Vaccinations and Public Concern in History

Legend, Rumor, and Risk Perception

Andrea Kitta

• Publisher: Routledge
• Year: 2012
• ISBN:
  9781136577086
• Edition: 1
• Topic: Historia
• Subtopic: Historia social

Vaccinations and Public Concern in History explores vernacular beliefs and practices that surround decisions not to vaccinate. Through the use of ethnographic, media, and narrative analyses, this book explores the vernacular explanatory models used in inoculation decision-making. The research on which the book draws was designed to help create public health education programs and promotional materials that respond to patients' fears, understandings of risk, concerns, and doubts. Exploring the nature of inoculation distrust and miscommunication, Dr. Andrea Kitta identifies areas that require better public health communication and greater cultural sensitivity in the handling of inoculation programs.

1 Introduction

INTRODUCTION

The video begins with gentle piano music and a simple dedication to a friend named Gabrielle (Gabby) Swank. Information about this young woman is juxtaposed with pictures of her laughing and posing for a cheerleading picture. Then we are told that one day, this all changed. A picture of the Gardasil vaccine appears and we learn that “Gabby was diagnosed with the inflammation of the central nervous system as a result of the Gardasil vaccines” (Gardasil 2009). We learn she is no longer a cheerleader and lives a life of constant pain, suffering from seizures, headaches, paralysis, and other disorders. Now the picture of Gabby is not of a smiling young woman, but rather shows her in a hospital bed. We see pictures of her medications, as we learn that she now spends most of her time sleeping or seeking medical care. We learn that Gabby’s mother feels guilty for giving her daughter the vaccines, even though it was only to protect her from a family history of cervical cancer. Then the video tells us that Gabrielle knows she is dying. Again we see pictures of her before the vaccination juxtaposed with a quote from Gabby herself, “I’ve accepted the fact it’s happened to me, but I’m tired of hearing of other girls it’s happened to” (Gardasil 2009). We see more smiling photos prior to the incident and more quotes from Gabby and her family stating that if they could go back, they would not get the vaccine and would have gotten regular pap smears instead. We are told that twenty-eight women have reportedly died as a result of the vaccine and that thousands have reported reactions, but the FDA (Federal Drug Administration) and CDC (Centers for Disease Control) have kept the vaccine on the market because the benefits outweigh the risks. The viewer is asked to take action and is given the website for the National Vaccine Information Center, which gives additional information, links, and other personal stories. The video itself has 944 comments, both positive and negative. But is it true?

In spite of the success of the childhood inoculation movement, the public has increasingly asked questions about the safety and efficacy of vaccines. Recent research and media coverage also shows that parents are increasingly choosing to not vaccinate their children. For instance, one study of nearly 1,500 doctors indicated that 93% of pediatricians and 60% of family physicians had seen at least one patient who refused a vaccination for his or her child (Freed et al. 2004). A 2003 study of reasons for choosing not to vaccinate reported that most parents lacked sufficient knowledge of how vaccinations work (Ritvo et al. 2003). Factors isolated by other researchers include: religious or philosophical objections, fear of government control in areas of personal choice, concern about safety and/or efficacy, beliefs that vaccine-preventable diseases do not pose a serious health risk, certainty that alternative treatments are superior, concerns that vaccines are promoted for the sake of financial gain, and belief that vaccines are not “natural” (Health Canada 1996; Bedford and Elliman 2000; Wolfe and Sharp 2002; Kata 2010; Bean 2011).

Nevertheless, the evidence in favor of vaccination is very strong if one examines the recent inoculation history of countries such as Great Britain, Sweden, and Japan. A decline in the numbers of children vaccinated in these countries has had immediate effects. In Great Britain, over 10,000 cases of pertussis and thirty-six deaths were reported following a decrease in vaccination rates in 1974–1978 (Health Canada 1996). In Japan, which had a vaccination rate of 70% in 1974 before dropping to 20–40% in 1979, there was an increase from 393 cases of pertussis to 13,000 cases in that period. In Sweden, the incidence rate rose from 700 cases of pertussis per 100,000 children in 1981 to 3,200 cases per 100,000 children in 1985 due to a decrease in vaccinations (Health Canada 1996). These studies, taken as a group, present a powerful argument for the need to understand reasons for vaccination reluctance.

This book explores vernacular beliefs and practices that surround decisions to not vaccinate with the primary aim of providing concrete recommendations for improving inoculation promotion programs. The rationale of this work is consistent with a number of studies that apply vernacular health belief research to health education and health promotion policy. These studies use as their central premise the notion that health education must be based on community understandings of risk, and that such understandings require ethnographic investigation (Hufford 1997; O’Connor 1995; Brady 2001; Goldstein 2004). Goldstein notes, “Culturally sensitive health education must adapt itself to existing beliefs, attitudes and practices within a community rather than expect that the community will change to fit the educational program” (2004: 56). Ideally, health education programs are community-based; involve collaborative partnerships between communities, researchers, and service providers; and make use of local concerns. Understanding health choices is dependent on exploring the variety of cultural concerns and influences that constitute risk for the communities and individuals in question. Risk categories and risk perception are multifaceted, culture-bound, personal, and political. As Sobo notes, research on risk perception suggests that the meanings associated with a given risk affect how individuals “personalize, internalize, and apply to themselves the information they receive about that risk” (1995: 3).

This project draws on ethnography, media, Internet, and narrative analyses to explore the vernacular explanatory models used in inoculation decision-making.¹ Many of the studies mentioned above touch on reasons why parents decide not to vaccinate. This research, however, does not take the analysis far enough. The majority of knowledge, belief, and behavior studies on inoculation decision-making are based on surveystyle self-report. As has been shown consistently with health risks taken in relation to AIDS (e.g. Goldstein 2004), smoking, breast examinations, and pap tests, risk perception is not easily accessed through survey methods, but requires the greater ethnographic and qualitative study that a folklorist can provide. Powell and Leiss state, “Problems in communicating about risk originate primarily in the marked differences that exist between the two languages used to describe our experience with risks: the scientific and statistical language with experts on one hand and the intuitively grounded language of the public on the other” (1997: 26). In order to even begin to understand this language, ethnographic research skills are necessary as vaccination narratives are presented and communicated in a variety of ways through the use of traditional narratives and beliefs. The most common genres used in vaccination discourse are contemporary legends, rumor, and personal experience narratives, or in some cases, a combination of the three.

Contemporary legends are “unsubstantiated narratives with traditional themes and modern motifs that circulate in multiple versions and are told as true or at least possible” (Turner 1993: 5). They may or may not be believed, but are believable, and they are often told by a “friend of a friend” (FOAF). Tellers often change the narrative format of contemporary legends to adapt them to the geographic or cultural environment, a process known as oikotypification (Von Sydow 1948). These changes, along with the use of personal names, are often used to add credibility to the story, thus making it more believable (Dorson 1964; Mullen 1978; Brunvand 1981).

An example of an anti-vaccination legend would be the following, which I collected from one of my informants:

So, I heard that MMR causes autism. That’s why there’s so many kids with autism now, allergies too. There’s something in there, an ingredient, I think it’s a preservative, so the vaccine lasts longer. Well anyway, it’s doing something to kid’s brains, I’m not sure what, and they end up developing autism. It happens pretty quickly as well, usually within a few hours or days of getting the shot. I hadn’t heard about it before, not until I had my baby, and all these other mothers and I were talking while waiting for the nurse. Well, these moms knew all about it. One lady had a friend out in Placentia and it happened to her. Her daughter was fine, until she got her MMR needle. Now they need all kinds of assistance and they don’t have enough to cover her care and all. I don’t know what to think of that. (Lay person with children. August 17, 2006)

Contemporary legends are characterized by “persistence, pervasiveness, and persuasiveness” (Kapferer 1996: 246). They exist primarily in a conversational forum and do not tend to exhibit definitive texts or formulaic opening and closings (Paul Smith 1998: 493).

Contemporary legends are closely akin to rumor, but there are significant differences. Whereas both rumor and legend are believable and localized, rumors may not always have a narrative (Tangherlini 1998). Instead they function more as a “hyperactive transmissionary state” (Tangerlini 1998) rather than a specific genre . Rumor tends to be defined as a “brief, oral, non-narrative statement based on hearsay” (Turner 1993: 4) whereas the legend is often described as having a stronger and more elaborate narrative component. The tendency to shorten legend forms and embed them in other types of expressions complicates the definition. Because of their intertextuality and the blurring of genres, Patricia Turner suggests emphasizing the complementary nature of the two forms rather than their distinctiveness, understanding rumor and legend as part of a clearly related narrative complex (1993: 5). Although vaccine belief can be articulated through the use of rumor, it is more commonly expressed in contemporary legends and personal experience narratives. However, some of my informants only knew vaccination rumors. For example, informants reported that they knew that the MMR vaccine caused autism, but they did not recall how they knew that, who told them, or any additional details. Some rumors associated with vaccination include that childhood vaccinations are used for profit, typically to benefit pharmaceutical companies or the government, and have no known affect on immunity. Additional rumors involve the propensity for certain batches of vaccines to have higher than normal adverse reaction rates.

Personal experience narratives are told in the first person, in prose, and typically (but not always) contain non-traditional elements because they focus on the events experienced by the teller. The form, style, and function of the narrative are what make it traditional, as opposed to the content, although many other forms of folklore, such as contemporary legends, have been known to mirror elements of the personal experience narrative. The functions of these stories may vary, but often involve one or more of the following: entertainment, cautionary tales, and the presentation of the character or personal values of the storyteller (Stahl 1975, 1977, 1985, 1988, 1989). This example comes from my informant interviews:

I truly believe that my little girl has autism because of her MMR vaccine. I read all about it on the Internet, other babies with the same story. One day, they’re fine. Then they get their needle, then suddenly, out of nowhere, they are diagnosed with autism. Everyone tells me I’m wrong, but how could I be? There were no signs of autism, of anything, before that needle. (Lay person with children. April 22, 2006)

The Internet is an excellent forum for personal experience narratives, as will be discussed later in Chapter 2.

OBJECTIVES

This book’s research is organized around the following four objectives:

1. Vernacular health research and methodological symmetry: My study used in-depth risk-perception collecting methodologies, devised through a strategic combination of face-to-face interviews and narrative analysis to explore the “explanatory models” (Kleinman 1980) of vaccination use found within the lay public and the professional community. Samples included those who chose to inoculate, a similar group who chose to not inoculate, and pediatricians, chiropractors, and public health nurses. Although lay models of health and illness tend to differ from biomedical models, this does not necessarily lead to the conclusion that physicians, medical researchers, or medical health educators hold strictly to a single shared viewpoint. One of the central strategies of vernacular health research is what David Hufford has termed “methodological symmetry”, a methodology based on the theoretical premise that the same questions must be applied to the medical community as are applied to the lay community (1997). Methodological symmetry frequently reveals complex perspectives encountered in both communities.

2. Lay public uses and perceptions of Internet-based health information: Due to the role currently played by the Internet in providing health information to the lay community, the study explored the message of Internet anti-vaccination groups and the impact of those messages on the lay public. Recent North American studies have shown that approximately 74% of Americans and 72% of Canadians are online (Internet World Stats 2009) and that currently 80% of adults who are online use the Internet to find health information (Fox 2008; Taylor and Leitman 2002). Approximately 70% say that the information they find online influences their health decisions (Fox et al. 2000) and according to Wolfe, Sharpe, and Lipsky, of these 80%, 52% of people report that “almost all” or “most” of the information they find is credible (2002: 3245). Anti-vaccination websites are most popular in areas such as the United States, Australia, New Zealand, the United Kingdom, and Canada (Nasir 2000: 732). One study, which reviewed 722 anti-vaccination websites, found that 100% of these sites claim that vaccines cause idiopathic illness, 95% claim that adverse vaccine reactions are underreported, and 91% reported that vaccine policy is motivated by profit (Wolfe, Sharp, and Lipsky 2002: 3246–3247). Medical professionals are acutely aware of information found on the Internet and of the existence of the anti-vaccination movement itself. Nevertheless, many of the suggested solutions, such as further education of the public, are non-specific and offer no concrete recommendations. Additionally, my own work and other recent research (Kata 2010) have argued that the previous methods of education have failed both in the recent and historical past. Clearly the use of health information on the Internet has created a new kind of medical consumer in North America, one who has access to an abundance of information and ideas (Goldstein 2008). Lay readers of Internet health materials are not, however, simply passive receptors of the information they contain (Goldstein 2000, 2004). The means by which members of the lay community access Internet information and how they process that information is crucial to understanding vernacular health decision-making related to the reception of anti-vaccination messages.

3. Media framing of risk: It is central in a study of this type to explore the interchange between the news media and the beliefs of the general population. As Powell and Leiss note, “Society as well as nature abhors a vacuum … Events reported in the media (some of them alarming) become the substantial basis of the public framing of … risks” (1997: 31–32). Rumors and medical legends related to ineffective vaccines, “cash cow” vaccines developed to fill the pockets of pharmaceutical companies, deadly side effects, and conspiracy theories appear regularly in the media (and on the Internet). The post-September 11^th media representation related to the smallpox vaccine created a degree of concern and distrust around issues of vaccine safety, efficaciousness, and production. More recent scares, such as the avian flu virus, Severe Acute Respiratory Syndrome (SARS), and H1N1 have further contributed to these issues (see, e.g., Abraham 2009). The media treatment of such issues is often mentioned in expressions of concern related to medical distrust, and when legend and rumor propagated by the media take the place of medical information, perceptions of risk can escalate. Therefore, this book provides not only an analysis of media handling of vaccination issues but also lay retention and interpretation of media discussions.

4. Public health education: The book aims to help build public health education programs and promotional materials that respond to patients’ real fears, real understandings of risk, real concerns, and real doubts. Accordingly, the text explores the nature of inoculation distrust and miscommunication, and identifies areas that require better public health communication and greater cultural sensitivity in the handling of inoculation programs.

CHAPTER OVERVIEW

Vaccinations and Public Concern in History: Legend, Rumor, and Risk Perception begins with an introduction to both the anti-vaccination movement and the discipline of Folklore in general by defining key terms, such as contemporary or urban legend, rumor, and personal experience narrative. Past scholarship on vernacular beliefs and practices are considered and the objectives of the manuscript are laid out, as is the construction of the chapters. The reader is also introduced to the history of inoculation and immunization, the past and current climate of health and inoculations, and common themes in history of vaccine beliefs which existed in the past and continue to exist today.

Chapter 2 focuses on how the lay public demonstrates and communicates its beliefs. The chapter discusses the forms in which folklore is presented and the methods used by the lay public to obtain, interpret, and utilize health information. Vaccination narratives are presented and communicated in a variety of ways through the use of traditional narratives and beliefs via word of mouth, the Internet, and broadcast media. Accordingly, the chapter considers the use and dissemination of information on the Internet (the manner in which the public accesses, uses, and processes health information) as well as the types of sources used, including the health information of major organizations, personal websites, email, list serves, and media representation.

The ways in which lay people demonstrate and communicate their beliefs is the topic of Chapter 3, which includes five categories of contamination legends (including the MMR/autism debate) and the history and logic behind conspiracy thinking. These stories, which come from a variety of sources, frequently involve tales of warning and terror. These types of narratives are discussed with specia...

Table of contents

• Cover
• Halftitle
• Title
• Copyright
• Dedication
• Contents
• Acknowledgments
• 1. Introduction
• 2. Genres and Communicative Forms
• 3. Folkloric Content in Vaccine Narratives
• 4. Medical and Ethical Issues as Perceived by the Medical Community
• 5. Notions of Risk
• Appendix
• Notes
• Bibliography
• Index