Original Article

Vaccine resistances reconsidered: Vaccine skeptics and the Jenny McCarthy effect Samantha D. Gottlieba,b a

University of California, Berkeley, Center for Science, Technology, Medicine and Society, 543 Stephens Hall, #2350, Berkeley, CA 94720 USA E-mail: [email protected] b Department of Anthropology, Geography, and Environmental Studies, California State University, East Bay, 285000 Carlos Bee Boulevard, Hayward, CA 94542, USA

Abstract Recent data and increased vaccine-preventable disease outbreaks suggest that a growing number of US parents choose not to vaccinate their children. Popular media have responded to this phenomenon by emphasizing refusers’ moral failings and irrational fears. This article explores vaccine skeptics’ objections and argues that their critics miss fundamental reasons for resistances. Drawing on ethnographic research with a community of vaccine skeptics in southern California, a consideration of a leading vaccine researcher’s responses to vaccine critics and an analysis of Jenny McCarthy’s condemnation of current vaccine practices, this research considers why even parents who have accepted some vaccines, but not all, distrust vaccines and their proponents. Parents’ skepticism merits new forms of engagement by physicians and other vaccine advocates. As with any health intervention, vaccines can present some risks to a small number of recipients; when public health and clinical messages minimize parents’ fears, they may increase parental doubt. The voices of parents who choose to opt out of or to alter the normal vaccine schedule reveal important expressions of biomedical resistance. BioSocieties advance online publication, 17 August 2015; doi:10.1057/biosoc.2015.30 Keywords: vaccines; parental resistance; Jenny McCarthy

Introduction Vaccines are designed to create absences: absence of illness and disease; absence of future interventions; absence of the transmission of contagion. A successful vaccine mitigates or eliminates the threat of contracting the illness it is designed to prevent. Absence is intrinsic to its effectiveness. When nothing happens, as one public health official commented at a 2008 immunization coalition meeting in Southern California, the vaccine is a success: “We tend to get complacent [about vaccinating] … because we no longer see the disease”. In the United States, vaccination is part of every new parent’s life, whether she chooses to vaccinate or not. It is a rite of passage for most US parents, revealing the intimate and domestic, as well as community beliefs about public and social responsibility. © 2015 Macmillan Publishers Ltd. 1745-8552 BioSocieties www.palgrave-journals.com/biosoc/

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Public health and medical science consider vaccination to be one of the most successful public health interventions (Rose and Blume, 2005; Salmon et al, 2006; Leach and Fairhead, 2007). Vaccines illuminate beliefs about health and privilege, motivate government control and citizens’ resistances, and capture both individual-level and population-level imaginations of the body (Leach and Fairhead, 2007). They are part of larger global supply chains, and their implementation is implicated in political and strategic logics (Muraskin, 2012). Vaccines remind us that “discourses on health are never just about health. …[they] function as repositories and mirrors of our ideas and beliefs about … what it means to be human, the kind of society we can imagine creating and how best to achieve it” (Robertson, 2001, pp. 294–295). Departing from global strategies to increase immunization rates with campaign models (Streefland et al, 1999), vaccination promotion in the United States ties immunization coverage to school entry requirements. As a result, nearly all children who attend school in the United States receive their vaccines by age 5. Public health advocates worry that herd immunity to many preventable diseases is always on the verge of disappearing. Herd immunity is effective when a very high rate of vaccinated people in the general population protect the unvaccinated, but the ideal rates for each preventable disease differs, and therefore no one target vaccination rate can elicit population-wide herd immunity to all diseases (Fischetti, 2013). 2013 CDC data show that among children of 19–35 months, only Hepatitis A and rotavirus vaccines have vaccination rates lower than 85 per cent (Black et al, 2013). Nationally, early childhood vaccination coverage exceeds the target goals set by Healthy People 2020, and <1 per cent of US children 19–35 months have received no vaccines at all (Black et al, 2013). Almost all American children have received at least one vaccine by 3 years old; however, for any given vaccine, they may not have completed the full series needed for immunity. High numbers of vaccinated children mean it is difficult to increase the overall percentage vaccinated, and those who remain unvaccinated may represent the hard-to-budge vaccine refusers or families unaware of subsidies who have concerns about vaccine costs. These US data require caveats. We cannot lump all vaccines together, as though there were no variation in uptake. Some vaccines have low utilization rates, and this may be cause for concern; conversely, vaccination is more critical for population-level benefits for some diseases than others. Vaccine rates among adolescents are different than the rates among younger children (Elam-Evans et al, 2014), which data analyses do separate out, but vaccine promotion messages do not always make the distinction. Even with high nation-wide coverage, there are regions and communities with low rates (Black et al, 2013). These discrepancies are traditionally associated with health disparities due to race, poverty or immigration, but recent evidence suggests higher-income communities1 may contribute significantly to the rising vaccine refusal rates (Nagourney and Goodnough, 2015). Although the unvaccinated and undervaccinated are a legitimate concern, especially for the immuno-compromised and children not yet old enough for vaccines, the responses from mainstream US media and vaccine advocates have vilified parents who refuse to vaccinate

1 For example, parts of California with wealthier communities have vaccine exemption rates in the double digits (Nagourney and Goodnough, 2015). The 2014–2015 data of kindergarten immunization rates across the state of California show a difference between public and private school immunization rates, with private schools having lower immunization rates overall (California Department of Public Health, Immunization Branch, 2015). This trend holds looking further back over the years, as well. 2

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or who under-vaccinate their children. These condemnations do not engage with the spectrum of vaccine acceptance behaviors or the complexity of parental beliefs. The discredited former physician Andrew Wakefield and the actress and model Jenny McCarthy often bear the blame for parents’ current misconceptions about vaccine safety (Perry, 2013; Hiltzik, 2014); however, assuming their influence is the primary driver for vaccine skepticism oversimplifies parents’ resistances. Mnookin (2012), an American writer who condemns vaccine skeptics, proposed “the near-impossibility of having an honest discourse about vaccine side effects” to explain the limitations of current iterations of certain vaccines.2 Vaccine advocates bear some responsibility for the increasing distrust of vaccines precisely because of Mnookin’s assumption that “honest discourse” would only harm vaccination rates. Although he invokes impossibility to condemn skeptics’ irrationality, particularly the vaccine critics of the 1980s, I frame this impossibility differently: it damages vaccine skeptics’ trust in medical experts. Advocates’ and skeptics’ respective positions may be fundamentally incommensurate because skeptics’ concerns are not treated as worthy of engagement. Proponents fail to understand underlying reasons parents opt out of immunizations (cf. Hobson-West, 2003; Yaqub et al, 2014, pp. 1, 6) and accuse them of emotional, and implicitly unscientific, responses. These resistances and questioning of vaccine safety are not self-evidently negative (Kaufman, 2010; Kirkland, 2012) but rather may reflect an earnest desire to engage with the ambiguities vaccination presents (Leach and Fairhead, 2007, p. 3). Jenny McCarthy figures prominently among mothers who express vaccine skepticism, and her influence extends to those who accept most vaccines. Her concerns provide the lens for the expressions of resistances I will consider here. Her publicly proclaimed objections include: questioning why children receive so many vaccines; questioning the normalized, and therefore homogenized, vaccine schedule; challenging experts’ perceived condescension toward parents’ concerns; and related to the latter two objections, decrying institutional decrees that she perceives as obscuring pharmaceutical interests. Among the informants I interviewed, a variety of parents echoed these concerns, which demonstrate parental interest in vaccine science, not unsophisticated or disengaged refusals. This article considers parents’ objections to current vaccination practices and argues that vaccine advocates insufficiently engage with the worries parents articulate.

Methods This article draws on research initially focused on the human papillomavirus (HPV) vaccine, Gardasil, conducted in the United States from 2006 to 2010. During fieldwork, my informants demonstrated I needed to understand voices of vaccine skeptics to contextualize the specific responses to Gardasil. Concurrent observations at a Southern California Immunization Coalition (SCIC) suggested that the public health rhetoric around vaccines was directed at an imaginary audience. Skeptics and advocates seemed to be discussing the same thing – whether or not to vaccinate – yet, they did not engage with each other on the same terms. The data include 16 months of ethnographic observations at SCIC’s quarterly meetings, attended, on average, by more than 50 immunization advocates from the public, private and 2 Mnookin (2012) specifically refers to the decreased efficacy in the current pertussis vaccine. © 2015 Macmillan Publishers Ltd. 1745-8552

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non-profit sectors; a 2008 Centers for Disease Control (CDC) annual immunization conference in Atlanta; and Paul Offit’s public comments, a leading vaccine researcher and author of books endorsing vaccines.3 These fieldwork sites echoed national media coverage of vaccine advocates’ responses to immunization debates in the United States. Among vaccination advocates, I interviewed 10 individuals engaged in vaccine promotion and delivery: three physicians at a low-income clinic; the medical director of a large Southern California school district; and six public health officials, three of whom worked at the public health immunization department and were responsible for coordinating the activities of the SCIC. In addition to these one-on-one interviews, I also spent time with individuals involved in vaccine promotion at both the county public health department level and at the national level. Between 2008 and 2010, I designed part of a CDC-funded research project conducted by a Southern California sexually transmitted diseases department to understand parental acceptance of the HPV vaccine, which included oversight and semi-regular meetings with CDC leaders in immunization. This provided insight into some public health departments’ conversations about HPV vaccine uptake and more general strategies of vaccine promotion. My involvement in the early stages of data collection for this project facilitated my access to additional research sites to observe clinical flows for administering a full range of early childhood and adolescent vaccines. In December 2007, I was invited to apply for a job within the county’s immunization department, but I discontinued the application process, deciding it would compromise working with vaccine skeptics. I also conducted research with a convenience sample of parents in a southern California community of slow and non-vaccinators. The primary inclusion criteria were: being a parent of at least one child under 18 and living in the southern California greater metropolis. Social networks influence attitudes toward vaccination (Brunson, 2013), and I found that email listservs and a monthly in-person parents’ group, called NaturalMoms here, rapidly shared knowledge and attitudes about vaccines.4 Because I did not seek consent from every member of the listservs, I do not quote their words here, but the overall themes of their conversations inform my analysis. All parents observed and interviewed were mothers. NaturalMoms organized around what its website called “green living” and an interest in natural health practices, such as unmedicalized childbirth. Through semi-unstructured, face-to-face conversations, I interviewed seven women who identified as vaccine skeptics twice and conducted a one-time interview with a self-identified pro-vaccines mother. Three of the skeptical mothers attended NaturalMoms; others heard about my study through the listserv or through friends who forwarded them the emailed invitation to participate. Except for the pro-vaccine mother, all mothers whom I interviewed accepted some vaccines but not others. None refused vaccines outright. This is an important caveat but offers a chance to understand the complexity of refusals. I also draw upon informal conversations and meeting topics during the monthly NaturalMoms meetings I attended between January and July 2008. These evening meetings, held in a library’s spacious meeting hall, consisted of a fluctuating group of about 15 women. I received permission to attend the meetings from the local chapter’s president, Rebecca; she asked that I pay annual dues to participate in the group for a year, and dues included a subscription to the 3 All Paul Offit quotations come from public forums or the paid-attendance CDC conference. 4 Although not a specific focus of the research, there was a linguistic solidarity among informants that suggested the loosely defined community legitimized each others’ ideas and terminology. 4

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group’s national and local email listservs. At each meeting, Rebecca introduced me and my project to ensure parents knew who I was. I also volunteered at the chapter’s booth during a natural health fair. During the research period, I was not a parent. Although I thought this would make me a more objective observer, it also limited the opportunities to socialize with parents in less formal settings. I found the vaccine skeptics to be sympathetic and persuasive. Their scientific claims at times troubled me, but I found their concerns to be intimate and nuanced. Their words remained with me years later as I considered vaccinating my first child. One limitation of the convenience sample is that I did not speak to parents who believed vaccines caused their children’s developmental delays. Some mothers stated their children had vaccine-related adverse reactions, which informed their future vaccination choices, especially when their pediatricians downplayed the significance of these reactions. In this article, Jenny McCarthy is the only parent who believes vaccines affected her child’s development. This study conformed to institutional review board criteria, and all those interviewed signed informed consent.5

Media Imaginings of Vaccine Refusals In 2014, the Los Angeles Times ran a story, “The Toll of the Anti-Vaccination Movement in One Devastating Graphic” (Hiltzik, 2014). The online article features an interactive map from the Council on Foreign Relations (CFR) that visualizes global vaccine-preventable disease outbreaks. In spite of its availability on CFR’s Website since 2011 (Farley, 2014), the map captured internet media attention 3 years later. The LA Times article explicitly attributes vaccine refusals to the pertussis, or whooping cough, outbreaks in California, a problem that has persisted for nearly a decade. Pertussis is a proxy for vaccine acceptance in the CFR map, but it has had a pivotal role in earlier vaccine resistances and recalls. The current combination vaccine in use for pertussis, the diphtheria-tetanus-pertussis vaccine (DTaP), is less effective than its predecessor, known as DTP (Blume and Zanders, 2006). Vaccine controversies around DTP in the 1970s and 1980s were based on “real uncertainties surrounding the safety and efficacy” (Baker, 2003, p. 4003). The policy decisions to use an acellular vaccine in the United States reflect complex health policy evaluations of risk acceptance and benefits (Blume and Zanders, 2006). The LA Times’ oversimplification of one vaccine-preventable disease represents other examples of how the mainstream media obscure the nuances of broader vaccine refusals in the United States and the complexities of vaccine science, more generally. A recent study explored directly whether non-medical exemptions (NMEs), which allow parents to forgo their children’s vaccination for religious or personal reasons, might have contributed to the 2010 California pertussis outbreak (Atwell et al, 2013). The authors found pertussis outbreaks clustered around NMEs, but they concluded they are only one reason that there has been an increase in pertussis cases (Atwell et al, 2013).6 The CFR map provides useful data on disease rates but hardly confirms, as the LA Times’ article suggests, who bears responsibility for increasing pertussis infections. This example is one of many that invite more critical 5 All names are pseudonyms, except for Paul Offit and Jenny McCarthy. 6 The reduced efficacy of DTap, compared with the predecessor, may also contribute to increased pertussis cases (Blume and Zanders, 2006, p. 1830), with waning immunity even after vaccination, making more people vulnerable. © 2015 Macmillan Publishers Ltd. 1745-8552

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interpretations of the rise in vaccine-preventable illnesses and the growing number of vaccine skeptics. The story of vaccine resistances is not easily distilled into an interactive visualization. During the revision of this article, a measles outbreak originated at Disneyland affecting Southern California and spread to a number of other states (Nagourney and Goodnough, 2015). Between January and March 2015, 178 cases of measles were reported (Centers for Disease Control, n.d.(b)), compared to the 2008 San Diego measles outbreak in which 131 cases were recorded between January and July (Hassidim et al, 2008). The difference between these numbers is notable, but at the same time, it is unclear whether this indicates a broader trend. Three US eradication campaigns in 1966, 1978 and 1993 have targeted measles (Orenstein et al, 2004). The 1993 effort resulted in less than one case/million among the US population between 1997 and 2001; the odds of coming into contact with someone infected with measles were extremely unlikely (Orenstein et al, 2004). Rates of unvaccinated US children are on the rise, which suggests pro-vaccine messaging does not persuade parents and may inadequately counter informal discussions of potential vaccine dangers. In California, parents increasingly decline vaccines (Hubert-Allen and Aliferis, 2013; Standen and Brooks, 2013). Although NMEs are not the only reasons for the increase in preventable diseases, they are associated with higher rates of vaccine-preventable illnesses (Institute of Medicine, 2013). The 2015 outbreak has elicited concerns about non-vaccinators’ threat to the general public and prompted politicians including President Obama to address vaccine safety (Associated Press, 2015). The highest national vaccination rates are among the states that only permit medical exemptions, which is especially notable because these states, Mississippi and West Virginia, fare the worst in other health outcome measures (Blinder, 2015). In 2012, California passed a law AB 2109 that took effect on January 2014. The law required proof of counseling by a health professional in order to receive an NME. Policymakers in California and elsewhere seek to eliminate NMEs entirely (Krieger and Calefati, 2015; McGreevy, 2015). In June 2015, California Governor Jerry Brown signed into law Senate Bill 277 to eliminate NMEs and only permit medical exemptions for vaccine exclusion. This law will go into effect in 2016 (SB277, 2015). The examples of Mississippi and West Virginia suggest that the restricted access to exemptions will raise overall vaccination coverage. This strategy, however, may increase parents’ objections, as policies fail to incorporate the concerns parents raise.

Morality and Risk in Vaccine Literatures Vaccine advocates condemn vaccine resisters as irrational and selfish (Caplan et al, 2012; Perry, 2013; Hiltzik, 2014); few in the public sphere have framed these as forms of biomedical resistance or acknowledged the nuances of skeptics’ positions. This article expands on discussions of vaccine resisters in social science literatures (Streefland, 2001; Brownlie and Howson, 2005; Blume, 2006; Hobson-West, 2007, 2003; Leach and Fairhead, 2007; Senier, 2008; Kaufman, 2010; Kata, 2012; Kirkland, 2012; Brunson, 2013; Nyhan et al, 2014). The medical and scientific communities have invested significant resources to make vaccination an uncomplicated practice (Feudtner and Marcuse, 2001; Levi, 2007; Diekema, 2012, 2005; DeStefano et al, 2013). Pro-immunization professionals tend to advocate for vaccination without fully engaging parents’ reasons for hesitations (cf. Yaqub et al, 2014). Proponents do not fully engage with the objections that “are at once bodily, social, and political” (Leach and 6

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Fairhead, 2007, p. 10), requiring more than corrective information. Vaccine recipients are not just “users”, but also “consumers in markets … and citizens in states” (Rose and Blume, 2005, p. 107). Vaccinating one’s child requires admitting vulnerabilities and intimacies, both to the threat of disease and to the foreign substance of the vaccine serum. Parental refusals have been misinterpreted by policy decisions and biomedical research. Advocates focus on the populationlevel value of universal vaccination and critiquing fallacious claims about vaccine dangers. Both vaccination campaigns7 and refusers use fear to evoke a response. Those who question vaccine safety warn against potential toxins in vaccine ingredients. Healthy children, fully vaccinated, do not garner public attention. Exceptions fuel the vaccine critics. As vaccine promoters point out, most new parents are too young to remember the vaccine-preventable diseases such as measles. Thus, parents may conflate vaccines’ timing with unrelated developmental difficulties: children receive their MMR vaccines at an age that absence of developmental milestones like talking cause concern (Campion, 2002, p. 1474). At one SCIC meeting, the group discussed whether images of frightening consequences of vaccinepreventable diseases, such as children in iron lungs, ought to be deployed. My research suggests that drawing attention to the dangers of vaccine-preventable illnesses does not elicit vaccine acceptance from those who express skepticism. Messages designed to invoke fear of vaccine-preventable illnesses have been shown to increase vaccine refusals among already distrustful parents (Nyhan et al, 2014). As is often the case when risk is deployed to elicit behavior change, latent assumptions about what constitutes a threat and oversimplification of the decision process can produce resistances rather than acceptance. Health behavior change models (Bandura, 1994; Montaño et al, 1996) imply that risk ought to be objectively evaluated. These behavior change models neglect the socially mediated and informed meaning of risk and decision making. These strategies may miss the reasons individuals engage in behaviors that experts deem risky, and such models implicitly suggest that risk is a stable object (Lupton and Tulloch, 2002), even though epidemiologists and researchers would be quick to remind us that risk is not an absolute. Although vaccine advocates focus on disease risk and although parents invoke the inverse, vaccine safety risks and uncertainty, I deliberately leave risk debates as secondary here to focus on the content of resistances. I start with the assumption that “cultures of risk … [are] malleable, strategic, and creative … quite unlike the linear way risk factors are portrayed in biomedical literature” (Panter-Brick, 2014, p. 435). Risks are never absolute, are projections about time (Luhmann, 1993), and vary according to vantage point (Lupton and Tulloch, 2002). As with most other discourses of control, risk is cultural (Douglas and Wildavsky, 1983) and contingent: “what is considered as a risk in any particular societal context can hardly be determined from objective criteria” (Boholm, 2003, p. 163). The ambiguity latent in risk debates demonstrates the incommensurability of ongoing vaccine conversations. In US vaccine debates, we need to move beyond discussions of whether risk evaluations are subjective or objective for, “[a ]viable concept of risk must account for the amalgamation of objectivity and subjectivity” (Boholm, 2003, p. 165). Parents may tend toward highly subjective concerns, but immunization promoters overly value the existence of objective assessments. 7 Nyhan et al (2014) tested existing CDC materials; these narratives, emphasizing fear and danger, appear to have a negative effect on vaccine uptake. © 2015 Macmillan Publishers Ltd. 1745-8552

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The growing concerns about the whole cell pertussis vaccine in the 1970s and 80s provide a concrete example of how risk amalgamation is implicit in vaccine debates. Blume and Zanders (2006) note different countries made unique risk evaluations in deciding between the acellular and whole cell pertussis vaccines. These evaluations differed according to the type of scientific expert engaged in the problem: Dutch bacteriologists and biochemical technologists researching B. pertussis and responsible for DTP-P vaccine production have serious doubts as to whether, in the long term, acellular vaccine really is the answer. These doubts are based on arguments that neither epidemiologists nor public health physicians make. (Blume and Zanders, 2006, p. 1832) Scientific experts across disciplines do not make the same evaluations of risk, and it should be no surprise that parents have their own set of criteria. “There is no simple translation from [how] experts define and estimate risks in terms of a calculus of probability and effects to ‘situated risk’ … [which are] risks as they are actually understood and contextualized by people in social settings” (Boholm, 2003, p. 166). Existing literatures have attended to what constitutes risk for parents, but there has been remarkably little literature exploring the deliberate objections of vaccine refusers. Others have noted, “no amount of evidence is enough for some individuals” (Kaufman, 2010, p. 9), but this may reflect how advocates frame the discussion. When scientific and public health experts deploy evidence to dissuade people of health beliefs, they presume failure to respond to the evidence is a sign of ignorance, irrationality or lack of sophistication. “Different kinds of evidence count, such that cultural narratives of risk can trump epidemiological and medical evidence – the former having more explanatory power for predicting ‘why this happens to me, at this particular time’ ” (Panter-Brick, 2014, p. 434). Anxieties may demonstrate active engagement and are not necessarily evidence of ignorance. Resistance to technologies that confer broader social benefits, and therefore motivate governmental interventions, also reveal objections to the social policies as much as to the technology (Rose and Blume, 2005, p. 106). Parents’ skepticisms merit deeper consideration and to generate productive conversations about vaccines’ utility, we must explore parents’ skepticism further.

Productive Potential of Vaccine Anxieties If a successfully vaccinated child is now immune to preventable diseases, about whom we do not need to think (the absence of disease embodied), then the unvaccinated child requires a continuous re-commitment. Mothers at NaturalMoms described their refusal as one of constant defense. Dionne, in her early twenties, held her toddler daughter, Tate, in her arms and recalled being forced to sign a waiver at the nursery school to acknowledge she was a “negligent” parent. She said she felt “raped” when she eventually vaccinated Tate. Another mother said her pediatrician’s office told her they might not allow her to continue to bring her child to their office due to insurance concerns. In 2015, doctors’ practices where I live in Northern California are considering policies to exclude non-vaccinating families, a practice the literature suggests may not persuade parents to vaccinate (Yaqub et al, 2014). 8

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Vaccine skeptics perceive themselves, as one mother, Lucia, told a news reporter who attended the March 2008 mothers’ meeting, “[as] not irresponsible. We’re informed”.8 Constant affirmation of their decision requires commitment. The information these women may use to justify their choices may be highly flawed, but they are not made without reflection. “The inclusion of risk calculations … only makes sense if health promoters believe that individuals, in this case parents, make decisions in this way” (Hobson-West, 2003, p. 276). Claiming that ignorance is the cause for vaccine resistance misrepresents parental beliefs and implies lack of education; and, as a result, the public health attempts to change behavior in this group are somewhat misguided, alienating and even insulting the communities they seek to protect. Further, “[i]n terms of decision making, vaccination is not the oneoff decision it is sometimes portrayed as (e.g. National Consumer Council, 2002, p. 2), but is part of a process, with parents being asked to present their child at various points from 2 months onwards” (Hobson-West, 2003). Vaccine advocates do not sufficiently account for the deliberation involved in refusing to vaccinate. Vaccine skeptics’ repeated refusal of vaccines may be read as exemplars of medically engaged patients, even if not necessarily compliant ones. Thus, those who promote vaccines cannot assume that all parents who raise questions about vaccines must be strident opponents or unreceptive to potentially productive conversations about their choices. The data that most US children have received at least one vaccine highlight the need to better understand the multiplicity of vaccine uptake. There are “gradations of acceptance” (Streefland et al, 1999, p. 1709), rather than just the imagined “anti-vaxxers” (Kutner, 2015). Parents who question vaccines attend to ambiguities intrinsic to scientific inquiry. This reveals a fundamental tension in health-care knowledge dissemination: obscuring or downplaying possible risks, in order to reassure parents, may increase distrust among parents. The effects of Mnookin’s “impossibility” that refuses to engage directly with skeptics may reduce vaccine acceptance. Vaccine refusal also provides a concrete outlet for broad medical skepticism and pharmaceutical resistance. The new healthism frames us always already at risk (Dumit, 2012); there are few avenues to demonstrate the rejection of health risk discourse. The malleability or polysemic quality of risk has allowed health promoters to invoke it as a constantly moving target of aspirational goals, “illness was redefined by treatment as risk and health as risk reduction” (Dumit, 2012, p. 116). And yet, when those who present certain kinds of questions about the safety of widely used vaccines, the ‘engaged’ patient then transforms into a problem, not a productive interlocutor. This raises the question of what sorts of patients constitute ‘good patients’? Must they only be compliant rather than skeptics?9 Vaccine resistances assert claim to parental authority and to individualized knowledge. The 1998 Lancet article by Andrew Wakefield et al, associating the measles mumps rubella (MMR) vaccine with autism, remains one of immunization advocates’ origin myths of current

8 The NaturalMoms were featured on a Fox local affiliate’s nightly news show. The segment was titled “Vaccine Wars”, featuring Jenny McCarthy and her physician, Dr. Jay Gordon, as well as footage of the NaturalMoms’ meeting, and an in-depth interview with one mother, Lucia. 9 The question of the “good” or compliant patient and where the limits of compliance lie are beyond the scope of this article, but it is one that deserves further consideration in the discussion of vaccine critiques. How do we discern the difference between the hyper-vigilant patient who embraces medicalization and risk assessments through extensive testing and the parent who probes the safety of vaccines or asks, as Lydia, does, whether what is safe enough for FDA approval should be safe for her? © 2015 Macmillan Publishers Ltd. 1745-8552

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vaccine resistance. I call this a myth10 because as historians of vaccines have shown (Baker, 2003; Johnston, 2004; Blume, 2006; Colgrove, 2006), vaccine refusals are not new (Smith, 1997; Blume and Zanders, 2006). The scientific community contends that, when it comes to vaccines, we are in a “post-autism” period (Kirkland, 2012): the Wakefield autism-MMR association has no scientific evidence. US outbreaks of measles, currently at a 20-year high, continue to be attributed to the Wakefield study, a case study of 12 children, 9 of whom were given an autism diagnosis (Wakefield et al, 1998). In 2004, 10 of the original 12 authors retracted the findings. We wish to make it clear … no causal link was established between MMR vaccine and autism as the data were insufficient. However … such a link was raised and consequent events have had major implications for public health … now is the appropriate time that we should together formally retract … these findings … according to precedent. (Murch et al, 2004) In 2010, the Lancet formally retracted the Wakefield study. The original article now has every page stamped red, “Retracted.” Further, the British medical licensing bureau has stripped Wakefield of his license. All the interviews with the mothers preceded Wakefield’s formal discrediting, but occurred after the Lancet retraction. In immunization proponents’ active disavowal of Wakefield’s study, none acknowledges the study was published in one of the most well-respected medical journals. The silence obscures the potential fallibility of scientific sources and places the blame, perhaps fairly, on the duplicitous researcher. Still, no one has minimized the credibility of the Lancet. Instead, the parents who latched onto a doctor’s misuse of the scientific platform are ridiculed as ignorant. Past vaccine safety debates, in the 1970s and 1980s, related to the pertussis vaccine, forced officials to reflect on the tradeoffs of vaccine side effects, and led to the development of the acellular vaccine (Baker, 2003; Blume and Zanders, 2006). Although researchers have taken the autism concerns seriously, they cannot rule out the possibility that some children will have negative reactions to vaccines or to the ingredients in the vaccine adjuvants. These instances are quite rare relative to how many children receive vaccines, but ongoing parental anxiety quite reasonably reveals discomfort with scientific uncertainties. When officials close ranks against doubt, is it any surprise that parents find experts’ absolutism untrustworthy?

The Mommy Instinct US vaccination debates often invoke Jenny McCarthy. In 2008, McCarthy, known previously for her work as a model and actress, appeared on the very popular Oprah television show to promote her latest book on motherhood; this book, unlike three earlier books on pregnancy 10 Since the initial submission of this article and the 2015 measles outbreak, US media coverage is more nuanced (Grady, 2015). Measles in the United States has become an actual danger rather than just a potential threat. In addition, this recent outbreak has forced a more explicit consideration of why vaccine messages are not effective. Before the 2015 outbreak, there was little discussion of the limitations of vaccine promotion messages and in discussions of vaccine resistances, the emphasis was on parents’ negligence and ignorance. 10

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and motherhood, describes raising an autistic son, Evan. On Oprah, she attested to her maternal knowledge, her “mommy instinct”. She countered the medical establishment’s legitimacy with, “My science is named Evan”, as she described the non-medical treatments she used to help her son.11 McCarthy is a spokesperson for autism awareness movements, initially for Talk About Curing Autism until 2010 and more recently as president of Generation Rescue. Generation Rescue’s website identifies vaccines as a potential cause of autism (Generation Rescue, n.d.). McCarthy denies she is anti-vaccine and self-identifies as pro-vaccine-safety. On an April 2008 appearance on the Larry King Show on the CNN news network, she emphasized, “we’re anti-toxin, and we’re anti-schedule [pediatric vaccine schedule]”. She also admitted, during the same interview, that she believes the cumulative anecdotal evidence of parents whose children received vaccines suffices for scientific evidence. McCarthy draws on her intimate experience with a disabled child to claim authority, and one of her foundational arguments, that the number of vaccines has increased dramatically since the 1980s is indisputable. However, her ‘correlation is causation’ position, which claims that because we have an increase in pediatric vaccines at the same time that the autism rates have risen, is a troubling one. We cannot simply argue that an increase in diagnoses represents an overall increase in incidence. Rather, the numbers may reflect new diagnostic criteria, expanding the number of people who might be called autistic, when in the past they might have been uncategorized or treated as simply abnormal without medical intervention, or an overall increased awareness of the condition that might lead to more individuals receiving a diagnosis. In 2013, news outlets informed the public that a popular talk show, The View, would be adding McCarthy to its hosts (Perry, 2013). Proponents of vaccinations expressed anger that McCarthy’s questionable information would have a mass audience.12 A website (formerly) named after her, www.jennymccarthybodycount.com, offers a harsh critique, and attributes the toll of preventable deaths in the United States to her well-publicized13 questioning of vaccine safety.14 The pro-vaccination community emphasizes vaccine skeptics’ lack of scientific sophistication, further evidenced by trusting McCarthy. Courts and medical research allow for the possibility, however, that vaccines may cause harm to some children, in very rare cases (Harris, 2008).15 In the debate about the overall good of vaccines, advocates disregard potential harm; advocates then tell partial truths. Although studies continue to show that vaccines do not cause autism, my informants articulated concerns that are not exclusively about scientific evidence but also questions of medical imperatives. Why do the autism myth and fear of vaccine toxins persist, in spite of evidence to the contrary? And although

11 McCarthy cites dietary changes and chelation therapy for reducing Evan’s symptoms associated with autism. 12 McCarthy left The View in 2014, after a year on the show. 13 Jim Carrey, McCarthy’s former partner, publicly objected to the use of his film, “Horton Hears a Who”, to promote a vaccine campaign in New Mexico (Smoker, 2008; Parikh, 2012). 14 The Website’s name is now “Anti-Vaccine Body Count” (Bartholomaus, n.d.) The author, who only identifies as ‘Derek’ on his website, states no one individual is responsible for the anti-vaccine movement. If McCarthy were to change her position, others would fill her role. 15 The distinction between legal and medical decisions about vaccine safety merits its own paper. I am not arguing these are the same things. Offit (2008) published a New York Times op-ed after the Poling case suggesting that the courts have stepped out of their jurisdiction in current arbitration of vaccine harm. © 2015 Macmillan Publishers Ltd. 1745-8552

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there may be issues with US scientific literacy, parents like Lydia and Mary, two women with advanced degrees, embraced the model of scientific uncertainty, a foundational tenet of scientific principles. Mary pointed out: I know that the information from [scientific] studies is only as good as … if you have a control, if you have a placebo … so I know that you have to look into the size of the sample, how long the study was done … you can’t believe anything you hear … I look at the quality of the study. Who did the study? What the control was? How many people? Lydia concurred, “there is a disconnect in expectations. When you go to the doctor, you expect that whatever has been FDA approved is perfectly safe … But in this country, that is not the standard … it gets to go out until proven unsafe, and people don’t know that”. Mary and Lydia point out that scientific research is fallible and that the criteria for ‘safe enough’ cannot guarantee that a medical intervention will not cause harm. McCarthy, who stakes her demands on improved vaccine safety, is an important figure in these conversations. Rebecca told me: I think she [McCarthy] is awesome … she is very strong … she is very vocal about her opinions … I love that about her. She will confront some of these doctors and … get in their face about the issues … I think she says and does what a lot of us are thinking, but she just says it and does it. She is very bold. McCarthy stands up for what she, Rebecca, also believes. Rebecca does not question McCarthy’s authority to make claims about vaccines’ harm; Rebecca cared less about what McCarthy said, more impressed with how she stated it.. McCarthy’s data are inconsistent, and scientifically minded people do not find her persuasive. Her lack of credentials and her mommy-instinct claims appeal to parents who distrust medical interventions. McCarthy’s selfconfidence resonates with parents in contrast to the language of scientific uncertainty. Physicians assert the importance of immunization, usually focused on the population-level benefits, rather than an explicit benefit to the individual. Vaccine promotion messages proclaim vaccines as an uncomplicated good; there is no room for doubt. Vaccines’ successes have reduced the prevalence of vaccine-preventable diseases to the point at which most parents lack personal experience with the severity of preventable diseases (Diekema, 2005; Hilton et al, 2006). Parents may fear vaccine injury when vaccinepreventable illnesses seem unlikely (Black et al, 2012). Mothers who participated in this research explicitly acknowledged this calculus. Mary, a mother of four, explained her decisions to selectively vaccinate her children. “[W]e didn’t do the chickenpox. Like I had chickenpox. It was okay. She [the doctor] said, ‘well, kids can die from chickenpox’. I am like, you know, the odds are very slim. That is not the same as mumps, measles and rubella to me”. Like Mary, many selective vaccinators outright rejected the varicella vaccine. Rebecca, a mother of a 4-year old daughter, explained, “I am more afraid of vaccines than … of her actually contracting whatever it is that we are vaccinating against … I just don’t want to take the chance that she might be one of those that could develop allergies or … autism spectrum disorder because of the vaccines”. Rebecca’s concerns reflect many parents’ worries about medicine and scientific research as untrustworthy. 12

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Reviewing the literature on parental vaccine attitudes, Yaqub et al (2014, p. 7) note, “It is not vaccines per se that are mistrusted, rather it is the institutions (through which information about vaccines is delivered) that are mistrusted”. McCarthy publicly declares this mistrust, asking why the vaccine schedule is such an inflexible set of criteria, devoid of specificity, when parenting in the United States tends to emphasize children’s individualized needs. She affirms mothers’ unease with the institutionalization of immunizations. Mothers interpreted some of this standardization as a reflection of pharmaceutical companies’ incentives to generate new revenue streams. Mary alluded to the rotavirus vaccine16 as “excessive. I know … the drug companies are multi-million dollar, multi-billion dollar industries”. Anna, a 47-year old mother of 9-year old boy–girl twins, who ran her own holistic health practice, expressed regrets that she might have naïvely given her children their required vaccines. She explicitly referred to her “skepticism and anger at the whole pharmaceutical/doctor community”. Gardasil, the HPV vaccine, exemplifies reasonable distrust of profit motives. After a shortlived scandal in Texas and parents’ increasing concern about the rush to require a less tested vaccine (Gottlieb, forthcoming), Gardasil’s manufacturer, Merck, admitted to lobbying state legislatures to pass school requirement bills for Gardasil (Pollack and Saul, 2007). Pharmaceutical lobbying is not limited to vaccines, but other pharmaco-medical products do not result in state laws and federal policies standardizing widespread use. The pharmaceutical industry hardly has patients’ best interests in mind (Oldani, 2004; Carlat, 2007; Applbaum, 2009; Dumit, 2012). Health is secondary to profit motive. Thus, parents’ concerns about pharmaceutical profit motives in vaccine development and distrust of the increasing childhood vaccines are not unfounded. A session devoted to McCarthy at the 2008 CDC annual immunization meeting explored the perceived damage to vaccination rates McCarthy caused. Beginning the session, Natalie, who worked in the CDC Immunization Communications Department, presented before Dr Paul Offit. To introduce her talk, Natalie described herself “wearing [her] mommy hat”, rather than her “professional hat”: Just before … [my second son’s] 2-month birthday … I started to develop a knot in my stomach thinking in a few days I’d have to take him to a doctor. I knew the immunization schedule. I knew he was going to get 5 vaccines … [While sons napped] I put on Oprah … introducing her guest, Jenny McCarthy [audience groans] … I like Jenny McCarthy … When I was pregnant with my first son [I read her first book]. I watched as Ms. McCarthy told an emotional and very sad story … when she told Oprah that she learned most of what she knows about autism was from the internet, I knew where the conversation was going … Oprah asked her about the cause of her son’s autism that’s when she said it, “Vaccines”. By the time the show was over, I was feeling a mix of emotions. I was angry that Oprah didn’t have an actual expert on to talk about these issues, and I was disappointed that the CDC statement … sounded so flat and inappropriate, especially in comparison to Ms. McCarthy’s story. The presentation provided a maternal touch, the softer side of the CDC in the midst of a data-focused conference of vaccine promotion and uptake, a chance to prove the government 16 A vaccine developed by Offit. © 2015 Macmillan Publishers Ltd. 1745-8552

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agency is not just made up of population-oriented, data-driven bureaucrats. They watch Oprah, too. They have doubts. In a moment of resonant skepticism, Natalie acknowledged, “I know that truth changes as science advances … they don’t completely rule out the possibility that vaccines contributed to some of these kids’ conditions. We can’t say for sure”. She addressed scientific uncertainty without a wholesale rejection of vaccines. Formed in January 2013, a grassroots pro-vaccine group, Voices For Vaccines has adopted Natalie’s position of critical, yet compliant, mothers. Parent members (mostly mothers), who believe in vaccines, straddle the line between scientifically engaged and maternally intuitive; they bridge the space left between the pro-vaccine medical community and the parents who choose a spectrum of refusals. Their messages come across as more relevant than the bureaucrats’, although they also condemn refusers. After Natalie presented, Offit took the stage, insisting, “public health officials have listened to parents”. Citing research into the autism claims and the removal of thimerosal from many vaccines as scientific diligence, Offit framed parental reactions as purely emotional (read: irrational and evokes gendered stereotypes about mothers). In Atlanta, he equated them with strong religious beliefs held despite contrary evidence. Here we can see the broad response from authorities: when it comes to MMR and autism, epidemiologists and scientists have taken seriously the concerns that MMR vaccine might trigger the disorder. Yet the assertion that these questions have been resolved obscures the fact that not all vaccines elicit the same adverse reactions, nor are parents’ reactions solely about MMR. At an April 2008 SCIC meeting about the autism-vaccine debates, attendees interpreted parents’ reactions similarly, calling objections irrational and “emotional”. The presenter, Dr Herzog, suggested coalition members needed to “communicate risk-benefit” better. Immunization advocates should parse the difference between the “intellectual and the emotional” appeals. Intellectual, he argued, was “informational”, while the emotional reactions often came from those who might know someone with autism. Presenting these as mutually exclusive states, Herzog and Offit set up a false binary and show their messages’ lack of complexity. Rebuttal of parents’ anxieties forecloses the conversation, refusing sought-after engagement. Asked to join McCarthy on Oprah, Offit believed it would have been impossible for a vaccine expert to persuade after McCarthy’s emotional tale, which was “very hard to go up against … It would have been crazy to go on that show … to argue a personal, emotional story with statistics, which is hard to do”. His commentary cast Natalie’s presentation in a strategic light. If Dr Offit could not be a sufficient counter to a voice like McCarthy’s, perhaps Natalie’s “mommy hat” would provide a persuasive note. He conceded moments of uncertainty, “Scientists do get it wrong all the time … It’s fair for … McCarthy and others to raise the hypothesis, but once tested … we have to be able to move on”. Refusing to engage with McCarthy on her popular media turf begs the question of why someone as well-established as Offit would preclude this conversation. He asks parents to “move on”, yet offers no alternative. Move on to what? His response perpetuates vaccine skeptics’ perception that scientists do not think laypeople’s concerns worthy of their engagement. In April 2013, as a guest at the monthly Voices for Vaccines phone seminar, Offit admitted the legitimacy of questioning scientific findings, but with limits: Wakefield’s research was fraudulent. He conceded, “I think one should be skeptical of anything one puts into your body, or your child’s body … Like any medical product that has a positive effect, vaccines can have a negative effect”. Offit may find the persistence of vaccine safety anxieties to be a 14

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waste of time, but their intractability necessitates a new way to respond. Offit’s argument misses an important element of vaccine skepticism. Parents may not be asking the right questions, and organizations like Operation Rescue spread inaccurate information, but how might parents’ concerns be answered with opportunities to learn more about their children’s vaccines? Offit is a public figure of the pro-vaccination position, previously am elected member of the Advisory Committee on Immunization Practices to the CDC, which makes recommendations for vaccination standards (Centers for Disease Control, n.d.(a)); in 2014 he appeared on The Daily Show, and he writes books whose titles demonstrate how categorically he dismisses non-vaccinators, for example, Deadly Choices: How the AntiVaccine Movement Threatens Us All. Offit’s language is as dramatic as vaccine skeptics’ rhetorics. When those in positions of authority dismiss the public’s concerns, they perpetuate distrust instead of persuasion. Vaccines may be mostly safe, but some parents want more than the promise of mostly.

The Informed Parent Detractors attack McCarthy’s lack of expertise, which her followers deliberately embrace. McCarthy’s entitlement to ask questions about vaccine safety appeals to mothers who distrust medical authority. Lydia, who has a master’s degree in neurobiology and is married to a physics professor, expressed her frustration at the language of authority she encountered, beginning with her first pregnancy. We were looking for prenatal care and … having the science background [with] access to original papers, scientific papers, to see that oh, my gosh, this [ultrasound] procedure that is perfectly standard, it hasn’t been proven safe. It just hasn’t been disproven unsafe. And that just clicked a switch in me that said you have to be very active in all these decisions … what is the standard for the government and for the medical field is not … the standard for me. Lydia does not use her degree as a reason to expect her pediatricians to respond to her requests for alternative approaches to vaccinating, “I have never told him my [scientific] background … I would rather just say because I am a parent, this is my right and … open the door for other people who might not feel they have such a strong voice”. Lydia argued the reasons that a vaccine might be recommended do not necessarily reflect the best interest of the individual. “[T]o give a chickenpox vaccine because it saves $400 million a year in productivity, that is not a good reason in my book. So yes, the risk of getting chickenpox and being miserable for a week, I can deal with that”. Lydia does not believe chickenpox necessitates intervention, unlike some vaccinepreventable diseases. It is not the risk of the vaccine, per se, that Lydia distrusts, but the motivations for widespread dissemination of the vaccine. Public health programs and, therefore, vaccine promotions are not just about health, but also about moral and economic concerns (Feudtner and Marcuse, 2001; Robertson, 2001). Lydia’s framing suggests the problem is not with vaccine advocates’ message that it is beneficial to your child to be vaccinated, but with underlying assumptions of the message: the public at large will benefit, financially and medically, from your child being vaccinated. These assumptions ask parents to absorb interests (such as economic ones) that may have little © 2015 Macmillan Publishers Ltd. 1745-8552

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value to any individual parent. Her argument resonated with me years later, as I considered the chickenpox vaccine for my own child. During our interview, I was not yet a parent, but her skepticism of the larger social imperative struck me as one of the more nuanced observations of vaccine promotion and population-driven interventions. Lydia sees her risk-benefit analysis as more complex than comparing the vaccine’s benefits to potential harm from the vaccine or of chickenpox for her child; she evaluates the tradeoff as part of a larger set of moral and collective values. Seven years later, my daughter’s physician persuaded me that the chickenpox vaccine was important because of the immuno-compromised children my daughter’s immunity would protect. Although my Gardasil research has made me skeptical of some vaccine development rationales and forced me to think more critically about other vaccines, I believe fundamentally in using medicine to minimize preventable diseases. Lydia and I, though we both perceive ourselves entitled to question physicians’ authority, weighed the moral and social imperatives differently. Parenting makes Lydia mindful of being an engaged citizen, which she frames in terms of individual accountability, and thus invokes a libertarian notion of citizenship. The government and its agencies can neither be trusted nor, perhaps, should bear the responsibility of evaluating what Lydia would deem acceptable. Even though she does not believe she should vaccinate to benefit others as part of her philosophy of taking “responsibility for your own actions”, she wants to better understand the choices presented to her. For her sons, she chose three separate shots for traditionally combined vaccines, like the MMR vaccine, to identify any possible reactions to a specific vaccine. With the pertussis vaccine, she accepted that she had no choice but to accept the combination vaccine. She critiqued the reductionist data her providers offered. The information that they do give you is so simplistic, so kind of like chewed up and processed. Three sentences. The vaccination information sheets are so childlike … It is not for critical minds. It doesn’t pose any questions. They just try to appease you that everything is going to be okay. Indeed, during interviews with clinicians about how they persuade parents to accept the HPV vaccine, they focused on simplifying. One younger physician explained, “When I present it, I don’t talk about how people get the [HPV] virus. I don’t go there. I just say, ‘this is a vaccine that kills cancer’ ”. The vaccine does not in fact kill cancer, so the accuracy of information is already suspect, but more importantly, the reductionist messages echoed Lydia’s frustrations. Parents distrust clinicians’ claims that they provide a balanced analysis of vaccination choices. When asked explicitly whether she believed in the link between autism and vaccines, Lydia explained the ongoing debates17 made her cautious. “Even with all the research that I do … If you guys are not in agreement in the professional community, then I am going to go with the conservative answer … I am going to take my time”. Lydia freely admits that she is “thinking in terms of the individual”. She recognizes her physician has “to protect his 3000 patients as a whole”, and thus, “he is thinking in terms of the group … If I had 3000 kids to worry about then yeah, I would just give them all on the same schedule”. Most skeptics are not persuaded by the population-benefit argument. Mary asked, “If the government says we need to do A, B, 17 Our conversation occurred 2 years before The Lancet’s 2010 retraction and Wakefield’s loss of his medical license. 16

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C and D; everyone is not the same. Where are the individual needs in that?” Promotion messages attempt to translate population level knowledge directly onto individuals, but as Lydia’s and Mary’s resistances remind us, “a person is not the public writ small” (Leach and Fairhead, 2007, p. 78). This suggests better segmenting the audiences for vaccine promotion messages might prove fruitful. With newer vaccines, Lydia hesitates to give them to her children; she acknowledges the need for longitudinal data, “I understand, in order to have longitudinal studies, people have to actually have the vaccine. But you know, very selfishly, I am not willing to do that”. Mary also preferred vaccines “that have been around for 20–30 years … they don’t know the long-term side effects and that makes me anxious … like with the oral polio … they found out it was causing problems and then they took it away … I don’t want to be a guinea pig, and I don’t want my kids to be”. In Mary’s refusal to “be a guinea pig”, she accepts the uncertainty that not vaccinating presents, but it is also a form of autonomy. Rather than subjecting her family’s and her body to untrustworthy actors like pharmaceutical vaccine manufacturers, she assumes the responsibility of unvaccinated bodies. Mary’s and Lydia’s observations challenge the rhetoric that portrays the skeptics as ignorant and reflect Streefland et al’s observations about vaccine acceptance as a spectrum (1999). In contrast to the pro-vaccination message that advocates promulgate, there is nuance among those who refuse and those who accept; those positions are only two of many. The vaccine skeptics present a complicated positionality for immunization proponents with their ranges of tolerance for vaccinations. Not all parents are as reflective as Lydia or Mary, but with the rise of the “undervaccinated” (Glanz et al, 2013), Lydia exemplifies these desires to have medical providers and research scientists treat parental objections seriously. McCarthy represents these mothers, using her public platform to insist on the right to doubt. Although scientists and medical researchers do care about minimizing harm and maximizing benefits, which they demonstrate in their ongoing work on vaccine safety, the public emphasis on debunking misinformation misaligns their responses to parents’ concerns.

Conclusion Immunization proponents confront the challenge of framing: vaccination urgency is a population-level priority, with data focused on statistical information about population spread and contamination. Parents focus on their individual child and threats that seem imminent and tangible. Risk is a meaningless concept for any single person (Dumit, 2012), in spite of the frequency with which it is deployed to elicit health behaviors: “at a phenomenological level, how does a particular mathematical probability – such as a ‘one in seven’ lifetime probability … become interpreted as a personal ‘time bomb’ and lead to the adoption of certain health behaviours?” (Robertson, 2001, p. 304, italics mine). Further, public health immunization promotion focuses on dispelling misinformation rather than responding to the underlying concerns that the misinformation represents. Immunization advocates take parents’ resistances at face value, as though statistics were a sufficient response. Parents recognize that these facts are not stable, and they seek certainty, even when they know that certainty is rarely available. As Offit acknowledged, evidence cannot usually prove an intervention to be unfailingly safe; few things, if any, are without some potential harm, no matter how minuscule the odds. © 2015 Macmillan Publishers Ltd. 1745-8552

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Those who promote immunizations must better account for this ambiguity. By failing to directly engage with why scientific uncertainty may contribute to parents’ anxieties, researchers, public health advocates and physicians undermine their own positions. The autism concerns provided a medium for parental fears. Although the vaccine-autism association has been discredited, what is left behind is how those promoting vaccines continue to engage with parents’ responses. Like the Wizard of Oz, public health officials and providers ask parents to not peek behind the curtain, to not examine the details too closely. Rebecca distinguished different kinds of medical experts as an important part of her healthcare experiences, “I like … doctors who … look at it as a partnership. ‘I am here to help you make a choice. This is what I would recommend, but it is up to you’. I like that approach much better than just take what I have to give you and don’t ask questions”. Vaccines have had safety issues in the past, and it is unlikely they will ever be a perfect intervention. Confronting these concerns with respect might go far with skeptics who seek to have their voices acknowledged. There have always been vaccine skeptics, but their numbers continue to grow. This suggests that there are fundamental failures in vaccine promotion and education: medical experts talk about vaccines as a uniform intervention, without differentiating among potential reactions to any particular vaccine, and they minimize parental concerns. These two attitudes are related. They are practices of silencing objectors and obscuring nuance that might persuade parents that experts have evaluated risks and benefits. The responses to vaccine critics suggest that experts do not believe the general public can handle uncertainty, a core principle of scientific inquiry. Is this the public engagement with science that researchers really want to foster? Although I invoked Mnookin’s, 2012 comments about the pertussis vaccine at the beginning of this article, to show that the frustration vaccine advocates have with the vaccine skeptics often prevents productive conversation, I also want to acknowledge an earlier suggestion Mnookin proposed to address parental concerns. In 2011, he suggested that to counter parents’ anxieties, clinicians could begin by discussing vaccination in the context of prenatal appointments. As he aptly acknowledges about parents of new babies, they have the most legitimate reason to complain about the way they’re being treated. A recent survey found that 60 per cent of parents actively sought out information about vaccine safety before their children were vaccinated, but typically the first time the topic comes up with a medical professional is when there is a needle in their pediatrician’s hands (Mnookin, 2011). The current vaccine practices and information communication do not persuade parents, as I and others (Nyhan et al, 2014) have shown. Vaccine advocates must treat vaccination as part of the spectrum of parenting practices, even fit might mean accepting lower immunization rates. Rebecca called Jenny McCarthy “bold” for questioning authority. This sheds light on those who invoke McCarthy, whom even the CDC’s Natalie found compelling, as a model for their own resistances. Vaccine advocates might reflect on how McCarthy illuminates the general public’s anxieties. “Adventures in Autism”, a blog, interprets McCarthy’s quest as “a reexamination and easing off of the overly aggressive/untested CDC vaccine schedule, 18

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and stricter safety standards of individual vaccines” (Taylor, 2007). This portrayal of the CDC as “aggressive” and using an “untested” approach is debatable; however, McCarthy’s broader goal to question medical authority resonates with parents who do not feel they are heard in scientific debates. After the 2015 measles outbreak and proposed legislative restrictions on opting out, parents may grow increasingly intransigent. As publicly engaged scientists, the CDC and the FDA purport to have the public’s best interest in mind, and scientists do not operate in a vacuum. How might immunization advocates reframe vaccinating decisions? Could a more engaged dialog persuade critics to accept vaccination? Finally, although skeptics may continue to selectively vaccinate, might partial participation be preferable to complete rejection of vaccines? By reformulating their conversations about vaccines, immunization advocates may better realize their goals. Increasing public participation in scientific and medical practices, rather than shoring up the realm of expertise, ought to be the priority. In Spring 2014, an epidemiologist friend posted to Facebook a blog post that gleefully claimed that McCarthy recanted her son’s autism (Hollywood Life Staff, 2010). My friend did not contextualize the date of the alleged retraction, February 2010, and my friend’s social network jumped on McCarthy’s scientific ignorance. No one noted that the story was not recent. In response to the rapidly disseminated outdated story, McCarthy announced that she never recanted her son’s autism. Much like Wakefield’s study, McCarthy leaves trails of impact that endure. Debunking her scientific inaccuracy does little to persuade those who sympathize with McCarthy, and, if we do not address why these messages resonate, we can only react to the momentary claims, without considering the meanings of the underlying objections.

Acknowledgements I appreciate the anonymous reviewers for their time and insightful feedback. I wish to thank Abigail Baim-Lance, William Muraskin, and Lauren Heidbrink for reading and commenting on earlier versions of this article. Hadley Leach and Richard Gottlieb have contributed useful editorial comments. I want to acknowledge all the research participants, especially those who shared their families’ lives and intimate details with me during fieldwork. This research was funded by the Wenner-Gren Foundation grant #7754 and the National Science Foundation grant # 0724616. The author declares no conflict of interest.

About the Author Samantha D. Gottlieb is a Visiting Scholar at University California, Berkeley, and teaches at California State University, East Bay. Her work has focused on public health discourses of risk and popular acceptance of new health technologies, most recently focusing on the human papillomavirus (HPV) vaccine. Her current project focuses on open source data advocacy among type 1 diabetics. © 2015 Macmillan Publishers Ltd. 1745-8552

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