Vaccine Hesitancy

Public Trust, Expertise, and the War on Science

Maya J. Goldenberg

• Publisher: University of Pittsburgh Press
• Year: 2021
• eBook ISBN: 9780822988014
• Topic: Philosophy
• Subtopic: Philosophy & Ethics in Science

Winner, 2022 PSA Women's Caucus Prize in Feminist Philosophy of Science Award

The public has voiced concern over the adverse effects of vaccines from the moment Dr. Edward Jenner introduced the first smallpox vaccine in 1796. The controversy over childhood immunization intensified in 1998, when Dr. Andrew Wakefield linked the MMR vaccine to autism. Although Wakefield's findings were later discredited and retracted, and medical and scientific evidence suggests routine immunizations have significantly reduced life-threatening conditions like measles, whooping cough, and polio, vaccine refusal and vaccine-preventable outbreaks are on the rise. This book explores vaccine hesitancy and refusal among parents in the industrialized North. Although biomedical, public health, and popular science literature has focused on a scientifically ignorant public, the real problem, Maya J. Goldenberg argues, lies not in misunderstanding, but in mistrust. Public confidence in scientific institutions and government bodies has been shaken by fraud, research scandals, and misconduct. Her book reveals how vaccine studies sponsored by the pharmaceutical industry, compelling rhetorics from the anti-vaccine movement, and the spread of populist knowledge on social media have all contributed to a public mistrust of the scientific consensus. Importantly, it also emphasizes how historical and current discrimination in health care against marginalized communities continues to shape public perception of institutional trustworthiness. Goldenberg ultimately reframes vaccine hesitancy as a crisis of public trust rather than a war on science, arguing that having good scientific support of vaccine efficacy and safety is not enough. In a fraught communications landscape, Vaccine Hesitancy advocates for trust-building measures that focus on relationships, transparency, and justice.

PART I

A WAR ON SCIENCE

1

THE “IGNORANT PUBLIC”

Recent headlines about measles outbreaks across the country, despite the availability of an effective vaccine, make it hard to escape the feeling that widespread rejection of science is on the rise.

— Kari Fischer

Intense public resistance to scientific claims on diverse health and environmental issues has invited speculation by concerned officials regarding both the source of the problem and the solution. An influential account came from the London Royal Society’s 1985 report, “Public Understanding of Science” (also known as the “Bodmer Report” because the committee was chaired by Dr. W. F. Bodmer).¹ The Bodmer report (1985) is commonly cited as the first to propose the theory that public ignorance of science prevents citizens from making mature, rational decisions in support of scientifically backed policies, although a similar sentiment was expressed earlier by the US National Commission on Excellence in Education (1983). The Bodmer report led to the formation of the Committee on the Public Understanding of Science (COPUS), which used grants and other incentives to initiate change in the attitudes of scientists toward outreach activities (Committee on Public Understanding of Science 1987). Internationally, governments have assembled portfolios on “science and society” (National Science Foundation 1995; House of Lords 2000; Canadian Biotechnology Secretariat 2006; European Commission 2008) intended to address this crisis of public misunderstanding and mistrust. Most have committed to cultivating two-way public engagement with science to foster better expert-lay relations in the often-contentious science-policy nexus.

Vaccine hesitancy and refusal in the industrialized North has been widely interpreted as a reflection of the public’s alleged misunderstanding of science. A narrative routinely repeated in the biomedical, public health, and popular science literature focuses on the problem of an ignorant and fearful public, susceptible to misinformation by antiscience interests. The problem of the ignorant public is alleged to explain why, despite concerted health promotion and outreach efforts, vaccine hesitancy continues to persist more than twenty years after the publication of the notorious Lancet study that galvanized current anti-vaccine sentiment.² According to this narrative, despite both the scientific community’s unequivocal rejection of the purported link between the MMR vaccine and autism and the finding that the science that first alleged the link was fraudulent, public fear of childhood vaccines persists and cases of measles, mumps, and pertussis (whooping cough) are on the rise in previously safe geographical locations. Fanning the flames of public mistrust of the scientific consensus, the narrative continues, is a well-organized anti-vaccine movement, comprising self-serving researchers and celebrity spokespeople, mobilized parent groups desperate to assign blame for their children’s autism, and a sensationalist media. This toxic combination results in our current, persistent, and growing problem of vaccine hesitancy. Years of intense public health and health promotion efforts to assuage public fears by correcting public misperceptions have been ineffective in countering these forces and elevating rates of vaccine compliance to reinforce herd immunity.

Yet this account also bears the markings of its narrators, the biomedical experts and policy makers who have unilaterally framed the vaccine hesitancy problem and thereby dictated its solution. The problem has been framed as a conflict of science versus ignorance, the former unproblematic and the latter entirely flawed. Here the beginnings of the war on science emerge, bolstered by an already solidified policy perspective focused on the publics, and more specifically the publics’ poor comprehension of science, as the root of the problem. The enemy in this so-called war is formed by the political mobilization of the so-called ignorant publics, while the allies organize around the anxiety of science not achieving uptake and the insult of expertise not being respected.

In this chapter, I demonstrate that while the public may indeed be prone to misunderstanding science and failing to appreciate relative risk, these characteristics do not explain vaccine hesitancy. The phenomenon described as “public rejection of science” is better understood as a rejection of the values underlying the scientific consensus. But the science and policy agencies tasked with remedying the problem of vaccine hesitancy do not recognize this alternative set of priorities, instead presuming public ignorance of science. Yet, characterizing one’s opponents as ignorant is self-serving, as it permits scientific agencies to dismiss their concerns and input in framing both the problem and the solution. It also insulates scientific institutions from a much-needed reflexive scrutiny of their practices (Wynne 2006). These moves are ultimately self-defeating, as public trust is damaged while health outreach programs miss their target. It is only under the auspices of public ignorance that the vaccine hesitancy problem seems intractable.

THE WAKEFIELD STUDY AND VACCINE CONTROVERSY

Most chronologies of contemporary vaccine controversy commence with the publication of the notorious 1998 study by British gastroenterologist Andrew Wakefield and colleagues, “Ileal-Lymphoid-Nodular Hyperplasia, Non-Specific Colitis, and Pervasive Developmental Disorder in Children,” in the Lancet (1998).³ Published in a top medical journal, this paper offered scientific evidence in support of an association between the MMR vaccine and the onset of autism in children. Years later, the data were found to be fabricated (Deer 2011a), but even prior to this revelation, the evidence presented was weak (Chen and Stefano 1998).

The research team presented an early report of a small case series where they claimed to have identified, using colonoscopy studies in twelve children with autism or related disorders, a new form of inflammatory bowel disease that they called “autistic enterocolitis.” They noted that in eight of the twelve cases, the parents attributed the onset of symptoms of autism to the MMR vaccine, which the children had received, on average, six days before their parents first observed behavioral changes. The team postulated a causal sequence in which MMR causes persistent measles infection in the gut (virology had not yet confirmed the finding of measles in the bowels of these children), which produces an enterocolitis that leads to the translocation of typically impermeable peptides into the bloodstream and, subsequently, into the brain, where they affect neurological development and could result in autism symptomology. Early reports offered only speculative causal accounts, and the authors suggested that further epidemiological and virological studies should be done to confirm their hypothesis. If they were correct, epidemiological analysis should show a rising incidence of autism after the introduction of MMR to the United Kingdom’s national vaccine schedule in 1988. Virological studies, they said, were “under way” to establish measles infection in the bowel specimens of those children in the study affected by autistic enterocolitis.

The paper’s scientific limitations should be clear. As a small case series, it could only build hypotheses (the causal claims) for further testing. This limit is not problematic—it merely invites further study. However, establishing a temporal association via parental recall and testimony is problematic, as the source is highly unreliable. The study also suffered from selection bias, as the sample was overrepresented by the children of parents who believed MMR caused their children’s autism.

In a commentary that appeared alongside the study, Chen and DeStefano (1998) further indicted the study’s methodology. Wakefield et al. were criticized for pursuing nonspecific pathological findings, for offering no clear case definition, and for failing to provide evidentiary warrant for their hypothesis being worth pursuing (as they lacked confirmatory virological evidence). As for the alleged temporal association, the commentators asked: is the finding “causal or coincidence”? Among one-third of children with autism, developmental regression is typically reported by parents shortly after the child’s first birthday. Because the MMR vaccine is typically administered around that time,⁴ the temporal association could be mere coincidence.

The Wakefield et al. study was controversial not only because of its methodology and highly speculative findings but also because of concerns about public fallout once the media picked up the story, so much so that the Lancet editors deliberated on the appropriateness of publishing the report (Horton 2004).⁵ News outlets had a history of publishing provocative medical research findings and failing to follow up when early theories were discredited or revised (Clarke 2008; Offit and Coffin 2003). The harms to public health that result from media-spun vaccine scares had already been witnessed in the pertussis vaccine controversy of the 1970s and 1980s (Blume 2006).⁶

Complicating matters, Wakefield surprised his colleagues by holding a press conference, timed closely to the study’s publication release, in which he suggested that single vaccines—one each for measles, mumps, and rubella—should be offered over a twelve-month period in place of the MMR triple-shot until a potential link between that vaccine, enterocolitis, and autism could be further studied (Offit 2008a). The Lancet study offered neither evidential support for the safety or efficacy of the single vaccine, nor any warrant for the proposed twelve-month temporal duration (Fitzpatrick 2004c).

In the months that followed, the study was systematically discredited by the medical establishment. A British Medical Research Council hearing concluded that there was no association between MMR and autism (Department of Health 1998). Following a shocking investigation into Wakefield’s financial conflicts of interest (Deer 2004), all but one of his coauthors criticized the study’s conclusions as being overly suggestive (Murch et al. 2004). Meanwhile, Wakefield was found to have violated ethics protocol in the study and was consequently stripped of his medical license (General Medical Council 2010). The Lancet followed by retracting the study (Editors of the Lancet 2010). Subsequently, London Times investigative reporter Brian Deer revealed that Wakefield had fabricated his data, publishing an exposé titled “Secrets of the MMR Scare,” a three-part series commissioned by the British Medical Journal (Deer 2011a; 2011b; 2011c). At each point of damning revelation of impropriety and serious scientific misconduct, public officials anticipated a resurgence of pro-vaccine sentiment. Yet, this attitudinal shift never materialized. To illustrate, a May 2013 USA Today headline read, “Measles Surge in UK Years after Flawed Research” (Cheng 2013).

RESPONSE TO A LOOMING PUBLIC HEALTH CRISIS

In the United States, vaccine specialist Dr. Paul Offit is the most public face of the scientific consensus position that there is no association between vaccines and autism, and he is celebrated for his outreach efforts to correct misperceptions of vaccine safety (George 2011). In his abundant writing on the subject, which include numerous editorials in biomedical journals (2007b; 2008c) and news sources (2007a; 2008b; 2011b), parenting books (Offit and Bell 1999; Offit and Moser 2011), practical guides for physicians (Offit et al. 2002; Offit and Hackett 2003; Offit and Jew 2003; Gerber and Offit 2009), and popular science books (Offit 2008a; 2011a), he has framed the defensive strategy now emulated by other vaccine advocates.

The vaccine defense strategy involves both negative and positive components. While the negative arm is a vigorous attack of the anti-vaccine message, the positive strategy is the corrective application of a strong body of scientific evidence showing no causal association between autism and vaccines. On the negative side, vaccine advocates highlight the weaknesses of the anti-vaccine message, beginning with the faulty and fraudulent science performed by Wakefield and colleagues (Offit 2008a; Fitzpatrick 2004a). Second, vaccine advocates point to the untrustworthiness of the anti-vaccine pundits, beginning with Wakefield, who had received payment for the Lancet study from a barrister representing parents suing vaccine companies for causing their children’s autism (Fitzpatrick 2004b, 2004c; Offit 2008a). Other untrustworthy pundits, in this reading, include celebrity spokespeople—especially the once central Jenny McCarthy (Mnookin 2011, 249–61; Offit 2011a, 149–54)⁷—who hypocritically, according to Offit, “indulge their own vanity by using injectable cosmetic botulinum toxin while reviling the same pharmaceutical industry for profiting from vaccines” (Brumback 2011, 1329), as well as disreputable entrepreneurs profiting financially from the growing industry of “alternative” autism research and treatment that is founded on public mistrust of mainstream science (Fitzpatrick 2009, 57–65; Offit 2008a; Hannaford 2013). Third, Offit and others blame the media (Offit 2008a, 176–95; Mnookin 2011, 160–69; Fitzpatrick 2004a, 139–44) and the US vaccine courts for distorting public perception of vaccine safety (Offit 2008a, 156–75; 2008b; 2008c). Fourth and finally, criticism is directed at parent groups who have mobilized support and research advocacy for families of vaccine-damaged children, offered information resources to the worried publics, and garnered media attention and political support for their emotional and unscientific claims. The National Vaccine Information Center (NVIC) in the United States and the British group JABS (Justice Awareness and Basic Support) are strongly reproached for playing an instrumental role in misinforming the publics, misdirecting health resources, engendering spurious controversy, and facilitating declining vaccination rates (Offit 2011a; Fitzpatrick 2004c, 2004d).

With the integrity of the anti-vaccine message undermined, the publics can now presumably be swayed by a generous offering of reliable science. Defenders of vaccines exalt the global health gains produced by mass immunization campaigns and offer a strong body of evidence in support of MMR’s safety record. In one such publication, written to assist physicians in addressing the concerns of their vaccine-hesitant patients, Offit and coauthor James Gerber explain that even though Wakefield’s MMR-autism thesis was not supported by biological or clinical findings, “several epidemiologic studies were performed to address parental fears created by the publication by Wakefield et al.” (Gerber and Offit 2009, 456, emphasis added). These studies, the authors seem to suggest, offer no scientifically relevant information but instead serve an important public outreach and educational function. Gerber and Offit enlist them to deftly dismantle three popular hypotheses regarding the dangers of vaccines:

(1) The MMR-autism thesis;

(2) Thimerosal-autism thesis—the theory that a mercury-based preservative used in vaccines with inactivated viruses causes autism;

(3) The vaccines “overwhelm the system” thesis—the theory that too many vaccines are introduced too soon into infants’ delicate systems, thereby causing harm, including autism.⁸

Taking on both the MMR-autism thesis and the alternative thesis that autism is caused by the mercury-based preservative thimerosal found in vaccines with inactivated viruses (such as polio and pertussis), the authors review twenty epidemiological studies that uniformly fail to make an autism-vaccine association. They highlight the reliability of the findings and the significance of these studies’ convergent conclusion. They note that “these studies have been performed in several countries by many different investigators who have employed a multitude of epidemiologic and statistical methods [ecological, case-controlled, retrospective cohort, prospective studies]” (Gerber and Offit 2009, 460). Furthermore, these studies rely on national vaccine records, which provide reliable historical data for excellent descriptive and observational studies. These records permit examination of national rates of autism before and after the introduction of the MMR combination vaccine into national schedules, as well as before and after thimerosal was reduced to trace amounts in vaccines (in response to public pressure, pro-vaccine advocates insist, and not because of sound safety concerns). These large-scale programs allow for a high level of statistical power, and the data are often comparable for meta-analysis due to similar vaccine constituents and schedules across national borders. Electronic medical records also facilitate accurate analysis of outcome data.

The evidence against the last theory—that vaccines can overwhelm the system—is more difficult to convey in accessible terms, as it comes from mathematical modelling of an infant body’s theoretical capacity to respond to immunological challenges. Offit relies on basic immunology and reassurances instead. In an interview with a parenting magazine, he declared: “Children have an enormous capacity to respond safely to challenges to the immune system from vaccines . . . A baby’s body is bombarded with immunologic challenges—from bacteria in food to the dust they breathe. Compared to what they typically encounter and manage during the day, vaccines are literally a drop in the ocean” (Howard 2005). Writing to healthcare audiences, he elaborates that “the average child is infected with four to six viruses per year . . . The immune response elicited from the vast antigen exposure of unattenuated viral replication supersedes that of even multiple, simultaneous vaccines” (Gerber and Offit 2009, 459).

Offit’s claims can be sourced to the work of immunologists Cohn and Langman (1990), who calculated an average young child’s immunological capacity and found it to far exceed the roughly two dozen vaccine antigens that they receive as part of routine childhood vaccination. Knowing that antibodies, the component of the immune system most capable of protecting against infection, are made by B cells, and that B cells make antibodies against only one epitope (an immunological unit), the calculation can be made by estimating the number of B cells in the bloodstream against the average number of epi...

Table of contents

• Cover Page
• Title Page
• Copyright Page
• Dedication
• Contents
• Preface
• Acknowledgments
• Introduction. Vaccine Hesitancy in the Industrialized North
• Part I. A War on Science
• Part II. A Crisis of Trust
• Conclusion. Rebuilding Trust
• Notes
• References
• Index