously and culturally acceptable ways of promoting vaccination or, failing that, advances towards other forms of disease control. Finally, we should not ignore the need for an improved understanding of vaccine hesitancy internationally and the need for research to examine how this issue is addressed in other national settings (Larson, Jarrett et al. 2014). As many of the authors in this book have shown, this is not just a Canadian phenomenon; indeed, many of the discourses that underlie vaccine hesitancy in Canada are international not just in their source but in their mediation. Here, it is important to remember the power of the Internet in both the spread of vaccine hesitancy and its amelioration (Larson, Wilson et al. 2014). The stories, anecdotes, conspiracy theories, rumours, half-truths, and truths that coexist on the now-sizable portion of the Internet devoted to vaccines are truly borderless. Nonetheless, these discourses take root in and disproportionately affect very particular communities, and they cannot be understood apart from those same communities. As such, the appropriate lens for viewing vaccine hesitancy is “glocal” – both global and local. Fortunately, there is growing awareness of this phenomenon. Indeed, in 2012, the World Health Organization (WHO) formed the SAGE (Strategic Advisory Group of Experts) working group, which deals with vaccine hesitancy to “define vaccine hesitancy and its scope” (WHO 2014, 7) and to “undertake a review of vaccine hesitancy in different settings” (14). The working group membership includes two Canadian experts who have also contributed to this book (Eve Dubé and Noni MacDonald). The group released a report in 2014 that both defined vaccine hesitancy and identified research gaps and strategies to address it. Among the research gaps identified was the need for further exploration of the cultural and religious factors that contribute to hesitancy internationally. Although the status of political and medical leaders may have declined, their active engagement in conversations about vaccine hesitancy is critical to maintaining the progress we have seen in Canadian and international public health. While over a century of evidence establishes the value of vaccines as a crucial public health tool, vaccine hesitancy is growing in many societies. As such, we are now at a troubling point in our history. Vaccine hesitancy has emerged as a

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Paul Bramadat, Julie A. Bettinger, and Maryse Guay

major public health dilemma, and the best way we can all respond is to advance research into vaccines and public health and to include as many voices as possible in the ongoing public debates about vaccine hesitancy. The authors and editors of this book set out to contribute to the debates around vaccines in our society and to create a context in which the complex forms and histories of vaccine hesitancy might be discussed in a respectful, critical, and open manner. Our hope is that this will be just the beginning of a very long and productive conversation. NOTES 1 In the interest of brevity, for the rest of this chapter we will refer to the overarching concept of vaccine hesitancy – vaccine rejection is on one end of the spectrum of hesitancy. 2 While public health registries such as Canada’s Panorama may eventually make some records accessible to public health officials, they are unlikely to contain complete population level information and will still be inaccessible to many health care providers who may need to check on an individual patient’s vaccination status. Moreover several provinces have opted out of Panorama, thus making national comparisons difficult if not impossible. Mobile applications, such as http://www. immunize.ca, provide an electronic record on an individual’s smartphone and at least allow an individual to track their own information and potentially provide it to their health care providers. However, such a solution does not meet the needs for public health monitoring and will not provide adequate estimates of population coverage. A union between an individual application and a public health database is required.

REFERENCES Larson, H.J., C. Jarrett, E. Eckersberger, D.M. Smith, and P. Paterson. 2014. “Understanding Vaccine Hesitancy around Vaccines and Vaccination from a Global Perspective: A Systematic Review of Published Literature, 2007–2012.” Vaccine 32 (19): 2150–9. http://dx.doi.org/10.1016/j.vaccine.2014.01.081. Larson, H.J., R. Wilson, S. Hanley, and P. Paterson. 2014. “Tracking the Global Spread of Vaccine Sentiments: The Global Response to Japan’s Suspension of Its HPV Vaccine Recommendation.” Human Vaccines & Immunotherapeutics 10 (9): 2543–50. http://dx.doi.org/10.4161/21645515.2014.969618.

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UNICEF. 2013. Innocenti Report Card 11: Child Well-Being in Rich Countries: A Comparative Overview. April. Florence: UNICEF Office of Research. https://www. unicef-irc.org/publications/pdf/rc11_eng.pdf. World Health Organization (WHO). 2014. Report of the SAGE Working Group on Vaccine Hesitancy. 1 October. Geneva. http://www.who.int/immunization/sage/ meetings/2014/october/1_Report_WORKING_GROUP_vaccine_hesitancy_ final.pdf.

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Appendix

Preamble Probably the most widely cited study of religious perspectives on vaccines was published in 2013 in the journal Vaccine. Written by John Grabenstein (2013), the article provides an interesting account of some of the existing textual and religious assertions, practices, and sensibilities that inform the way members of the major world religions approach their own health and, more broadly, their relationship to public health. Of course, most religious communities emerged centuries before debates about vaccination appeared in the public domain and, as such, the practice is not addressed in the sacred texts. Moreover, Grabenstein’s review of the distinctive approaches to human health – and science in general – that one can identify in the world’s religions does not really explain the ways actual individuals in these communities might approach vaccination, nor does it really predict whether or not or in what ways they might invoke religious ideas and practices in their decisions with regard to vaccines. This is just a reminder – if one was needed – that people do not always act in the ways their religious groups, or, for that matter, their social and political groups, suggest they should (or must). For example, many Roman Catholics use birth control, regardless of official prohibitions; many Muslims and Jews eat pork, although this would be deemed very problematic by religious leaders; and many Sikhs observe and value caste distinctions that their tradition has officially rejected. These are not examples of hypocrisy – they are illustrations of the complex relationship that exists between individuals and the groups to which they belong. People stand at the intersection of many perspectives, world views, ideologies, and identities. As such, the simple fact

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that an individual belongs to a group that may embrace vaccines – Lutherans or Anglicans, for example – or a group that generally does not embrace vaccines – Christian Scientists, for example – does not tell you a great deal about whether the individual will necessarily follow the norms of his/her group(s). At most, knowledge of the group’s official or even common stance establishes a starting point for a conversation, but individual decisions do not necessarily flow in a linear manner from a group’s norms. In practice, decisions about vaccines (just like decisions about other important personal and public matters) emerge out of complex combinations of ideas, feelings, traditions, and communal pressures. In an effort to make a direct account of the thoughts and perceptions of vaccine-hesitant individuals and groups available to readers, we sought formal statements from religious groups opposing vaccination – either all or particular vaccines. Many readers will not be surprised that due to the fact that vaccine acceptance remains a powerful cultural norm, very few large mainstream communities have made official claims against vaccines. Nonetheless, as several authors in this book have demonstrated, there are “cultural” or “subcultural” communities that are hesitant about vaccines, and there is evidence that small cohorts within relatively established religious communities (Roman Catholics, Christian Reformed Protestants, Muslims, and Jews), as well as groups that scholars call “new religious movements” (such as Christian Scientists but also groups that would have been defined as “cults” in the past), have eschewed vaccines. In general, most communities are vaccine-positive or vaccine-neutral, but they contain within them ideas, subcultures, and general concerns about the scientific and social status quo in which vaccines come to be seen as emblematic of a variety of social forces. Vaccine hesitancy emerges from these broader concerns and from the other forces discussed in this book. We have distinguished in this book and in this appendix between religious and cultural forms of vaccine hesitancy; several of us have tried to blur this distinction, however, in order to suggest that there are some important similarities between most communities of people who are suspicious of the value of vaccines or the dominant biomedical paradigm. As Bramadat has outlined in chapter 1 in this volume, there are, arguably, some similar patterns of thought and group definitions at work in many of the religious and cultural subcultures and cohorts considered in this book. In this appendix, we present a sample of excerpts from websites and documents associated with some of the main vaccine-hesitant groups discussed throughout this book. We have also included weblinks for the groups and movements discussed.

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Religious Examples

1.  Roman Catholicism national catholic bioethics centre

The National Catholic Bioethics Center believes the Catholic reverence for human life can help shape societal attitudes and public policy for the benefit of all, particularly for those who are weak and vulnerable. The Center pledges its service to clergy, religious, and laity, especially those in the health care professions, as they face daily ethical challenges in the care and treatment of patients. In light of the convergence of civil law and scientific advancement, the Center also seeks to reach those who influence law and public policy. Indeed, the Center’s mission transcends religious boundaries in its application of ethical reflection consistent with the teachings of the Catholic Magisterium to society-at-large as we grapple with the complex issues posed by the rapid developments in medicine, science, and biotechnology. Source: http://www.ncbcenter.org/about-us/our-pledge/.1

The NCBC site provides detailed responses to Catholics’ questions about vaccines. See, for example, the “Statement of the Pontifical Academy for Life,” (2005) which ends with the following assertion: To summarize, it must be confirmed that: - there is a grave responsibility to use alternative vaccines and to make a conscientious objection with regard to those which have moral problems; - as regards the vaccines without an alternative, the need to contest so that others may be prepared must be reaffirmed, as should be the lawfulness of using the former in the meantime insomuch as is necessary in order to avoid a serious risk not only for one’s own children but also, and perhaps more specifically, for the health conditions of the population as a whole – especially for pregnant women; - the lawfulness of the use of these vaccines should not be misinterpreted as a declaration of the lawfulness of their production, marketing and use, but is to be understood as being a passive material cooperation and, in its mildest and remotest sense, also active, morally justified as an extrema ratio due to the necessity to provide for the good of one’s children and of the people who come in contact with the children (pregnant women); - such cooperation occurs in a context of moral coercion of the conscience of parents, who are forced to choose to act against their conscience or otherwise, to

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put the health of their children and of the population as a whole at risk. This is an unjust alternative choice, which must be eliminated as soon as possible. Source: http://www.ncbcenter.org/files/1714/3101/2478/vaticanresponse.pdf.

See also “Infant Immunization: The Catholic Parents’ Guide,” by Donald J. Henz, associated with the Children of God organization, which describes itself as the “pro-life world leader in the campaign for ethical vaccines, medicines and consumer products,” https://cogforlife.org/catholicguide.pdf.

2.  Christian Science Mary Baker Eddy wrote in The First Church of Christ, Scientist and Miscellany, Rather than quarrel over vaccination, I recommend, if the law demand, that an individual submit to this process, that he obey the law, and then appeal to the gospel to save him from bad physical results. Whatever changes come to this century or to any epoch, we may safely submit to the providence of God, to common justice, to the maintenance of individual rights, and to governmental usages. This statement should be so interpreted as to apply, on the basis of Christian Science, to the reporting of a contagious case to the proper authorities when the law so requires. When Jesus was questioned concerning obedience to human law, he replied: “Render to Caesar the things that are Caesar’s,” even while you render “to God the things that are God’s.” (220) Source: Mary Baker Eddy, The First Church of Christ, Scientist and Miscellany 1883–1896, 2013, https://mbeinstitute.org/Prose_ Works/Miscellany_PartThree.html.

Since Canadian laws in most provinces do not “demand” or require vaccinations, the onus is placed on individual Christian Scientists to determine how they will apply Mary Baker Eddy’s advice.

3.  Reformed Protestants Although most Christians associated with the Reformed stream of Protestantism support vaccination, there is a small cohort that rejects the practice. The Association for Reformed Political Action posted the following statement:

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Vaccine Controversy: Reformed Churches Speak Out Published on Monday, 17 March 2014, 14:03 Some parts of the Reformed community are making quite the stir in parts of Canada recently, and it is not positive. “When your neighbours may be hazardous to your health” was the title of yet another article that made the case that a Reformed community in BC’s Fraser Valley is contributing to a measles outbreak because of their refusal to vaccinate. Similar stories have appeared at times in Southern Alberta and Southern Ontario in the past decade – all areas where Reformed congregations are located. The latest rash of public outrage is taking on a new dimension: there are increasing calls for legal measures to be used against those who refuse to vaccinate. The Vancouver Sun has recently featured a surprisingly detailed article that compares the viewpoints of Reverend Adriaan Geuze, the minister of the Reformed Congregation of North America in Chilliwack, with that of Reverend Abel Pol, the minister of the Chilliwack Canadian Reformed Church. It does a good job revealing the theological basis for the competing viewpoints. The blog One Christian Dad has also posted a detailed article on the subject – written by a member of a Canadian Reformed Church in the Chilliwack area. Although there are differing perspectives on the issue, we should be able to agree that it is a parent’s responsibility to make decisions about what is best for their child and that authority can only be interfered with in exceptional circumstances. It is good for Christians to respectfully challenge each other’s moral conclusions, as iron sharpens iron. There are huge consequences – including for our neighbours. But this is fundamentally a discussion for parents, families, friends, and churches – not the legal system. Source: https://arpacanada.ca/news/2014/03/17/vaccinecontroversy-reformed-churches-speak-out/.

For accounts of past outbreaks involving these communities, see the following stories: Tom Blackwell, “Immunization No more: Inside the Mindset of Parents who Spurn Vaccination.” National Post, 4 April 2014, http://news. nationalpost.com/health/immunization-no-more-inside-the-mindset-ofparents-who-spurn-vaccination?__lsa=e8d5-2478. Tara Carmen, “Chilliwack Pastor Tells Congregation Vaccines Interfere with God’s Care.” Vancouver Sun, 15 March 2014, http://www.vancouversun.com/health/Chilliwack+pastor+tells+congregation+vaccines+ interfere+with+care/9620133/story.html.

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Although the author of the “One Christian Dad” article mentioned above ultimately supports vaccination, the discussion in the comments section of the site provides an interesting illustration of the variety of opinions related to vaccinations within the conservative Protestant ­community in Canada: https:// onechristiandad.wordpress.com/2014/03/14/what-i-believe-about-vaccines/.

4.  Jehovah’s Witnesses Although the Jehovah’s Witnesses once frowned upon vaccination due to their worries that animal blood or other biblically prohibited products might be present in vaccines, by the 1950s, the group had altered its approach and has since left the decision to individuals. See the Jehovah’s Witness Watchtower Online library: http://wol.jw.org/en/wol/h/r1/lp-e. http://wol.jw.org/en/wol/s/r1/lp-e?q=vaccine&p=par.

5.  La Mission de l’Esprit Saint This small group, mostly from Quebec, made headlines in 2015 when measles spread among the community. On the group’s website, one finds the following passage: Prevention of every disease by injecting vaccines or specific serums, repeated medical exams to the population, and building huge hospitals are costly and of little effectiveness in developing the nation’s health. Health must be a natural thing which one doesn’t have to monitor. (Translation by Maryse Guay) Source: http://www.mission-de-lesprit-saint.org/.

Although the group’s website provides an introduction to its origins and key beliefs, for more information on the incident that brought the group into the public arena, see “Mission L’Esprit-Saint Measles Outbreak Won’t Change AntiVaccine Stance: Former Member.” CBC News, 13 March 2015, http://www.cbc. ca/news/canada/montreal/mission-l-esprit-saint-measles-outbreak-won-tchange-anti-vaccine-stance-former-member-1.2994796. Cultural Examples In some cases, the passages and links provided in this section are derived from the chapters in this book. In other cases, the following data is unique to this appendix.

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As Dubé, Sauvageau, and Gagnon argue in chapter 7 of this volume, in some complementary or alternative medical contexts – chiropractic and midwifery, for example – vaccine hesitancy exists at the margins among practitioners and patients. Official Canadian professional associations publicly support vaccines.2 Other forms of complementary and alternative medicine and also some of the more broadly diffused cultural forms of hesitancy, however, are expressed in a number of ways.

1. Naturopathy In a 2012 position paper on the flu vaccine (posted on the Canadian Association of Naturopathic Doctors website), the authors note the following: Vaccinations prevent the body from naturally responding to external pathogens like viruses and bacteria. Individuals, who regularly maintain a strong healthy immune system will protect themselves from any adverse effects of the flu, will build permanent immunity and will decrease the potential for developing unknown side effects from long term exposure to vaccinations … The flu vaccination was developed by the allopathic health care system to decrease the risk of contracting the influenza virus. However, the best way of preventing any flu or complications from any flu is through prevention. The main focus of prevention needs to be on daily healthy habits that ensure an optimum immune system and overall health. A strong immune system is the most effective prevention strategy against the flu or any other virus.

Although the above statement was removed in 2015, readers may still be interested in the website of the Canadian Association of Naturopathic Doctors, where it was posted: https://www.cand.ca/.

2. Homeopathy The website of a homeopathic clinic in Vancouver presents the following claims about the merits of homeopathy: How Successful Is Homeoprophylaxis During Epidemic Outbreaks? Homeopathy has been used successfully for hundreds of years in many different countries during epidemic outbreaks. For example, for the last few years, homeoprophylaxis has been used successfully on millions of people in Cuba to prevent

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the tropical disease Leptospirosis. In Brazil, homeoprophylaxis was used successfully on thousands of people to prevent Meningitis. Source: http://www.littlemountainhomeopathy.com/vaccine-alternatives.

In Vitality Magazine, Anna Sienicka, a graduate of the Canadian College of Homeopathic Medicine, wrote, In my opinion, homeopathic immunization is a viable alternative to conventional vaccinations. Vaccines are usually made from disease material (virus or bacteria), also known as a nosode, and then prepared homeopathically (diluted hundreds or thousands of times) to render it completely safe and non-toxic. Only the energetic signature of the material remains after all these dilutions. No other additives or preservatives are used. Homeopathic immunizations are the size of the head of a pin and are administered by mouth. They dissolve easily in an infant’s mouth without danger of choking. Homeopathic vaccinations are safe and do not cause side effects. This is a painless approach to immunizing a child that does not involve needles. Thankfully, children no longer need to be left with traumatic memories related to this process. The outcomes of homeopathic immunization (homoeoprophylaxis) have been very successful. Results of a 15-year study done on 2,342 children by immunization expert Dr. Isaac Golden, Ph.D., showed the effectiveness of homeopathic vaccinations as 90%, suggesting homeopathic immunizations are as effective as regular vaccines, but without the hazards of regular vaccine toxicity. Source: Anna Sienicka, “Homeopathic Vaccines: An Alternative to Conventional Needles,” Vitality, http://vitalitymagazine.com/article/homeopathicvaccines-an-alternative-to-conventional-needles/#sthash.yidmrvzz.dpuf.

See also Canadian Society of Homeopaths: http://www.csoh.ca/ Ontario College of Homeopathic Medicine: http://www.ochm.ca/

3.  Vaccine Choice Canada – Formerly Vaccine Risk Awareness Network Vaccine Choice Canada reflects well many of the cultural and scientific concerns clinicians, advocates, and scholars have heard over many years. POLICY STATEMENT ON VACCINATION BY CATHERINE DIODATI Informed Consent Vaccine Choice Canada (formerly VRAN) recognizes that vaccines are not without risk and supports the right of each individual to adequate disclosure prior to

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providing consent. It is recognized that informed patients, and their parents or guardians, will make the best healthcare decisions. In order to provide truly informed consent, individuals must be apprised of potential risks, benefits and alternatives to vaccination. Pertinent information should include the actual risk of contracting a particular disease, based upon epidemiological evidence, probable outcome and available treatments. Disclosure should also include vaccine ingredients and their known hazards, possible adverse effects and vaccine efficacy. Information should be made available in a format that is appropriate to the patient, parent or guardian, including a variety of languages, in print, on tape and in braille. No vaccine should be administered if any hesitation is detected and until all questions have been answered. Information should be at least as complete as that found on vaccine package inserts. Information sheets should include documentation and information on the source(s). Original vaccine package inserts should be available upon request. Information should be provided well in advance of the vaccination appointment to allow time to understand the information presented and to address any questions. Vaccination consent should be based upon accurate and adequate disclosure and not upon fear. The probable outcome of natural infection should be explained including, available treatment for complications, the effect of proper nutrition and vitamins on outcome, and this information should be relevant to the patient’s health and environment. For example, any disease-related morbidity and mortality statistics used, must be relevant to Canadians. Voluntary Consent Vaccine Choice Canada (formerly VRAN) is opposed to mandatory vaccination, and upholds the right of individuals to exercise “Informed Consent” when considering an invasive medical procedure such as vaccination. While most Canadian provinces have adopted a voluntary policy regarding vaccination, and others provide exemptions to vaccination, most Canadians are not informed of their rights. The consent process should include information on the legal status of vaccination recommendations as well as the types of, and how to obtain, exemptions. Where mandatory vaccination legislation does not exist, individuals clearly should be informed that vaccination is voluntary. In regions where vaccination legislation does exist, thorough information regarding exemptions should be made available prior to obtaining consent. While medical exemptions do carry certain limitations, patients, and their parents or guardians, should be informed that religious and philosophical exemptions carry no such limitations. Exemption forms, where required, should be readily

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available. No pressure should be exerted to gain vaccination compliance. No individual should be refused medical treatment or threatened in any way should the individual choose not to vaccinate. Parents and educators should be informed that the only time an unvaccinated child can be removed from school is during an outbreak, and only for the duration of the outbreak, if the child is not already immune. No inference should ever be made that would tie educational rights to vaccination status. Consent forms used for school-based vaccination campaigns are frequently misleading in that they tend to emphasize statements such as “Childhood Immunizations: It’s the law,” “This student will be suspended from school if you do not complete and return this form,” while minimizing exemption information, if it is present at all. At no time should any coercion be exerted to influence a vaccination decision. Neither social service payments, medical treatment, employment, professional standing, nor the patient-care provider relationship, should be threatened based upon vaccination status. The decision to refuse vaccination must be respected and under no circumstances should any health care provider endeavour to gain consent from a child whose parent or guardian has refused consent to vaccination. The inherent ambiguity of the “mature minor” rule, coupled with certain provincial policies such as the BC Infant’s Act, has repeatedly been abused by pressuring school children to provide consent to vaccination against their parent’s explicit wishes. There is an underlying presumption that the child is capable of making specific health care decisions if he/she is able to comprehend the nature and consequences, including the benefits and risks, of the proposed treatment. While there may be certain benefits to such policies, they are abused when parental consent to vaccination is overridden because these children are provided with minimal and biased information that rarely represents actual risks associated with vaccination. Furthermore, the child may provide consent merely due to the overwhelming coercion of the school, a health care provider who is unfamiliar with the child’s history or solicited peer-pressure, effectively invalidating informed and voluntary consent requirements. Source: http://vaccinechoicecanada.com/.

See also http://vaccineriskawareness.com/.

4.  Vaccine Liberation On the “Canada Exemption” page, one finds official statements regarding the legal status of vaccination in Canada, along with information about how to seek exemptions from vaccines programs.

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Health Canada Statement on Immunization Unlike some countries, immunization is not mandatory in Canada; it cannot be made mandatory because of the Canadian Constitution. Only three provinces have legislation or regulations under their health-protection acts to require proof of immunization for school entrance. Ontario and New Brunswick require proof for diphtheria, tetanus, polio, measles, mumps, and rubella immunization. In Manitoba, only measles vaccination is covered. It must be emphasized that, in these three provinces, exceptions are permitted for medical or religious grounds and reasons of conscience; legislation and regulations must not be interpreted to imply compulsory immunization. Source: http://www.vaclib.org/exempt/canada.htm.

Compare to the U.S. site: http://www.vaccinetruth.com/. See also http:// www.vaccineriskawareness.com/Vaccines-A-Religious-Contention-. NOTES 1 All websites referenced in the appendix were accessed on 8 January 2017 and were live at that time. 2 For example, The Canadian Chiropractic Association’s official position on vaccination is the following: The Canadian Chiropractic Association recognizes that vaccination and immunization are established public health practices in the prevention of infectious diseases. Vaccination is not within the scope of chiropractic practice. The appropriate sources for patient consultation and education regarding vaccination and immunization are public health authorities and health professionals with a scope of practice that includes vaccination.   The Canadian Chiropractic Association (CCA) is the national, voluntary association representing Canada’s 8,500 licensed doctors of chiropractic. As MSK [musculoskeletal] experts, chiropractors provide the assessment, diagnosis, treatment and preventative care of biomechanical disorders originating from the muscular, skeletal and nervous systems. Approximately four and a half million Canadians use the services of a chiropractor each year. The CCA advocates on behalf of members and their patients to advance the quality and accessibility of chiropractic care in Canada, and to improve the effectiveness and efficiency of the healthcare system. For more information

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on the CCA or for a referral to a doctor of chiropractic, please visit www. chiropractic.ca. Source: http://www.chiropractic.ca/about-cca/code-ofethics/vaccination-immunization.

REFERENCE Grabenstein, J.D. 2013. “What the World’s Religions Teach, Applied to Vaccines and Immune Globulins.” Vaccine 31 (16): 2011–23. http://dx.doi.org/10.1016/ j.vaccine.2013.02.026.

Contributors

Julie A. Bettinger is an associate professor in the Department of Pediatrics at the Vaccine Evaluation Center at the University of British Columbia and BC Children’s Hospital, and a Michael Smith Foundation for Health Research Scholar. Her research interests include vaccine safety and vaccine preventable diseases, as well as attitudes and beliefs around immunization use. Her research focuses on the social, cultural, environmental, microbiological, and economic factors that can result in suboptimal immunization and poor protection against these diseases at a population level. Bettinger’s work is featured in publications such as the Pediatric Infectious Disease Journal, Journal of the American Medical Association, Vaccine, Clinical Infectious Diseases, the Canadian Journal of Infectious Diseases and Medical Microbiology, and the Canadian Medical Association Journal. François D. Boucher is a paediatric infectious disease specialist at the Centre Mère-Enfant Soleil du Centre hospitalier universitaire de Québec, and associate professor of paediatrics at Laval University Faculty of Medicine, in Quebec, QC. He has been active in the field of immunization in Quebec, and engaged with parents concerned about vaccines, for more than twenty-five years. Boucher received his medical degree from Dijon University, France, in 1981. He then trained in paediatrics in Quebec and Toronto, and in infectious diseases at Stanford University, California. Paul Bramadat is professor of religious studies and history, and director of the Centre for Studies in Religion and Society at the University of Victoria. He has published broadly on issues related to religious and ethnic diversity. He is the author of The Church on the World’s Turf: An Evangelical Christian Group at a Secular University (Oxford, 2000), and co-editor of International Migration

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and the Governance of Religious Diversity (with Mathias Koenig, MQUP, 2009), Religion and Ethnicity in Canada and Christianity and Ethnicity in Canada (with David Seljak, Pearson, 2005, and UTP, 2008, respectively), Spirituality in Hospice Palliative Care (with Harold Coward and Kelli Stajduhar, SUNY Press, 2013), and Religious Radicalization and Securitization in Canada and Beyond (with Lorne Dawson, UTP, 2014). Conrad G. Brunk is professor emeritus of philosophy and past director of the Centre for Studies in Religion and Society at the University of Victoria. His research has explored the ethical and religious aspects of environmental and health risk perception, and the communication of value issues in science-­related public policy. Brunk is a regular consultant to the Canadian government and international organizations on environmental and health risk management and biotechnology. He was co-chair of the Royal Society of Canada Expert Panel on the Future of Food Biotechnology (2000–1), and from 2002 to 2004 served on the Canadian Biotechnology Advisory Committee. He is co-author with Lawrence Haworth and Brenda Lee of Value Assumptions in Risk Assessment (WLUP, 1991), and co-editor of The Ethics of Cultural Appropriation (with James O. Young, Blackwell, 2009), Acceptable Genes? Religious Traditions and Genetically Modified Foods (with Harold Coward, SUNY, 2009), and Designer Animals: Mapping the Issues in Animal Biotechnology (with Sarah Hartley, UTP, 2012). Eve Dubé studied at Laval University in Quebec City and obtained a PhD in medical anthropology. Her thesis was related to ethical issues in the public health field. Since 2008, Dubé has been a member of the Scientific Group on Immunization at the Quebec National Institute of Public Health. She is also a researcher at the Research Center of the CHU-Quebec, and an adjunct professor at the Social and Preventive Medicine Department of Laval University. Dubé’s research focuses on the sociocultural field surrounding immunization. She is the principal investigator of various research projects that focus on knowledge, practices, attitudes, and beliefs about immunization among health professionals and the public. In addition, she is interested in immunization promotion and is leading various projects in that field. Dominique Gagnon is a research professional at the Quebec National Institute of Public Health. She completed a Master of Science degree in community health at Laval University in 2010. Her main interests include the understanding of health determinants and the design, implementation, and evaluation of

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health promotion interventions. Gagnon currently works with Eve Dubé on several projects related to immunization promotion. Maryse Guay is a public health and preventive medicine specialist and full professor in the Faculty of Medicine and Health Sciences at the University of Sherbrooke. She is a medical adviser for both the research evaluation sector of the Public Health Department in the Centre intégré de santé et de services sociaux de la Montérégie-Centre, and for the Quebec National Institute of Public Health, and serves as a member and secretary of the Quebec Immunization Committee. She is currently director of the Charles-Le Moyne Hospital Research Centre, where she teaches and researches program evaluation, in particular regarding immunization programs and immunization service delivery. In 2011 she was a visiting research fellow at the Centre for Studies in Religion and Society, where she explored religious and cultural reasons for vaccine h ­ esitancy. Caroline Laberge is a public health and preventive medicine resident at the University of Sherbrooke. She completed her medical degree at the University of Sherbrooke and holds a master’s degree in innovation management from the École de technologie supérieure de Montréal. Laberge worked on a research project on vaccine hesitancy, directed by Maryse Guay and Eve Dubé, to explore how parents’ knowledge, attitudes, and beliefs on vaccination in general characterize hesitancy. Other interests include health care planning and organizational innovation in public health. Barbara Law is a paediatrician with twenty years of academic experience as section head of paediatric infectious diseases at the Winnipeg Health Sciences Centre, and professor of paediatrics and child health as well as medical microbiology at the University of Manitoba. Law was chief of vaccine safety at the Public Health Agency of Canada from 2004 until her retirement in June 2015. She has been an active participant in several global vaccine safety initiatives, including membership on the WHO Global Advisory Committee on Vaccine Safety (2005–11) and the WHO-CIOMS Working Group on Vaccine Pharmacovigilance (2005–12). In 2013, and again in 2016, Law was elected to the Science Board of the Brighton Collaboration to facilitate and promote common terminology and shared understanding of adverse events following immunization so that safety research and surveillance can better inform public health policy and decisions. Noni MacDonald is a professor of paediatrics at Dalhousie University with an appointment in paediatric infectious diseases at the IWK Health Centre

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in Halifax. She is a member of the Canadian Centre for Vaccinology, Halifax, and a former head of the Health Policy and Translation Group. She is the former dean of medicine at Dalhousie University. Prior to coming to Dalhousie in 1999, MacDonald worked for eighteen years at the University of Ottawa, the Children’s Hospital of Eastern Ontario (CHEO), and the Ottawa General as a professor, teacher, clinician, and researcher in paediatrics and infectious diseases. She has published over 350 papers, served on the editorial boards of several major publications, and was the founding editor in chief for Pediatrics and Child Health and editor for twenty years. She is an elected fellow of Canadian Academy of Health Sciences. She was appointed to the Strategic Advisory Group of Experts on immunization at the Wold Health Organization in 2017. She is active in many academic and professional organizations as well as federal government committees and taskforces. Shannon E. MacDonald is an assistant professor of nursing at the University of Alberta and an adjunct assistant professor in the School of Public Health at the University of Alberta and in the Department of Pediatrics at the University of Calgary. As a paediatric nurse and epidemiologist who has cared for children with vaccine-preventable diseases in North America and overseas, she has a passion for ensuring children have access to life-saving immunizations. Her program of research focuses on supporting immunization best practices and policies, and promoting informed decision-making by parents. She is particularly interested in system-level influences on vaccine uptake and is an advocate for making immunization the best choice and an easy choice for parents. Heather MacDougall is an associate professor at the University of Waterloo, specializing in Canadian history of medicine, health care, and health policy. Her recent digital publications include Making Medicare Healthcare in Canada 1914–2007, and with G. Ross Langley, MD, Medical Ethics Past, Present and Future. MacDougall is currently researching the history of anti-vaccination discourse and rhetoric and its impact on contemporary public policy. C. Meghan McMurtry completed her PhD in clinical psychology at Dalhousie University in Halifax, Nova Scotia, and her psychology residency at Brown University in Providence, Rhode Island, in 2010. She is an assistant professor in the clinical psychology program at the University of Guelph where she directs the Pediatric Pain, Health, and Communication Lab. She is a clinical and health psychologist with the Pediatric Chronic Pain Program at McMaster Children’s Hospital. McMurtry is an associate scientist at the Children’s Health Research

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Institute and an adjunct research professor in paediatrics at the University of Western Ontario. McMurtry’s research and clinical interests in child health psychology focus on acute and chronic pain, medical procedure-related fear as well as communication and family influences in these contexts. Her research has been funded by the Canadian Institutes of Health Research, Canadian Foundation for Innovation, Team for Research with Adolescents and Children in Palliation and Grief, and the Nova Scotia Health Research Foundation. Lisa M. Mitchell is associate professor of anthropology at the University of Victoria. Her research interests are at the intersection of bodies, technology, and inequalities. Mitchell has conducted research on prenatal testing, perinatal loss and reproductive politics in Canada, on the visualizing technologies of medicine, especially ultrasound fetal imaging, on experiences and meanings of body and risk among impoverished children and their families in the Philippines and among street youth in Canada, and on bereaved parents’ use of social media. In addition to publications in peer-reviewed journals, Mitchell is the author of Baby’s First Picture: Ultrasound and the Politics of Fetal Subjects (UTP, 2001). Laurence Monnais is professor of history at Université de Montréal and a Fellow of the Royal Society of Canada. She is a social historian specializing in the history of medicine and health in Southeast Asia, and the history of complementary and alternative medicines worldwide. Monnais currently holds the Canada Research Chair in Health Care Pluralism. Her most recent publications include Médicaments coloniaux: Circulation, distribution, consommation de produits pharmaceutiques au Viêtnam, 1905–40 (Paris: Les Indes Savantes, 2014) and Médecine(s) et santé: Une petite histoire globale, 19e–20e siècles (PUM, 2016). Monika Naus is a public health physician with a focus in communicable disease control. During her final year of residency training in public health at the University of Toronto, she was a federal field epidemiologist with the Laboratory Centre for Disease Control, Health Canada, and investigated over a dozen outbreaks in Ontario. She has been with the BC Centre for Disease Control since July 2001, and is currently medical director of the Immunization Programs and Vaccine Preventable Diseases Service. She is associate professor at the School of Population and Public Health at the University of British Columbia. Naus is involved in a variety of provincial and national activities to improve immunization programs in Canada. She was a member of the National Advisory Committee on Immunization for eight years, and then its chair for four years until 2007. Before taking up her position in BC, Naus worked at the provincial level

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Contributors

in Ontario with the Disease Control Service of the Public Health Branch from 1990, first as Senior Medical Consultant in Vaccine Preventable Diseases and Tuberculosis Control, and from 1997 through 2001, as the Physician Manager of the Disease Control Service. Kieran C. O’Doherty is an associate professor in applied social psychology at the University of Guelph, and director of the Discourse, Science, Publics Research Group. He is also editor of the journal Theory & Psychology. O’Doherty’s expertise lies primarily in the investigation of the social and ethical implications of new science and technology. Particular areas of focus have included genetic testing, tissue biobanking, the human microbiome project, salmon genomics, and soil microbial genomics. Contributions to the academic literature and practice include analyses of the meaning of genetic risk in genetic counselling sessions, and the development of theory and methodology to involve lay publics in the governance of biobanks. O’Doherty has also published widely on the use of qualitative methods and the use of public deliberation in science and technology. His current research involves an ongoing focus on the use of deliberative methods, health psychology, and investigation of the broader social and psychological implications of emerging technologies. André Picard is the health columnist for the Globe and Mail and the author of the bestselling books The Path to Health Care Reform: Policy and Politics (Conference Board of Canada, 2013), The Gift of Death: Confronting Canada’s Tainted Blood Tragedy (HarperCollins, 1998), and Critical Care: Canadian Nurses Speak for Change (HarperCollins, 2000). Picard is an eight-time nominee for the National Newspaper Awards, Canada’s top journalism prize, and past winner of the prestigious Michener Award for Meritorious Public Service Journalism. He was named Canada’s first “Public Health Hero” by the Canadian Public Health Association and as a “Champion of Mental Health” by the Canadian Alliance on Mental Illness and Mental Health. His work has been recognized by a number of other consumer groups, including the Alzheimer Society of Canada, the Canadian Hearing Society, Safe Kids Canada, and the Campaign to Control Cancer. Aline Rinfret holds a PhD in immunology from the University of Toronto. Following an additional four years of postdoctoral work, she held a research scientist position at the Canadian Red Cross and Canadian Blood Services for eight years. In 2001, Rinfret joined the Canadian Network for Vaccines and Immunotherapeutics, a Network of Centres of Excellence, where she worked as associate scientific director, coordinating various network research, ­communications,

Contributors

  383

and training activities. In 2005, Rinfret joined Health Canada’s Biologics and Genetic Therapies Directorate (BGTD) and has led the Viral Vaccines Division there since 2006. In this role, she manages a team of some twenty scientists and laboratory technicians who oversee the quality of viral vaccines in Canada. Rinfret also serves as a non-voting BGTD representative on both the Canadian Immunization Committee and the Vaccine Supply Working Group, where she provides technical advice on vaccine regulatory and quality issues. Jennafer Roberts graduated in 2012 with an MA in anthropology from the University of Victoria. Her thesis explored how young women make decisions about HPV vaccination, and if and how they incorporate medical and public health information into those decisions. Roberts’s thesis was guided by her interests in reproductive and sexual health, individuals’ understandings and experiences of risk, responsibility, and identity, as well as theories of neoliberalism and governmentality. From 2011 to 2016, Roberts worked for a non-profit organization that supports family physician-led initiatives to improve health care for patients. Currently, she is working in Camosun College’s School of Health and Human Services. Réal Roy is an assistant professor in the Department of Biology and a member of the Centre for Forest Biology at the University of Victoria where he teaches upper-level and graduate courses in molecular biology, microbial ecology, and molecular epidemiology. As a microbiologist, he has published scientific articles on microbial ecology and environmental microbiology in journals such as Applied and Environmental Microbiology, Microbial Ecology, FEMS Microbiology Ecology, Canadian Journal of Microbiology. He has also published book chapters in Mythe et philosophie à l'aube de la Chine impériale. Études sur le Huainan zi (PUM, 1992), Greenhouse Gases Emissions from Natural Environments and Hydroelectric Reservoirs: Fluxes and Processes (Springer-Verlag, 2005), Résilience, résistance, inclusion et alliances: Penser la francophonie canadienne différemment (PUL, 2017). Roy spent a sabbatical leave (2008–9) at the Centre for Studies in Religion and Society at the University of Victoria, where he focused on the history of vaccination refusal. Chantal Sauvageau completed her doctorate in medicine in 1999 and a master’s degree in community health in 2002, both from Laval University. She obtained a certificate in community health from the College of Physicians and Surgeons of Canada in 2004. Sauvageau started her career as a consultant at the Regional Public Health Direction of the Capitale-Nationale, where she still practices. She joined the research team in vaccination during the year 2006, and

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Contributors

the Quebec Public Health National Institute in 2009. She is an associate professor at the Department of Social and Preventive Medicine at Laval University. Sauvageau has been a member of the Quebec Immunization Committee since 2008. Her main research interests relate to HPV vaccines, the organization of immunization services, and the problem of vaccine delays. Christine Smith is a master’s student currently completing her degree in health geography at Western University in London, Ontario. She holds a degree in psychology from the University of Guelph where she completed an undergraduate thesis examining the promotion of the HPV vaccine on Canadian webpages. Her prior research addressed the ethical dilemmas of vaccine hesitancy. Christine’s current research focuses on children’s health and well-being, social determinants of health, and program evaluation.

Index

Aboriginal, 178nb, 252n2, 280, 282. See also Indigenous; First Nations acupuncture, 27–8, 198–201, 204, 344 agency: and harm, 97–9, 101; and vaccine hesitancy, 97–9 allergies, 59, 62, 75n2, 278–9, 282 allopathic medicine, 82, 195, 197, 209, 371. See also biomedicine alternative: health, 9–10, 36–7, 64, 68, 195–218; health care providers, 16, 152, 168, 183; medicine, 27, 67, 326, 360; therapies, 35, 82, 85 anecdotal: experience/evidence and attitudes towards vaccines, 32, 36, 82, 98–9, 130, 140, 252, 327, 345–6 animal: blood or tissue and the creation of vaccines, 23, 118, 121, 156n9, 370; models, 120, 126n18, 269 antibiotics, 122, 125n14, 126n20 antisepsis, 136, 155n4 antitoxin, 145–7, 151, 157n20, 157n21, 262 anti-vaccination: activists, 327, 346; campaigns, 139–44; Canadian history of, 129–54; conflict between pro-vaccination and, 130–3; doctors, 131; groups, 322, 326, 331;

information, 326–7; as minority stance, 344; movement, 13, 69–70, 293, 342; sentiments, 181; subculture, 91, 98 Anti-Vaccination League (AVL), 135–7, 139–40, 142–4, 151, 156n14 anti-vaccine: activists, 13; campaigns in Canada, 139–41; Christian Scientists as, 26; discourse, 9, 17, 36, 322; and media, 327, 349; overlap between alternative lifestyles and, 27; subculture, 35–6 arm-to-arm vaccination, 131–2 atheism: Canadian growth of, 20–2; new, 47n27, and religious nones, 21 autism, 36–7, 41, 66–7, 76n5, 80, 85, 91–2, 96–7, 99, 172, 241, 265, 324–5, 327, 344–5, 349 authority: acceptance of, 184; challenges to, 41; God’s, 23; medical, 42, 303, 305; resistance to, 71, 73, 144, 153, 185, 303 autonomy: and control, 96–7, 314; of health care professionals, 6; individual, 58, 82, 96, 136, 142, 153, 314–15; parental, 60, 82, 143; personal, 6, 33, 299, 360; provincial and territorial, 359; versus group responsibility, 10, 73, 75 Ayurveda, 27, 198, 199

386

Index

bacteria: and environment, 119; inactivated, 120–1; as natural, 208, 344, 371; pertussis, 245; in vaccines, 125n14, 262, 273, 372; versus virus, 126n22 bacteriology, 130, 136, 144–5, 229 biomedicine: conventional, 17, 38, 197, 360; development of, 195–6; funding of, 219n2; hegemony of, 196; and relationship to CAM, 197, 199–200, 206, 212, 217–18 bioterrorism, 123 bloodletting, 115, 116, 136 breastfeeding: as natural defense against infection, 28, 172, 212 British Columbia (BC): midwifery in, 205–6; outbreaks in, 23, 244, 248–9, 360; vaccine delivery in, 233 Buddhism: in Canada, 20–1, 359; and Chinese religion, 43n5 Canada: complementary and alternative health in, 200–1; history of vaccination and anti-vaccination in, 129–54; immunization in, 232–5; naturopathy in, 201–2; religion in, 17–22, 187, 359–60; vaccine hesitancy in, 14, 165–87, 187n2, 251–2; vaccine safety in, 261–84 Canadian: anti-vaccination societies, 130; context, 11; vaccination schedule, 64, 126n21, 216, 359; vaccine hesitant groups, 165–87 Canadian National Advisory Committee on Immunizations (NACI), 64, 232, 265nb, 280–1 Canadian Constitution, 46n19, 375 Canadian Paediatric Society, 334–5 Catholic: communities in Canada, 18–19, 21; opposition to vaccination,

24, 135, 366; support for vaccination, 25, 132 Catholicism: and medical advancements, 367; and moral conflict regarding vaccination, 24–5, 26, 59, 367–8; and vaccine hesitancy, 24–5, 59, 367 chemophobia, 344, 357 chickenpox, 90, 129, 156n12, 166, 172, 173, 235, 280. See also varicella childhood: disease, 90, 145, 151, 342, 343, 345; mortality, 247, 275; vaccines/vaccination, 42, 64, 70–1, 91, 142, 215, 234–5, 252, 294, 298, 332, 335, 344, 348, 374 China: development of vaccines in, 10, 112–13; smallpox inoculation in, 113–14, 123, 125n10, 266 Chinese: medicine, 27, 198, 199, 201 Chinese religion: in Canada, 21, 43n5 chiropractic: as alternative or complementary medicine, 28, 144, 172, 199, 200, 344, 371; Canadian regulation of, 204; cost, 206; definition of, 204; and health insurance, 206, 217; integration with biomedicine, 217; professionalization, 151; training, 204; and vaccination, 67, 208, 212–15, 375–6n2 Christian: clerical support for vaccination, 149; schooling and vaccine hesitancy, 45–6n19, 112 Christian Reformed tradition, 23–4, 366, 368–9 Christian Science, 26, 59, 70, 366, 368 Christianity: in Canada, 18–22, 359–60; evangelical and fundamentalist, 360; and immigration, 22, 359; and vaccine hesitancy, 23–5

Index class: inequality, 137, 140, 195; and vaccination programs, 69; and vaccine hesitancy, 33, 129, 135, 140; and vaccine uptake, 11, 71 cognitive: decision-making, 61–3; deficit model of vaccine hesitancy, 357; dissonance, 37; diversity, 358; heuristics, 64, 349 communication: challenge of, 96, 102–4; failures of, 322; impact of good, 321–36, 346, 357–8; indirect, 214; lack of, 141; risk, 56, 61–3, 67, 68, 72, 74, 75, 102–4; with vaccine hesitant parents, 331–6 community: culture and, 111; health, 56, 57, 59, 141, 153, 329, 346, 349 complementary and alternative medicine (CAM), 6, 10, 27–8, 67, 172, 183, 195–218, 344, 371 compulsion: and liberty, 142; versus persuasion, 138, 153; versus voluntariness, 95 compulsory: adult vaccination, 144; childhood/infant vaccination, 60, 69, 131, 132, 137; vaccination and school entry, 139, 141, 234–5; vaccination and employment, 58, 135, 136, 141, 235; vaccines and vaccine hesitancy, 94–6, 118–19, 133,152 conscientious objector, 70, 138, 140, 235 consensus: expert-dependent, 29; lack of government, 233; lack of value, 103; medical, 283, 358; scientific, 14, 17, 34, 39, 84, 99, 102, 123, 327, 356–7; vaccine-positive, 28, 35, 327 consent: informed, 46n19, 279, 281, 372–3; parental, 56, 64–6, 98, 132; voluntary, 99, 373 conspiracy, 6, 32, 124, 344, 361

  387

cosmology, 9, 59, 74, 119, 186, 315 cowpox, 112, 117–18; 121, 124n3 cultural: anxieties, 297, 299, 357; connotations, 299; differences, 144; shifts and vaccination, 28–34, 144; tensions, 134–5; values, 86 culture: Canadian, 23–8; and community, 111; counter-, 196; and decision-making, 130, 133; definition of, 8–9; sub-, 9–10, 13, 14, 27, 32, 34–40, 91, 98, 100, 185, 197, 326, 355, 366; English versus French, 134–5, 152; North American, 42, 93; popular, 30, 241; Québécois, 18; and religion, 8–9, 23, 34; and risk perception, 295; shared, 186; and subjectivity, 17 Cutter incident, the, 45n14, 262, 266–8, 274, 276–7 decision-making: cognitive models of, 61–3, 74, 357; collective, 154; and identity, 297–8, 314; individual, 64, 154, 315; informed, 205, 294–5, 298, 309, 316–17; multivalent, 366; process, 16, 81, 83, 329, 349; provincial and territorial, 232, 233; qualitative, 89; rational, 64, 75, 82, 153; and responsibility, 297; science based, 88, 103; stress from, 16; vaccine, 294, 297; and vaccine hesitancy/refusal, 60–1 diphtheria, 35, 91, 124n4, 130, 143, 144–51; 153–4, 157n20, 157n21, 158n25, 229, 234, 246, 262, 325, 375 diphtheria, pertussis, and tetanus vaccine (DPT), 151, 246 diphtheria, tetanus, acellar pertussis, polio, haemophilus influenzae type b (DTaP–IPV–Hib), 238

388

Index

disease: animal, 118, 120; artificial versus natural, 113–15, 266, 324, 326, 370; dimensions of, 196; dreaded, 91–2; eradication, 7, 29, 111, 126n20, 230–2, 249, 251, 275, 293, 327; exposure as means of immunity development, 89–90, 114, 266, 324–5; germ theory of, 136, 152; healthy lifestyle as protective against, 172, 208–10, 301, 371; infectious, 5, 14n1, 32, 72, 111, 120, 133, 213, 225, 229–30, 240, 248, 275, 343, 346–7; natural, 97–8, 172, 324, 344; sanitation and control of, 131–3, 136–7, 139, 140, 155n6; transmission through inoculation/ vaccination, 115, 131, 140, 325; vaccine-preventable, 14, 80, 151, 182, 213, 218, 230–2, 234, 240–51, 266, 279, 294, 323 325, 343; versus illness and sickness, 196 Dutch Reformed Church, 23–4, 69, 112, 116, 185, 250–1 education: health, 144, 146–9; layered, 334; and impact on vaccination opinions, 33, 85–6, 149, 153, 157–8n23, 167, 170, 171, 173–4, 175, 177, 181–2, 186, 209–10, 314, 332, 342; parental, 167, 170, 171, 332, 334, 335; women as target for public health, 146–7, 149–50 emotion: and vaccine hesitancy, 13, 32, 64, 140, 156n11, 328–9 emotional: arguments for vaccination, 328–9; factors in vaccine uptake, 63–7, 140, 156n11, 322, 336 empirical: evidence, 16, 28, 35, 37, 58–9, 357; extra-, 72; fact, 104; observation, 87; science, 88, 105n2; validation, 38, 46n21, 68

epidemic: compulsory vaccines in times of, 75n1, 153; disease, 229; homeopathy in, 211–12, 371–2; human-made, 267; influenza, 142; manufactured, 123, 142; measles, 242–4; and panic, 136; pertussis, 263, polio, 249, 266–7; and religion, 185; smallpox, 117, 123, 130, 134–7, 141–4; vaccine-preventable, 5, 185 epidemiological: evidence, 373; lens on risk, 315; studies, 62, 327 epidemiology: of disease, 46, 115, 240–51; and science, 120, 355; and public health, 120, 225, 229; and risk, 315 ethical: arguments for vaccine hesitancy, 23–4, 56, 83, 101, 367; implications of vaccine hesitancy/refusal, 60–1, 64–8, 74–5, 97, 367–8; principle of “do no harm,” 98 ethics: and risk, 101–2; and vaccine hesitancy, 56–76 ethnic: minorities and vaccine hesitancy, 69–71 ethnicity: and vaccine hesitancy/uptake, 69, 169, 177, 183–4, 270 Europe: measles in, 243–4, 263; religion in, 23, 187; vaccination in, 10, 112–19, 123, 157n20, 282–3 evidence-based: arguments for vaccination, 328–30; medicine, 87–8, 103; reasoning, 40–1, 308; research and its impact on vaccine choice, 317, 322, 357 fear: of needles, 59, 65–8, 173; and new vaccines, 90; and vaccine hesitancy, 65–6, 68, 321–2, 343 fertility, 9, 25, 44n9 First Nations, 65, 71, 199, 233, 237, 238, 264. See also Aboriginal; Indigenous

Index formaldehyde, 13, 33, 121, 267 Fraser Valley (BC), 23, 369 gender: -specific vaccines, 296–7, 310; imbalance and health responsibility, 308, 316; and risk, 295; and vaccine education, 146–7, 149–50; and vaccine hesitancy, 182–3, 186; and vaccine uptake, 11, 175–8, 182–3 genetically modified (GM), 84, 85, 104n1 genetic: data, 119–20; disease, 264; factors in treatment, 202; relatedness, 117 government: Big, 11, 69, 72, 82, 100, 283, 326, 344; and coercion, 69, 73, 357; relationship to Big Pharma and Big Science, 11, 356; support of vaccines, 302, 356, 358; trust in, 82, 96, 100, 326, 344, 357; ulterior motives to vaccination, 13, 321 group: identity and vaccination stances, 68–72, 75, 131, 183 Guillain–Barré Syndrome (GBS), 29, 45n16, 278–9 H1N1, 9, 282, 305, 329, 330 harm: agency and, 60, 93, 94–5, 97–9; calculation of, 87; future, 308; and inoculation, 116; moral, 60, 81, 116; prevention, 58; principle, 92–3, 94–5; protection from, 310, 314, 316; reduction, 343; and risk, 101; vaccination, 81, 185, 305, 310, 324, 327 healing: body as capable of self-, 172; faith, 199; by God, 23; modalities, 196, 198; prayer, 26 health: alternative, 9–10, 16, 36–7, 64, 68, 195–218; boards, 133, 135–7, 148,

  389

151; care providers and reporting of vaccination, 277; complementary, 9–10, 16, 36–7, 64, 68, 195–218; equity, 70–1; global, 26, 44–5n12, 277, 283–4; optimization, 61–3; paradigms of, 186, 195, 198–9, 295, 328; practitioners and patient relations, 303–7, 312–13, 323–4; psychology perspective on vaccine hesitancy, 56–7, 64–8; regulation in Canada, 219n2; social determinants of, 11, 131; societal, 56, 58, 182, 346, 355; weeks, 146, 149–50 hepatitis, 239, 298 herd immunity, 5, 14n1, 57, 59, 75, 237–8, 250–1, 252–3n5, 298, 316, 325, 343 heuristic: availability, 349; cognitive, 64; definition, 349; devices, 40, 89; faulty, 29 Hinduism: in Canada, 20–2, 359; and HPV vaccine, 184 HIV, 25, 44n9, 173–4, 282, 326 homeopaths: beliefs in natural remedies, 37; differences between mainstream medicine and, 144, 196; recognition of, 151; reluctance to support vaccination, 200; training of, 203, 206, 208, 217 homeopathy: as alternative medicine, 85, 196, 198, 344; cost, 206; defense of, 28, 39, 47n25; definition of, 37, 202–3; marginal position of, 206; and naturopathy, 200, 202; products in Canada, 203; rejection of medical science in favour of, 85, 372; two principles of, 202–3; and vaccination, 37, 67, 210–12, 218, 344, 371–2 human papillomavirus (HPV): accessibility, 302; and “at risk”

390

Index

populations, 299, 302–3, 304–5, 307; in Canada,170, 173, 296; Cervarix vaccine for, 296; class, 180; cost of vaccine, 296, 302, 316; Gardasil vaccine for, 296, 306; newness of vaccine for, 123, 305–6, 308, 309, 312; religious discourse around, 184, 295, 297; and reproductive health, 309–10; and sex/sexuality, 101, 187n5, 296–7, 299, 307, 360; and vaccination coverage, 239; vaccine, 11, 35, 169–71, 173–4, 179, 182–3, 186, 293–317, 342 Hutterites, 70, 185 identity: group, 68–72, 75; intersectional, 75; performance through vaccination decisions, 297–8, 314 immigration: policy, 27; and religion, 18, 21, 22, 359; and vaccination, 44n12, 183–4; and vaccine hesitancy, 27, 138–9, 359 immunity: development and vaccine hesitancy, 89–90; herd, 5, 14n1, 57, 59, 75, 237–8, 250–1, 252–3n5, 298, 316, 325, 343; lasting/lifelong, 115, 120–1, 132, 135, 325; as protection against disease, 117, 125n13; theory of, 121 immunization: adult, 35, 144, 233–4, 236, 238–40; adverse event following, 66, 235, 261, 264, 270–4, 277–9, 285n5, 285n6, 359; advocates, 7, 347; benefits, 154; in Canada, 232–5, 358; and community health, 349; coverage surveys, 237–40; and disease prevention, 144; efficacy, 139; free, 146, 148; homeopathic, 211–12; measurement, 235–7; paediatric, 64; and politics, 233;

programs, 6, 138, 229–30; public education about, 147–8; registries, 236–7, 359, 362n2; resources on, 335; routine, 154; standardization of, 359; under-, 237; and vaccination, 157n21; weeks, 149–50, 154. See also vaccination immunology, 120, 152, 154, immunosenescence, 234 incomplete: vaccination, 166–72, 175–8; vaccination and geography, 181; vaccination and poverty, 179–80; vaccination and religion, 184–6 Indigenous: forms of spiritualty in Canada, 21 individualism: and decision-making, 314–15; and libertarian culture, 93–4; and vaccination, 69 inequality: and vaccine hesitancy/ uptake, 71, 73 influenza, 29, 35, 126n20, 142, 174, 178, 182, 184, 231, 239, 279, 280–3, 330 inoculation: disease recurrence, 115; and God’s plan/will, 116; moral objections to, 116; opposition to, 131, 147; physical objections to, 115; smallpox, 111–23, 124n3, 342; versus vaccination, 117–18 Internet: anti-vaccination on the, 98, 129, 181, 326–7, 349; as health/ medical resource, 31, 33, 40, 181, 309, 345, 356, 361; as obstacle to health care, 32, 85; rise of the, 30; and social control, 30; and vaccine hesitancy, 129, 326, 349, 361 interpretation: differences, 81–3 intussusception, 270, 272, 278 Islam: in Canada, 20–2, 359; and the “West,” 44n9; and vaccine hesitancy, 25, 184, 366

Index Jenner, Edward, 112, 116–18, 121, 124n3, 124n5, 126n18, 131, 139 Jehovah’s Witnesses, 102, 370 Jewish: communities and low vaccine uptake, 70; communities and mistrust of health care professionals, 70, 71–2 Judaism: in Canada, 20, 22; and vaccine hesitancy, 366 Jurin, James, 113–14, 115, 125n6, 229 language: barriers and vaccination, 27, 175, 180, 183–4, 237; and identity, 18–19; use of medical or scientific, 36, 133, 308, 315 long-term: consequences of negative experiences, 65–6; effects of vaccination, 173, 209, 305, 309, 313, 317; health, 63, 154, 173; relationships, 11, 358; safety, 306; testing, 308, 312, 314 lymph, 131, 132, 135, 138, 142, 143, 152 mandatory: immunization in Canada, 46, 234–5, 373, 375; vaccination exemptions, 72, 111; vaccination during outbreaks, 141; vaccination and school entry, 111, 143, 240, 374, 375; vaccination and work, 58, 235 measles: decrease in, 111, 241–2, 245; epidemiology of, 240–5; outbreaks, 23, 60, 185–6, 229, 238, 244–5, 251, 369, 370; perceptions of, 90, 184; resurgence of, 230, 243–5, 330, 343; vaccine, 9, 35, 96, 123, 182, 297, 346, 375 measles, mumps, rubella (MMR) vaccine, 36, 46n19, 64, 66–7, 76n5, 80, 85, 125n14, 237–8, 241, 263, 265, 279, 327, 344

  391

media: exposure to, 184; representation of vaccination, 67, 85, 149–50, 154, 305, 326–7; role in vaccine debates, 344–5, 349; stars and opposition to immunization, 36, 129, 326 medical: professionals and authority over patients, 303, 323; professionals and vaccine hesitancy, 6, 130–1, 348; systems, 195 medical health officer (MHO or MOH), 133, 138, 139, 142, 147, 154 medicine: complementary and alternative (CAM), 6, 10, 27–8, 67, 172, 183, 195–218, 344, 371; development of conventional Western, 185–6; trust in, 5, 45n15, 85, 100, 328, 356 meningitis, 9, 211, 231, 238, 248, 263, 278–80, 330, 372 microbiology: and emergence of biomedicine, 185–6, 196; knowledge of, 112, 212; and reduction of risk, 121–2; and vaccine development, 119–23 midwifery: definition, 205; Canadian regulation of, 205–6; government funding of, 200, 206; relationship to biomedicine, 200; training, 205–6; and vaccination, 172, 200, 207, 215–17 minorities: ethnic and racial, 69, 70–1; and vaccine uptake, 71 Mission de L’Esprit Saint, 185–6, 370 Montreal (QC): anti-vaccination society in, 130; pro-vaccination in, 132; public health in, 134–7, 148, 150; smallpox in, 134–7, 142 mortality: childhood, 323; and diphtheria, 143, 145, 147, 149–50, 154; from immunization, 45–6n19, 116, 131, 134, 143, 151, 152, 262–4, 266,

392

Index

267; infant, 225, 229, 245, 247; and measles, 240, 242–4; and pertussis, 245–8, 263; and polio, 249; and rotavirus, 275; and smallpox, 113, 116, 134–5, 140; statistics, 155n2 mumps, 92, 111, 185, 263, 279, 280, 297, 343 Muslim: arguments for vaccine hesitancy, 25, 44n9 National Immunization Strategy (NIS), 232, 252n2, 283 natural: exposure to disease as means of immunity development, 89–90, 172, 325; health, 208, 370–1; methods of disease prevention/treatment, 28, 37, 202–4, 210–11, 371; paradigm, 186, 266; selection and vaccine development, 118–20, 126n23; versus scientific medicine, 196, 201–2, 217; versus “unnatural” disease, 89–90, 97–8, 114–15, 192, 324–5; versus “unnatural” products, 172, 198, 202–3, 211, 326, 344 naturalistic fallacy, 344 naturopathy: as alternative medicine, 198, 344; in Canada, 202; cost 206; definition of, 201–2; growth of popularity of, 196; and homeopathy, 200; marginal position of, 206; rejection of medical science in favour of, 85, 172; and vaccination, 28, 67, 207, 208–10, 371 necessity: perceptions of vaccine, 35, 59, 71, 76n6, 101, 154, 251 New Age: and naturopathy, 201; as religious nones, 21 nones, religious: in Canada, 20–2, 43n4; and vaccine hesitancy, 27–8, 360 nosodes, 210–11, 344

Ontario: Provincial Board of Health, 133, 138; public health in, 133; smallpox in, 133, 137–9, 142–4; Vaccination Act, 140–1 Ontario Public School Health Book, 147 oral polio vaccine, 249, 250, 264, 268 osteopaths, 151 outbreak: cowpox, 177; homeopathy in times of, 211–12, 371–2; infectious disease, 5, 111, 123, 232, 235, 347, 360; influenza, 184; mandatory vaccination during, 141–2, 235; measles, 23, 60, 238, 244–5, 369; as opportunity to promote vaccination, 149, 347; pertussis, 23, 247–8, 321; polio, 249–52, 266–7; religiously linked, 23, 45–6n19, 116, 185–6, 360; rubella, 23, 45–6n19, 112, 116, 238; smallpox, 130–8, 141, 143; tetanus, 262; vaccine-preventable, 237, 355 pain: reduction and vaccination, 333–4, 345; as side effect of vaccination, 248, 278, 333; and vaccine hesitancy, 64–8, 76n4, 333–4, 343; value judgments and, 87 parental: agency, 103; autonomy, 60, 82, 132, 143; beliefs/concerns about vaccines, 172, 325, 336–7n1; consent, 56, 64–6, 98, 132, 374; disenfranchisement, 180; education and vaccination, 167, 170, 171, 332, 334, 335; guilt over vaccination choice, 80, 321; influence on children’s vaccination, 173–4, 309; relationship to health providers, 321–36; responsibility, 298, 369; rights, 73; vaccine decision-making, 349, 369 Pasteur, Louis, 112, 120–1, 136 paternalism, 68, 134, 143, 196

Index pertussis: bacteria, 245; in Canada, 231; epidemiology of, 245–8; in Quebec, 321; outbreaks, 23, 263, 247–8, 321; in the United States, 247; vaccine, 9, 183, 239, 263–4, 279, 284; waning immunity and, 234, 247 Pharma, Big, 11, 13, 31, 69, 82, 96, 100, 283, 293, 324, 326, 344, 357 pharmaceutical companies: fight against, 26, 32; influence of, 35; trust in, 5, 100; and profit, 7, 101, 303, 315–16; relationship with economy, 76n6; relationship with government, 11, 356; relationship with medical professionals, 303; and vaccination campaigns, 102, 298 pharmacovigilance, 261, 273, 280–1 pneumococcal, 71, 176–9, 231, 234, 237–9 policy: makers, 14; public health, 23, 130, 144–6, 212–13; value neutral public, 87 poliomyelitis (polio): epidemiology of, 248–51; eradication, 29, 230, 249; outbreak, 249–52, 266–7; paralytic, 262, 264, 268, 280, 284n1; vaccine, 9, 25, 29, 35, 121–2, 249, 253n7, 253n8, 262, 267–8; vaccine induced, 267 political: factors in vaccine hesitancy, 123, 233 poverty: and vaccination, 71, 179–80 prayer: as means of healing, 26, 59, 70, 199 probabilities: misjudgment of, 83, 315; vaccine risk and benefit, 82–3, 86, 99 Protestant: communities in Canada, 18–21; conservative, 20; vaccine hesitancy, 23–4, 366, 368–9 pro-vaccine: activists, 13, 18; communication between

  393

anti-vaccine and, 130, 141, 343; medical establishment, 13 provincial: board of health, 133, 137, 139, 148, 151, 263–4; CAM regulation, 200–6; health plans, 158n27, 206, 296; health regulation, 219n2, 232, 277; and territorial jurisdiction over vaccinations, 233–4, 268, 359 public health: and active and passive surveillance, 225; campaigns, 68, 124, 146–51; culture and, 370–5; development of, 130–44, 148, 229; perceptions of, 5, 74, 343; perspective on vaccine hesitancy, 56, 57–61, 68, 74–5, 295, 361–2; and heuristics, 348–50; policy, 23, 130, 144–6, 212–13; practitioners, 17, 58; professionalization of, 144–5; promotion of vaccination, 70, 74–5, 230–2, 298, 331, 345; religion and, 56, 365–70; and science, 103; and vaccine safety, 261–84 Public Health Agency of Canada, 232, 237, 265na, 278 quarantine, 133, 135–6, 139, 142, 152, 245 Quebec: anglophone community, 131; Catholicism in, 18–19, 356; compensation for adverse effects from vaccines in, 359; culture, 18; diphtheria in, 145–9; health units in, 144, 148; and HPV vaccination, 173, 184; measles in, 185–6, 244, 370; nationalism, 18; pertussis in, 321; Provincial Board of Health, 137; public health law in, 141; smallpox in, 134–7, 138, 141; studies of vaccine hesitancy, 166–70, 216; vaccination in, 130–1, 146

394

Index

rabies, 121 racial: and ethnic divisions, 144; inequality and vaccine uptake, 71; minorities and vaccination uptake, 69–71 rationality: and decision-making, 61–4, 75, 82, 153, 357; and extrarationality, 35–9, 42, 346, 357; and personal preference, 91; and religion, 38–9, 72; and vaccine hesitancy, 294 reason: and decision-making, 357; evidence-based, 40–1, 306 regret: over vaccination, 64, 166 religion: accommodation of, 5; in Canada, 17–22, 359–60; changing demographics of, 359–61; and culture, 8–9, 34, 336; definition of, 9, 18; fundamentalist, 23, 26, 41, 360; and group norms, 365–6; and health, 365; and immigration, 18, 21, 22; lived, 46n21; minority, 5; and politics, 20; and risk, 97–8, 101; and sexuality, 295; and society, 20, 69, 72; and subjectivity, 17; versus spirituality, 9, 18, 22, 43n1; and vaccine hesitancy, 23, 26, 59, 61, 70, 183–6, 245, 248, 250–1, 348; and values, 86, 104 religious: accommodation, 58–9; belief and vaccination, 179, 185, 328; decline, 18–22; freedom, 5, 45–6n19, 56, 68, 73; group identity, 75; identity versus practice, 18–19; nones, 20–1; nones and vaccine hesitancy, 185; quasi- discourse, 17, 42; reasons for vaccine hesitancy, 17, 59, 185, 295, 357; resistance to state intervention, 137; rights, 346; understanding of the body, 6, 23, 326 reporting: and vaccine safety, 277–9 revaccination, 132, 133, 135, 141, 142

rights: French Catholic, 135; individual, 45–6n19, 368; individual and group, 61, 93, 122, 126n25, 141; individual versus state, 141; parental, 73 risk: acceptability, 82, 84; and agency, 97–9, 101; assessment and vaccine hesitancy/refusal, 10, 81, 121–2, 301–15, 356; bearers versus beneficiaries, 92–3; benefit argument, 116, 329, 346; -benefit assessment, 274–5; communication, 67, 68, 72, 74, 75, 102–4; communication perspective, 56, 61–3; control and, 96–7; definition, 87; and ethics, 101–2; familiar versus unfamiliar, 91–2; formula for, 87; impact of microbiology on, 121–2; knowledge deficit model and, 85–6, 357; and morality, 101, 295; and new vaccines, 274, 308; overestimation of, 61, 62; perceptions of, 326, 330; personal probability, 304, 315; problem of the label “at risk,” 298–9, 304; qualitative factors in determining acceptable, 89–102; quantitative approaches to, 88–9; and safety, 88; as social construct, 295, 315; and trust, 100–1; value judgments of, 83, 86, 105n2; voluntary versus involuntary, 94–6; and vulnerable populations, 99–100 rotavirus, 234, 270–2, 275, 330 rubella: in Canada, 231; outbreak, 23, 45–6n19, 112, 116, 238; vaccination and work, 235; vaccine, 9, 25–6, 35; vaccine ingredients and morality, 24–5 sacred: body as, 23; bond of physician and patient threatened by vaccine hesitancy, 293; scripture as authority, 81; texts and vaccination, 365

Index safety: concerns, 17; drug, 269; historical development of regulations around vaccine, 262–5; post-marketing vaccine, 277–80, 323; process validation and, 275–6; and risk, 83, 93; vaccine, 8, 17, 35, 118, 172, 232, 235, 261–84, 323, 324, 325, 348, 356; of vaccines as factor in immunization decisions, 8, 66, 71, 169, 171, 173, 175, 261, 272, 294, 305–6, 323 Salk polio vaccine, 121, 249, 253n7, 262, 267–8 sanitation: and disease control, 131–3, 136–7, 139, 140; infrastructure, 133 science: anti-, 326; Big, 11, 31; and decision-making, 85, 103; definition of, 35; and emotion, 330; mistrust/trust in, 5, 31, 39, 85, 102–3; and public health, 103; of risk assessment, 87 scientific: consensus on vaccines, 14, 17, 34, 123, 327, 356, 358; evidence and impact on vaccine hesitancy, 37–8, 349; ignorance, 82–3, 104; illiteracy, 82, 84, 102; method, 118; reason, 39–40 secular: liberalism, 360; society as hostile to religion, 69, 72 secularization, 19–20, 22 shingles, 234, 270. See also zoster Sikhism: in Canada, 20–2, 359 smallpox: in Canada, 142–4; in China, 113–14, 123, 125n10, 266; epidemiology, 115, 229; inoculation, 111–23, 124n3, 342; outbreak, 117, 123, 130–8, 141–4; vaccination, 112, 117–18, 123, 124n3; vaccine, 9, 140, 263 111–19; 125n12, 130–9, 154, 230, 275 social: control, 30; determinants of health, 11, 131; factors in vaccine hesitancy, 70–2; status, 69

  395

society: androcentric and patriarchal, 182, 308; distrust in mainstream, 71; dominance of medicine in, 303; liberal, 5, 20, 26, 32; multicultural, 68; obligation to, 5; post-truth, 33, 39; religion and Canadian, 20–2, 187; secular, 69, 72; vaccine hesitancy as feature of, 30, 93, 362; and values, 72; Western, 82 sociocultural: factors in vaccination uptake, 152; perspective on vaccine hesitancy, 57, 68–74 socio-demographic: factors in vaccination uptake, 166–71; traits of vaccine hesitant adults, 174 spiritual but not religious (SBNR): and anti-institutionalism, 27, 360; in Canada, 27; demographics, 45n13; and vaccine hesitancy, 27–8, 360 spirituality: alternative, 27; definition of, 9, 18; growth of, 22; Indigenous, 21; individual, 201; versus religion, 9, 18, 22, 43n1 stress: and decision-making, 16; emotional stress and vaccination, 65–6; reduction and alternative therapies, 199 subculture: alternative health, 10, 27, 197; anti-vaccination, 35, 36, 91, 98, 326; and decision-making, 14; Dutch Reformed, 24; power of, 32; religious and cultural, 366; spiritual but not religious, 27; vaccine hesitant, 9, 13, 34–40, 98, 100, 186, 355 subjective: illness as, 196; variables in decision-making, 16–17, 64 sudden infant death syndrome (SIDS), 39–40, 325

396

Index

territorial: health regulation, 263–5, 277; and provincial jurisdiction over vaccination, 232–4, 268, 359 tetanus, 140, 151, 166, 174, 176, 234, 239, 262, 325, 330 thalidomide, 85, 262, 273 Toronto (ON): religion in, 18, 27; smallpox in, 138, 142–4; vaccination in, 139, 149, 151, 153; vaccination and school entry in, 139, 147 trust: crisis of, 28–30, 41, 85, 153, 196; -diminishing incidents, 29; in experts, 27–8; or mistrust of authority structures, 71; or mistrust of government, 30, 33, 73, 100; or mistrust of health care professionals, 71–2, 218, 323; or mistrust of institutions, 27, 344; or mistrust in medicine, 5, 100, 356; or mistrust in science, 5, 39, 85; race and, 71–2; relationships of, 75; and risk acceptability, 100–1; in vaccination, 66, 218 truth: crisis of, 30–4, 41, 103, 196; importance of, 39; post-, 31, 33, 39, 43n3, 45n18 United States: immunization refusal in, 240; mandatory immunization policies in, 235, 240; measles in the, 245; pertussis in the, 247; politics and vaccine hesitancy, 123; vaccination exemption rates, 111 unnecessary: vaccines as, 66, 168, 169, 213, 343, 348 vaccination: arm-to-arm, 131–2; benefits, 83, 154; in conflict with belief, 70; as cultural norm, 366; and decrease of infectious disease, 111,

120; disincentives, 58, 60; and efficacy, 111, 242–3, 346; and ethnicity, 71; exemptions from, 59, 75n2, 375; and fertility, 9, 25; financial barriers to, 63, 296, 302, 316; government support of, 358; and group membership, 70–1, 75; and guilt, 80; and harm, 81, 116, 185, 324; history of, 112–19; incentives, 58; incomplete, 166–72, 175–8; knowledge of, 6, 28, 71, 181–2; mandatory, 46, 58, 111, 119, 141, 143, 234–5, 240, 37–5; medical opposition to, 130–1; as a moral responsibility, 179; paediatric, 64–6; programs, 84; rate as evidence of inequality, 71; refusal, 111; religious opposition to, 23, 56, 243, 245, 348, 357; scientific opposition to, 118–19, 131; as societal choice, 182; as social norm, 179. See also immunization. vaccine(s): accessibility, 158n27, 180, 302; activism, 13, 27; affordability, 17, 146, 151, 152, 179–80, 234, 296, 302, 316; animal material to create, 23, 118, 121, 156n9, 370; combined, 216; contaminated, 134; delaying, 166; delivery, 233; developers, 14; efficacy, 17, 62, 97, 185, 324, 325, 348; exemption rates, 111; failure, 6, 131, 137, 151; free, 146, 148, 151; and God’s plan/will, 9, 23–4, 70, 72, 101, 112, 116, 125, 185, 250, 326, 356; homeopathic, 210–11; human tissue to create, 23, 24, 26, 101; ingredients of, 35, 185, 273; and morality, 24, 26; -positive consensus, 28, 358, 366; -preventable disease, 14, 58, 80, 151, 182, 213, 218, 230–2, 234, 240–51, 266, 279, 294, 323 325, 343; privately purchased, 234; refusal/rejection, 5,

Index 343; regulation of, 274–7; and risk assessment, 10, 35, 356; safety, 8, 17, 172, 261–84, 323, 324, 325, 348, 356; as scientific achievement, 57; side effects, 17, 81, 131, 241, 248, 278–9, 333–4; symbolic nature of, 69; testing, 120, 267, 269–72, 308, 312, 314; as unnatural, 172, 186, 208–9; uptake and class, 11, 71; uptake tracking, 235–6; veterinary, 120; as Western intervention, 25–6 Vaccine Choice Canada (Formerly Vaccine Risk Awareness Network), 32, 45–6n19, 326, 372–4 vaccine hesitancy: active reflection model of, 294–5, 301; adult, 174–9; and allergies, 59, 62, 75n2, 278–9, 282; as anti-scientific, 112; and autonomy, 6, 10, 32, 58; and birth–order, 180–1; and chiropractic, 212–15; and class, 33, 129, 132, 135, 140; and complementary and alternative medicine, 206–11; culture and, 9, 23, 245; deficit model of, 294, 357; definition of, 8; demographics, 6; and differing values, 10; and disconfirming evidence, 37–8, 349; education level and, 33, 85–6, 149, 153, 157–8n23, 167, 170, 171, 173–4, 175, 177, 181–2, 186, 209–10, 314, 332, 342; and emotion, 13, 32, 64, 140, 156n11, 328–9; and ethics, 23–4, 56–76; and ethnicity, 70; and extrarational thinking, 35–7, 42, 346, 357; history, 115, 129–54, 356; and homeopathy, 37, 85, 203, 210–11; ignorance and, 80–1, 82; impact of health care provider on, 303–7, 312–13, 323–4, 331; and imperialism, 25, 134; and innovation, 123–4; and memory, 6,

  397

63, 348; and parenting, 11, 321–37; philosophical reasons for, 111, 348; and politics, 123, 233; procedural distress as reason for, 65–6, 68; as public health concern, 41, 57–61, 361–2; and race, 69–71; religion and, 23, 26, 59, 61, 70, 184–6, 245, 250–1, 348; religious and cultural roots of, 12, 17, 34, 41, 58, 69, 230, 245, 283, 346, 355; rural versus urban, 181; social factors of, 70–2; and social status, 69; and societal health, 355; spectrum of, 166; and trust, 28–30, 66, 218, 330; and vaccine rejection, 5, 8, 26, 322, 362n1; and vaccine uptake, 186; and violence, 135, 152 Vaccine Vigilance Working Group (VVWG), 281–2 value(s): definition of, 86; and harm, 87, 116; systems, 72, 114 varicella, 231, 238, 239, 280, 325, 330. See also chickenpox variolation, 111–23, 124n3, 266. See also inoculation: smallpox veterinary: vaccines, 120 violence: and vaccine resistance, 135, 152 Wakefield, Andrew, 36–7, 42, 46–7n22, 47n23, 67, 85, 327, 344–5 Wallace, Alfred Russell, 118–19 Western: health involvement overseas, 25; health professionals, 25; law and principle of autonomy, 96; medicine, 27–8, 195, 197, 356; non-approaches to health, 27 white-blood cells: and the development of immunity, 121 whooping cough, 150, 151, 230, 255, 298, 321

398

Index

women: as “at risk,” 299; and responsibility for family health, 150, 183, 308, 316; sexuality and vaccination, 297, 299; as target for public health education, 146–7, 149–50

Woodstock (ON), 23, 45, 116 World Health Organization (WHO), 111, 251, 269, 273, 274, 283, 361 zoster, 234, 270. See also shingles