Broadening Ethnographic Following: From Following Conflicts to Following Agreements and Silences in Vaccination Debates

ABSTRACT

George Marcus’s methodology for multi-sited ethnography is widely discussed and applied in anthropology and the strategy of ‘following the conflict’ has been a fruitful approach to studying controversies and conflicts. Drawing on my shifting methodology in the initial stages of a digital ethnography project on vaccination-related online community forums, I explore ‘the war’ on vaccines using a broadened strategy that includes following agreements and silences within the controversy. By examining the debate in conjunction with medical anthropology research, I discuss how both vaccine-cautious and vaccine-confident forum members challenge conventional debate divisions, such as scientific–unscientific, evidential–anecdotal and genetic–environmental, while still adhering to medico-scientific discourses as zones of agreement. Whereas an agreement-oriented methodology contributes to research on liminal zones and reconfigured forms of bio-citizenship and literacy, the strategy of ‘following silences’ highlights the limits to liminality in a debate underpinned by adultism that silences the views of young people.

KEYWORDS:

• Adultism
• agreements
• following
• bio-citizenship
• vaccination

Introduction

Anthropologists are, in fact, particularly good at highlighting continuities in places where other observers are more likely to expect or identify ruptures. (Archambault 2017: 5)

Since publication of George Marcus article ‘Ethnography in/of the World System: The Emergence of Multi-Sited Ethnography’ (1995), anthropologists have been able to choose from a plethora hands-on ethnographic strategies and approaches to the field. Marcus’s article reconsidered our approach to the ‘field’ as a physically bounded place; in particular, the idea of considering the field as consisting of multiple sites has been a focus of debate and in many cases positively embraced (Dodworth 2021; Hannerz 2003; Hine 2000; Vertovec 1999). However, Marcus’s outline of diverse strategies of following, has been less discussed. In addition to addressing what many would see as the core of ethnography, the strategy of following, Marcus proposes multiple ways of doing so that are in alignment with the complex world ethnographers study. ‘Follow the people’, ‘follow the thing’, ‘follow the metaphor’, ‘follow the plot, story, or allegory’, ‘follow the life or biography’, and finally, ‘follow the conflict’ are all strategies that showcase multiple ways in which anthropologists can choose to conduct an ethnographic multi-sited study (Marcus 1995: 106–110).

This essay provides a rethinking and broadening of the last-mentioned of these strategies – ‘following the conflict’ and following ‘the parties to conflict’ (Marcus 1995: 110). It draws on a digital ethnography research project focusing on vaccine confidence and vaccine caution and methodological shifts documented in its early stages. I furthermore examine the online vaccine debate in conjunction with contributions from medical anthropology and other relevant studies, including research on rearticulations of citizenship and biopolitics as a central dimension of these rearticulations.

The biopolitics approach has been widely used in studies of health activism. The research foregrounds how biopower − through the management of life as such − productively generates scientific knowledges, public debates, citizen groups and new forms of citizenship (e.g. Foucault 1978; Heath et al. 2004; Rose & Novas 2005). For instance, Nikolas Rose and Carlos Novas use the concept of ‘biological citizenship’, a term borrowed from Adriana Petryna (hereafter bio-citizenship), when referring to a form of citizenship emerging in the light of biotechnology, biomedicine, and genomics (Rose & Novas 2005: 439–441). A common denominator for such forms of body- and health-based citizenship is that the body, health–disease and medical diagnoses play a fundamental role in wide variety of claims for citizenship rights.

Employing a poststructuralist approach, I consider both normative ideas and the resistances challenging them – in this case ‘pro-vaccination’ and those rendered ‘anti-vaccination’ – as always already confined to biopower and bio-citizenship (Foucault 1979, 1980; Heath et al. 2004: 153–157; Rose & Novas 2005). By identifying liminal zones (Turner 1969) and continuities, instead of ruptures, divisions and oppositions complying with public discourses and ‘biomedical hegemony’ (Barry 2006; Brunson & Sobo 2017; Casper & Koenig 1996; Good 1994; Nichter & Nichter 1996: 328), this mode of following both sets the debate within a broader context of health activism and it provides a more nuanced understanding of the stances in ‘the vaccine war’.¹

However, the essay does not argue against ‘following the conflict’, but rather shows that the strategy can be expanded upon to make a valuable contribution to the extensive field of medical anthropology research. I consider it an anthropological strategy characterised ‘less by a perfection of consensus than by a refinement of debate’ (Geertz 1973: 29). In the sections below, after a brief research review, I discuss how following agreements within the conflict can be seen as in alignment with poststructural ethnography seeking to move beyond binary oppositions, embracing ambivalent positionality and multiple selves of the ethnographer in a multi-sited field (Britzman 1995; Choi 2006; Dodworth 2021; Marcus 1995). I then go on to discuss how both vaccine-confident and vaccine-cautious members draw on and redraw established debate divisions such as scientific–unscientific, evidential–anecdotal, traditional–alternative, genetic–environmental and collective–individual. Finally, I address how to make sense of the ‘silences’ as another form of agreement in the vaccination debate and in relation to the bodies figuring in, but also the adult bodies running, the vaccination debate.

Vaccination Debates in Pre- and Post-Covid-19

Vaccination has been controversial ever since the creation of the smallpox vaccine, usually dated to the 1790s with Edward Jenner’s scientific inoculation experiments (for an overview, see Brunson & Sobo 2017; Cafiero et al. 2021; Riedel 2005). Research has long discussed how vaccination anxieties are sociopolitically situated and has shed light on contextual conflicts and political anxieties. Conflicts and tensions have been discussed, for instance, in relation to ethnic and religious groups, in the context of colonial histories or critical responses to state policing of the poor and marginalised (Adams & Salter 2007; Cafiero et al. 2021; Nichter 1996). Svea Closser et al. (2016) also discuss disparities in funding and how a mismatch between funding for vaccination campaigns compared to funding for general health services for basic health provision can generate mistrust of vaccination programmes.

Concerns over vaccines in the United States and Europe today are most prominent in relation to vaccines against preventable so-called ‘childhood diseases’. Such concerns may include vaccine safety and (un)known vaccine side effects, including the controversial debate about potential risks of neurodevelopmental harm to children (Brunson & Sobo 2017; Conis 2014; Deiner et al. 2019; Kaufman 2010; Numerato et al. 2019; Reich 2014, 2020a). A highly controversial scientific article by Andrew Wakefield and colleagues published in the medical scientific journal The Lancet in 1998, though later retracted, discussed such associations. For some, it became a confirmation of the idea that vaccinations might have something to do with the autism spectrum (Conis 2014). Furthermore, these anxieties partly overlap with other concurring developments. As Sharon R. Kaufman stresses (2010), it is not only the apparent number of children with autism that has risen, but also the number of vaccinations, which in the United States has clearly increased. Writing about the childhood immunisation programme during the period between 1967 and 2006, Kaufman shows how five different vaccines in 1967 against seven diseases increased to additional vaccines, which in 2023 protected against fifteen diseases, including Covid-19 (CDC 2023; see also Conis 2014; Kaufman 2010). As the medical historian Elena Conis (2014) writes, diseases once considered normal parts of childhood – such as mumps and chicken pox – became top health priorities in the U.S. but only after they became vaccine-preventable diseases, that is, after vaccines against them were licensed for use.

The debate over vaccinations is not taking place solely among vaccine-cautious parents. Vaccinations have become an increasingly hot debate following several outbreaks of vaccine-preventable diseases in various parts of the world, such as the resurgence of measles outbreaks during 2018–2019, including in the U.S. (in 2019) and other high-income countries (Patel et al. 2020; see also Brunson & Sobo 2017; Deiner et al. 2019; Kasstan 2021). Pointing to decreased vaccination rates, in 2019 WHO cited ‘vaccine hesitancy’ as one of the top ten threats to public health on a global scale (WHO 2019, 2020; see also Dudley et al. 2020; Kasstan 2021). In times of the coronavirus pandemic and Covid-19 vaccines, controversial criticisms of and ‘wars’ over vaccines have gained renewed attention.

While a vast amount of contemporary research reproduces the idea of an ongoing conflict between two stances, anthropologists have for decades proposed alternative viewpoints by shedding light on the heterogeneity of ‘vaccine caution’ (Sobo 2015, 2016: 348; see also Brunson & Sobo 2017; Deml et al. 2019; Kaufman 2010; Nichter 1996; Ward 2016). In addition, attention is given to the contextual characteristics and nuances of vaccine proponents and vaccine acceptance (see Conis 2014; Dudley et al. 2020; Nichter 1996; Numerato et al. 2019; Martin 2022; Vanderslott 2019; Vochocová et al. 2022). Scholarship on the topic has proposed using a range of terms to ‘de-polarise’ the debate. Some scholars discuss varieties of hesitancy, ranging from relatively radical (anti-)activism to a relative cautious position, suggesting that attitudes to vaccinations be conceptualised as a continuum rather than clear-cut oppositional stances (Dudley et al. 2020; Martin 2022). Studying public framings of childhood vaccination, Emily K. Brunson and Elisa J. Sobo emphasise the need to move beyond the framework of polarisation and even spectrums, and instead conceptualise vaccination perceptions as ‘diverse and dynamic multidimensional assemblages’ (2017: 38). In a similar vein Samatha Vanderslott (2019) draws attention to the heterogeneity of pro-vaccine activism by distinguishing between pro-science and parent-based pro-vaccine but issue-oriented activism.

Elisa J. Sobo (2016), for example, has given more nuanced conceptualisations of ‘vaccine refusal’ and questions the association with resistance or an anti-stance by showing the many factors that influence vaccination decision-making. Vaccine hesitancy can range from a critique of biomedicine, the political economy and the conduct of pharmaceutical corporations to embracement of distinct medical philosophies, expression of care and identification with a social community. The latter suggests that vaccine caution should not be seen solely as an ‘anti-’ position, but may also be an act of affiliation, rather than dissidence, in situations where it reflects belonging and identification with a social network (Sobo 2016). Furthermore, such conditions for membership exist on both sides of the debate (Sobo 2016; Wentzell & Racila 2022). In addition, diversity among those who are cautious towards vaccinations – including those ‘diverse collective[s]’ that are often associated with vaccine caution in the public discourse, such as ethnic or religious minority groups – is yet another reason to question a polarised debate that tends to oversimply, homogenising refusing persons as one and the same group (Conis 2014; Kasstan 2021: 413; Sobo 2016).

Similarly, oversimplifications may result from linking the vaccination debate to differences between conservative and progressive movements or between leftist and right-wing ideologies. For example, Conis (2014) illustrates this point by demonstrating how, in the United States, since the 1960s and 1970s, vaccine-caution rhetoric has been influenced by a variety of movements, including feminist and women’s health, environmental, and patient-rights movements, as well as more conservative child protection and parental-rights movements.

Despite all these complexities that challenge precise delineations of the field (e.g. Hannerz 2003; Marcus 1995), it is still common to make explicit links to a conflicting terrain. The terminology used in the public discourse denotes clear (and clear-cut) associations with a conflict, because it presupposes two oppositional parties – those who oppose vaccinations (anti-vaccination or the so-called ‘anti-vaxxers’) and, less explicitly, those in favour (pro-vaccination or ‘pro-vaxxers’). Once the area is seen in these terms – that is, as a controversy with clear stances – Marcus’s strategy of ‘following the conflict’ seems applicable to studying the vaccination debate.

Bearing the above in mind, the ‘following the conflict’ strategy was my starting point in what is still an ongoing digital ethnography about vaccination-related online forums on Facebook. Initially, the forums I followed were mainly addressing child immunisations, but from December 2020 (when the ethnographic following began), they gradually moved more to discussing Covid-19 vaccinations. This essay focuses on some initial reflections and shifts, which have developed into a new methodological strategy and a response to the scholarly debates mentioned above.

From Following Conflict to Following Agreements and Silences

Online community forum discussions of vaccines and vaccination debates more generally are, as with the contexts described by Marcus, multi-sited and trans-local rather than place bound (e.g. Hannerz 2003; Marcus 1995). Thus, the debates take place in the virtual and interconnected world of social media, in the mass media, but also in the streets (especially in protest contexts), courts, civic engagements and lobbying, scientific communities as well as in everyday life decision-making and in consultation with peers and health professionals (Cafiero et al. 2021; Kaufman 2010; Martin 2022; Vanderslott 2019). Still, vaccination debates are often interlinked with infodemics, discussed in connection with the increased use of information technologies and social media platforms to receive and spread health-related information (Deiner et al. 2019; WHO 2022). There is, however, no obvious interconnection between social media and attitudes to vaccinations. The internet offers many forums with anti-vaccination sentiments, but not using the internet can inhibit access to health information (Kasstan 2021). This is not to say that vaccination debates do not flourish on the internet. Like many other health activisms and debates, the vaccination-related forums that I started to follow in 2020 have a presence on public and private social media platforms (Deiner et al. 2019; Heath et al. 2004; Lupton 2012; Numerato et al. 2019; Vanderslott 2019).

To get an overview, I initially searched with the term ‘vaccine’ to find groups and pages on Facebook and other social media platforms. This search was limited to groups and pages in English.² Already at this early stage, I encountered Facebook administrators’ warnings about the accuracy of health information, giving the impression I was about to enter a field that was controversial and risky. In addition, the names of the groups and the pages, as well as the content of the posts, soon exposed me to vaccine-positive arguments and arguments questioning vaccines – mainly because commentators tend to write in (critical) response to one another. In this way, I was able to ‘follow the conflict’ (Marcus 1995: 110).

In some cases, an application to join a group meant that I had to fill in questionnaires which forced me to reflect on my own stance towards vaccinations. A multi-sited field may require what Kathy Dodworth (2021) calls a ‘multipositionality’, which in my own case enabled entry. I presented myself as someone who is neither against vaccines nor against people who are negative towards vaccinations. However, my decision to enter the field using my own name with an affiliation to an academic health and welfare institution may have limited my access to certain community forums that are critical of research and/or medical science. Another issue pertaining to access was my reason for joining the forums. I was searching for groups in which I could participate as a curious researcher rather than a parent or a professional, a person with a specific stance, in a specific geographical area, or a person interested in a specific vaccine. This delineated ‘the field’ to forums and posts that addressed diverse viewpoints. From these groups, I also followed hyperlinks redirecting me to public sites, mostly to scientific journals and published news articles. To gain a better overview of the polemics, I followed hashtags #vaccine and #vax on Twitter, as well as accounts and posts relating to vaccination on Reddit and YouTube. Such interactions as there were between differing positions on vaccination was mostly in the Facebook groups, on which this article is mainly based. Those groups also hosted longer posts, which not only discussed what right and wrong views on vaccinations were, but hosted advice and produced and circulated information between members (see also Lupton 2012; Reich 2020b).

This article is primarily based on intensive following of two online community forums on Facebook. The forums named³ here ‘Inclusive Vaccine Debate’ and ‘Vaccine Information’ is explicitly open to both pro- and anti-vaxxers and to those who refuse such labels, though pro-vax posts were in the majority. The third included forum, referred to here as ‘Vaccine Safety Forum’, was only followed in the early phase of the fieldwork but is included because it was oriented more towards sceptical debate about vaccinations, though its policy made it open to people with vaccine-positive views, as was evident in the interactions. Confidentiality is a challenge in internet research which makes possible studies of groups with many members who may not be aware that their posts have been used for research purposes and as background data (Hård af Segerstad 2021; Hine 2000). The quotes used in the essay are not linked to any identifiable account and they have been shortened or modified to make identification more difficult.

The intertwining of methodology and ethics is often discussed in ethnographic research, for instance in the context of studies of one’s own community, especially when the focus is on sensitive issues (Choi 2006; Hård af Segerstad 2021). However, anthropologists have expanded such debates by shifting focus from the question of engagement as intensity and whether to observe neutrally or with investment in one’s own communities, to questions of how, with our own histories and positionalities, we can understand the engagement of the ‘other’ (Edelman 2001; Pasieka 2017). Agnieszka Pasieka (2017) calls for a self-reflective approach whereby the researchers scrutinise where their own sympathies lie when studying ‘the other’ with whom they may disagree. In the context of the vaccination debate, the issue is not merely whether one disagrees with online forum members; it is just as important to consider the alternative and ask reflective questions – such as whether and how, by positioning vaccine-cautious members as the ‘others’, one is complying unreflectively with public health discourses and biomedical hegemony (Barry 2006; Brunson & Sobo 2017; Casper & Koenig 1996; Good 1994). To avoid moralising and patronising ‘the anti-vax other’, I tried to find affinities with vaccine-cautious members, and I reflected on possible disagreements between myself and members who were generally positive about vaccinations. This provided a focus shift and an opening to finding agreements between vaccine-cautious and vaccine-confident members, in addition to the disagreements between what were commonly depicted as opposing ‘sides’. Subsequently, Marcus’s following the conflict strategy thus over the course of time became dovetailed with my own as I became more interested in following the areas of agreement within the conflict, which made divisions and conflicting issues blurry and less clear-cut. In this way, I was also able to capture what was taken for granted on both sides of the debate: the silences.

Internet researchers often find themselves lurking rather than interacting (Hård af Segerstad 2021; Hine 2000; Tiidenberg 2020). This study was no exception, and the issue was most acute at the beginning of my online fieldwork: each time I interacted, I felt closely surveilled because ‘new member’ was attached to my name. This made me pose my questions carefully to avoid offending someone and being excluded. While this did not lead to the kind of polemics I was initially looking for, my ‘culturally incongruent’ questions for these debates (Choi 2006: 446) – made me curious to explore the absence of responses. My questions were inspired by research on other activism, including that of children and young people. Subsequently, my own positionality as a researcher and my knowledge on other fields and scholarly debates such as critical childhood and youth studies helped me to identify ‘silences’, that is, unaddressed issues.

Below, I discuss medico-scientific discourses that were identified when using the proposed strategy of following. Binary oppositions such as scientific–unscientific, research evidence–anecdotal evidence, medical–anti-medical or traditional–alternative medicine and collective–individual are common in public discourses on vaccinations as well as in research on vaccine-related views and debates (for instance, see Barry 2006; Lupton 2012; Silverman & Wiley 2017; Sobo 2016). Thinking beyond and rethinking these binaries comprised my main strategy in identifying liminal zones (Britzman 1995; Lather 2004), or zones of agreement and interaction among members in the online forums. New meanings ascribed to these concepts and redrawn lines between them are referred to as reconfigurations of citizenship and knowledge/literacy.

Medico-Scientific Discourses as Zones of Agreement

Vaccines, according to Florian Cafiero et al. (2021) , symbolise ‘scientific progress’. Hence, it is no surprise that, as Jennifer Reich notes (2020b), ‘vaccine refusal’ is generally associated with the well-known and disputed stance of contesting medical expertise and mainstream medical scientific knowledge. Dichotomies and antitheses do come up occasionally in vaccination forums, but in distinct circumstances, when vaccine-confident members are ridiculing ‘anti-vaxxers’. Vaccine-cautious people are commonly labelled as ‘anti-science’, ‘unscientific’ and ‘conspiracy theorists’, all of which were common labels in some of the interactions studied. A similar phenomenon has been documented by Lenka Vochocová et al. (2022), who discuss how confrontational online communication tends to reinforce polarisation between discussants representing vaccine confidence and vaccine caution.

However, anti-medical and unscientific stances in the forums studied tend to be rather diffuse, as group members do not speak from such positions. Instead, medico-scientific discourses are articulated by members regardless of their stance on vaccinations, as these discourses structure the interactions between vaccine-confident and vaccine-cautious members.

Blurring the Scientific–Unscientific

A common strategy in response to sceptics among members who are positive towards vaccines is to advise them to consult their paediatrician rather than social media. At the same time, the forums allow members to comment as experts based on their clinical experience or educational backgrounds in fields like biology, medicine, nursing, or epidemiology. Other members are seeking advice, support, sometimes easily understood information. This diversity means that one need not be an expert in the field to ask questions or provide answers. However, all comments are not considered equally valid. A common tactic among members who are positive to vaccines in their response to those who are more sceptical is to posing probing questions, such as ‘Do you have a citation for that?’ and ‘What are your credentials for giving information on vaccines?’. By using such comments and queries, vaccine-confident members give the impression that they are literate in medico-scientific terms and are capable of assessing relevant credentials, the scientific and the unscientific. A similar pattern occurs when vaccine-cautious members question whether credentials are required to share links to studies. Sharing does not require scientific expertise, but it does presuppose that the members who share, as well as those who read, have a basic understanding of scientific findings. Such articulations of medico-scientific literacy blur the line between laypeople and scientific and medical experts (e.g. Heath et al. 2004: 152; Kaufman 2010; Lupton 2012; Numerato et al. 2019; Rose & Novas 2005).

Forum members may also blur the line between science and non-science when they comment on posts that ask for easy-to-understand information. Even though accusations are forthcoming when vaccine-cautious members link to YouTube and other sources deemed untrustworthy, vaccine-positive members also sometimes refer to sources that are not scientific peer-reviewed articles. They too sometimes cite YouTube, or the governmental agency Centers for Disease Control and Prevention (CDC), podcasts, vaccine-positive websites and blogs or newspaper articles. Scientific studies are frequently linked and discussed nevertheless. A heavy reliance on ‘peer-reviewed’ medical science makes itself present and members in the forums are equally eager to present their arguments as based on science or they ask other members for ‘hard facts’. For instance, vaccine-positive members link to PubMed (life sciences and biomedicine) studies like ‘Vaccinated versus unvaccinated: how they fare in the first five years of life’. Vaccine-cautious members, on the other hand, link to their sources in counterargument to vaccine-confident members who discredit the link between vaccinations and autism. In one post, a member cites the infamous study by Andrew Wakefield and colleagues.

[…] This is Dr. Wakefield’s study that was published then retracted from the Lancet. He was one of thirteen authors. [The researchers] do not claim the vaccine caused autism. They simply convey what the parents reported, which was that both autism and bowel troubles began directly after receiving the vaccine […] (Vaccine Safety Forum)

When the Wakefield article was published in Lancet (Wakefield et al. 1998), for many parents this confirmed a relationship between autism and vaccines. Wakefield and colleagues discussed the relationship between regressive and gastrointestinal developmental disorders and vaccinations, more specifically the MMR vaccine (a vaccination combination against measles, mumps and rubella). The study was formally retracted, but years passed until this happened in 2004. By referring to the study, the vaccine-caution member posts content within a medico-scientific discourse, that is, by citing a well-known scientific article, albeit now discredited. Vaccine caution thus cannot be reduced to a direct challenge to mainstream medicine or medical science. Rather, forum members embrace medico-scientific literacy and argumentation within a medico-scientific discourse. However, the medico-scientific discourse here is broadened to encompass the work of scientists regardless of the present status of their work.

Even though ‘the Wakefield study’ is now considered to have been based on falsified evidence, it succeeded in generating ‘generalized fears about the MMR vaccine’ and is still cited by vaccine-cautious parents and vaccination activists (Deiner et al. 2019; Kaufman 2010: 21; Numerato et al. 2019). The fear of regressive developmental disorders is apparent more than 20 years later:

My anxiety about it is crazy on both sides but regressions and injury are one of my biggest fears. (Inclusive Vaccine Debate)

In the two forums that are primarily in focus of the study, members do not cite Wakefield and colleagues. Instead, many discuss Wakefield himself as a ‘disgraced’ former scientist or doctor who has lost his medical license. For instance, ‘Andrew Wakefield is back and thinks COVID-19 mRNA vaccines change DNA’, is reposted by a member from a pro-vaccine blog. Another member links to an article ‘MMR vaccine rates are lagging amid a rise in measles cases: Experts blame a discredited study’. A member reposts a blog post ‘Do Vaccines Cause Autism?’ from a ‘medically reviewed’ website. A scientific study that disputes the link between autism and vaccines – ‘Measles, Mumps, Rubella Vaccination and Autism: A Nationwide Cohort Study’ – is shared by several vaccine-positive forum members. Thus, the idea as well as ‘the Wakefield study’ – referred to as ‘discredited’ and ‘debunked – are still circulating as an implicit or explicit point of reference, even though The Lancet retracted the study.

This focus on information and science suggests that both vaccine-cautious and vaccine-positive members embody what Deborah Lupton calls ‘the archetypical empowered health “consumer”’ who, in the struggle for control and participation, seeks to gain medico-scientific knowledge in their own right (2012: 114). A response from a vaccine-positive member to one who is cautious can be used to demonstrate this:

I feel you mama, I was in the same boat and was very frustrated as I felt like I got all fear on the anti side and judgement on the pro side. I complied a huge document of research articles that answered my concerns about vaccines and proved that they were safe. Overall, I found that there was a much larger number of studies (and much higher quality studies from my limited research experience that supported vaccines were safe) and that the incidence of problems like asthma are the same if not lower in vaccinated populations. (Vaccine Information)

It is precisely this assemblage – the idea of the critical, scientifically- and health-literate citizen-consumer – that underpins citizens’ claim to make informed decisions based on compilations of research articles, to use science and other sources to contest or confirm vaccination stances, but also to challenge expert knowledge and demand to be informed about vaccine ingredients.

Seeking and Destabilising Evidence

One way to discern facts from false information is to draw on ‘research evidence’ – a term currently appearing across different fields and contexts, but which originated in the medical sciences and ideas about evidence-based medicine and knowledge (Barry 2006; Knezevic 2021). The idea is that research provides evidence of effective treatments, or of unproven effects where an investigation has been undertaken but effects are not proven.

In the forums, scientific evidence was discussed – and destabilised in several ways. For vaccine-positive forum members, the statement that cannot be supported by scientific evidence appears as false. However, for some vaccine-cautions members, there are ‘two sides’, and some express concern that science from both sides may contradict each other. In addition, for some vaccine-cautious members, the discourse of evidence leaves open for interpretation all areas that yet remain to be investigated. In the absence of research, potential unknowns become easier to imagine (see also Brunson & Sobo 2017). Vaccine-cautious forum members draw on this discourse of evidence, for instance, in relation to the newly released Covid-19 vaccinations. As Lisa J Hardy (2020) writes, the Covid-19 virus has been perceived as a mystery beyond control, prediction and knowledge. Such a context feeds the growth of conspiracy theories, and across political divisions. In the debates under study, mystification is related to Covid-19 vaccines, whose long-term risks, it is assumed, we are not yet aware of. It is assumed that the long-term risks lie ahead of us in time and cannot be scientifically established, but also that science and approval of vaccinations (need to) take time. Thus, until scientifically proven to be a non-risk, risk remains a possibility, even though it may be minimal.

Therefore, the vaccine debate may in some cases be a debate about risks-versus-benefits. In such cases, vaccine-confident members discuss how benefits outweigh the risks, while vaccine-cautious members might bring up reports of ‘vaccine injury’. The arguments of those latter are in line with the modern practices of citizens drawing on established diagnoses and ‘vital’ rights and bodily injuries to seek recognition and compensation from the state. Anthropologists have discussed the profound changes in the understanding of citizenship in which the body has come to play a central role in rights claims and in recognitions of violations (Heath et al. 2004; Lupton 2012; Rose & Novas 2005; Sassen 2003). Such claims to bio-citizenship inform the forums when, for example, vaccine-cautions members mention Vaccine Adverse Event Reporting System (VAERS) and refer to Vaccine Injury Compensation Data as ‘proof’ of injuries leading to compensations (VAERS 2024; VICP 2024). A common counterargument among vaccine-confident members is that the alleged injuries are not caused by vaccination, usually followed by a reference to Vaccine Injury Compensation Program (VICP) stating:

Approximately 60% of all compensation awarded by the VICP comes as result of a negotiated settlement between the parties in which HHS has not concluded, based upon review of the evidence, that the alleged vaccine(s) caused the alleged injury. (VICP 2024)

Furthermore, a vaccine may be questioned not only due to possible safety risks but also due to perceived lack of effectiveness, for example of Covid-19 vaccines. Some members dispute vaccine effectiveness by highlighting how vaccines no longer are a guarantee to protection from disease and how vaccinated people still may become sick. Thus, the ways in which the discourse of evidence is drawn upon in the debate can both undermine vaccine confidence and raise a certain degree of doubt about vaccines. However, members did not always share views on where evidence is lacking and on how the lack of evidence is to be interpreted in the first place yet expressed these diverse meanings within a discourse of evidence, that is, underpinned by the idea that scientific proof is an ontological fact.

The current study parallels what Lisa Lindén (2020) also noticed in her study of a human papilloma virus (HPV) vaccination campaign, namely that those who are against vaccines do not always draw on personal experience. However, the debate is also marked by shifts in focus from scientific evidence to what is commonly called in the forums as ‘anecdotal evidence’. In the forums, some members discuss childhood experiences and vaccinations as well as experiences of family members or friends taking a shot or the witnessed consequences of them not taking it. While usually being ascribed to vaccine caution, ‘anecdotal evidence’ is also randomly drawn on by vaccine-positive members who may both ask for and give advice based on anecdotal evidence. Such inquiries are articulated in relation to the so-called childhood vaccines and, as seen below, Covid-19 boosters.

If you recently received the new booster, would you kindly reply with where you received it? Pfizer or Moderna? (Vaccine Information)

Posts may also be introduced by giving information about an upcoming vaccination and asking about possible side effects that others have experienced. Thus, in these cases, both scientific and anecdotal evidence figure in the debate, and proponents of vaccination draw on both when they encourage vaccination or provide support to anxious members who find themselves ‘on the fence’.

Blurring Traditional and Alternative Medicine

As discussed, the prevailing medico-scientific discourse does not mean no concurring alternatives are present. At a glance, cautious vaccination claims sometimes draw on so-called alternative knowledges. In the forums, the articulation of such alternatives includes nutritional therapies, homeopathy, naturopathy, acupuncture and – less frequently mentioned – prolonged breastfeeding (see also Barry 2006; Deml et al. 2019; Lupton 2012; Reich 2014; 2020b). However, in one of the forums, traditional and alternative healing practices are not necessarily set in opposition to each other. Some members share how they combine traditional medicine with alternative treatments. Others discuss how traditional medicine is not opposed to, but rather part of, ‘the natural’. For instance, a member writes about vaccines strengthening the immune system rather than replacing it, and therefore as something that can be combined with natural remedies.

Additional difficulties in making a clear-cut distinction between medical and anti-medical stances arise in the case of vaccination-cautious parental attitudes which are supported by health professionals (see Kaufman 2010). In other words, the questioning of medical authority is not necessarily coming strictly from lay people but can also be expressed by health professionals. Members who support vaccinations bring this up when they distinguish between ‘medical consensus’ and ‘anti-science physicians’, as discussed in an earlier section. Thus, it is not as simple as to discern medical doctor from a layperson. In addition, parents of children for whom medical or pharmaceutical treatment is being considered, as well as patients who are considering treatment themselves, may also challenge medical authority, but not necessarily by disputing medical knowledge and orthodox medicine per se. For instance, the argument may be brought up by vaccine-cautious members in relation to their negative experiences of certain medical doctors or in relation to specific vaccines. Put differently, vaccine-cautious parents do not necessarily discuss rejecting medical treatments for their children altogether, but selectively opting for some and refusing others. In the forums studied, members also blur the medical–anti-medical divide when they discuss so-called ‘catchup schedules’.

What catch up schedule did you choose? […] Our first was not vaccinated after their first round and we’ve changed our mind on vaccination. We would like [our children] to be caught up but don’t have the knowledge of how to do that in the best way. (Inclusive Vaccine Debate)

The passage above suggests that a stance on vaccination is not permanent, as members may change their mind about not vaccinating their children according to the recommended vaccination schedule. Thus, refusal can sometimes be temporary, with the issue being postponing vaccination and opting for so-called delayed schedules for children to be vaccinated when they are older. In this way, parents can avoid vaccines and yet, to paraphrase Sobo (2016), refuse to refuse and in this way avoid being labelled as ‘antivax’.

Given that medico-scientific discourses are central in the discussions between vaccine-cautious and vaccine-confident forum members, it is no surprise that another interrelated liminal zone between vaccine advocates and those with a cautious view on vaccines lies in the medical and neuropsychiatric diagnoses that remain uncontested. For instance, vaccine-cautious members may challenge the idea of the risks of catching preventable diseases, only to replace it with the risk of other diseases, disorders, adverse side effects and somatic symptoms that are believed to be caused by vaccinations. In the forums, the discussions concerning autism, for instance, is not related to the existence of autism as such but rather whether it is something that should be feared or looked down on, in addition to whether vaccines have something to do with it. Thus, in contrast with, for instance, disability activism and the neurodiversity movement (where diagnoses are viewed as products of disabling societies and autism is viewed as a difference rather than a disorder) or the fat acceptance movement (which is a critical response to the stigma of obesity) (Hart 2014; Heath et al. 2004; LeBesco 2004; Lupton 2012), some members’ reference to ‘injury’ in forum vaccine debates implies the adoption of a medical understanding that these conditions do exist and in this case are even considered pathologies.

Reclaiming the (Non-Pathological) Public

The widely accepted and conventional understanding of symptoms and syndromes can, in certain respects and contexts, be relied on only to be overturned in other ways. As I will argue, the central aspects here are the meanings and significance ascribed to (or not ascribed to) genetic heredity, a common topic in vaccination debates. Before I illustrate my point in relation to autism, it is important to note that both public-health discourses and public vaccine debates foreground environmental factors, as can be seen in the passage below.

The [antivaxxer] was claiming they weren’t going to continue vaccinating their future children because their other two were diagnosed with autism and adhd. OP obviously was attributing those developmental disorders to the children getting vaccinated. (Vaccine Information)

It’s my understanding that adhd is genetic (plus some environmental triggers) while autism also has a genetic component – alongside a whole list of medical reasons that have nothing to do with vaccines. The increase in children with these diagnoses has everything to do with the fact that we now can easily diagnose these things. There’s also something to be said about the change in a woman’s body due to food and other environmental triggers that could cause someone to be born with autism – but that’s a different discussion. (Vaccine Information)

Even though the vast majority of epidemiologists and clinicians connect the rise in the numbers of autistic children to changes in diagnostic categorisation, awareness among parents and routine testing by health staff when diagnosis is a precondition for accessing some services, there is also research that does not entirely exclude the role of what the forum member calls ‘environmental triggers’. This, in turn, leaves open to interpretation the issue of possible connections between vaccinations and neurodevelopmental harm to children (Kaufman 2010), as well as other non-genetic risks.

In stressing the importance of environmental factors, particularly the neurotoxin ethylmercury – which has been used in vaccines (Kaufman 2010), some vaccine-cautious parents address and strive to gain control over the environmental factors to autism which they connect to vaccines. They can claim that autism is in some contexts genetic but not in all, alternatively they question the idea of autism having anything at all to do with genetics by attributing autism with vaccine side effects. In the vaccination debate, this emphasis contrasts with the established causes of autism (which point to genetic causation). Or as a forum member puts it:

[Anti-vaxxers] can’t handle that genetics have played a part in whatever they perceive is ‘wrong’ with their kid. They have to blame something else and vaccines are the easy target. (Vaccine Information)

By holding vaccines and pharmaceutical companies, ‘Big Pharma’, accountable rather than their family lineage, some citizens are reclaiming expertise on their genes and thus ‘purifying’ their lineage from transmittable defects and disorders. In contrast to the discourse of genetic citizenship, which relies upon what Kaja Finkler calls ‘hegemony of the gene’ and ‘medicalization of kinship’ (2000: 3), vaccination debates differ from health activism investing in scientifically literate others by calling for treatments that are not yet available in the hope of controlling genetic diseases that afflict the vulnerable few (Heath et al. 2004; Lupton 2012; Rose & Novas 2005). As mentioned in the aforementioned passage, the blame is placed on the (MMR) vaccine, not genetics. I interpret these reworkings as pointing towards a new articulation of bio-citizenship by inscribing the genetic self into the social non-pathological body. In this context, ‘the war’ on vaccines interrogates a medico-scientific discourse, which in turn includes negotiations and views surrounding clinical practices/treatments, pharmaceuticals and the content in vaccines; in addition to which it also provides links to a public-health discourse. Therefore, some previous discussions tend to place the vaccine debate along the axes of individual–public and vaccine-cautious members in opposition to public health (e.g. Reich 2014), an opposition which, I argue, is in fact much too complex to be reduced in this way. Rather, vaccine-cautious arguments can be seen as family- and kin-oriented, while simultaneously depathologising genetic kin and in this way reclaiming the neurotypical ‘healthy’ public.

Conceptualisations of the body – particularly the body of the child – is crucial for these reclaims. Whereas research discusses how public discourse is associated with the ‘potentially sick’ child needing immunisations, vaccine-cautious members envision the child as ‘naturally healthy’ (Reich 2020a; 2020b: 109). Naturally healthy children are not immune to infections, however infections are thought to either strengthen children’s immune system (Reich 2020a; 2020b) and, as forum members point out, be a potential risk to the child’s health. However, in the forums, vaccine-cautious parents may discuss such risks as reduced because their geographical area is not considered risky. Even though these two approaches to the child body are different in terms of whether vaccinations are needed, they both reinforce the idea of disease being caused by external factors. In this way, vaccine-caution members can dispute the association to genetic and hereditary or innate factors, while at the same time not disputing established ideas about existing diseases and disorders. While children are central in these conceptions, children and young people are largely absent in the online forums studied, as will be discussed below.

Making Sense of ‘Silences’: The Absence of the Un/Vaccinated Children

In the early years of childhood when children are supposed to receive their immunisations, they are so young that their right to participate and have a say is overlooked. Therefore, both in practice and in research, child vaccinations are often an issue of adult responsibility, primarily that of parents and guardians. Though research has discussed how parents (often mothers) who refuse to immunise their children have often been viewed as morally ‘bad’ or a hazard for public health, and accused of neglect in the public debate or in their social circles (Kasstan 2021; Reich 2020b; Silverman & Wiley 2017), parental decision-making in and of itself is a less contested issue. In the light of emerging research on children and young people’s participation, activism and children’s rights in health-related and other contexts, and the notion of adult power or adultism (denoting prejudice against and marginalisation of young people) (Holmberg & Alvinius 2020; Mayall 1996; Tisdall & Cuevas-Parra 2022; Wall 2022), and considering that the ‘war’ is mainly over ‘child vaccines’ that are given (or refused) to children (Conis 2014), the absence of young people’s views and representation in these debates, is remarkable. This includes the absences in the research discussing (parental) vaccination-related decision-making processes, attitudes and debates.

When I addressed this absence in a forum, mainly vaccine-confident members replied. As one of the participants informed me: ‘I merely support minor children of [anti-vax] parents getting themselves vaccinated’. Another forum member adds:

Minors should always have a say, but should be guided by logical thinking. […] Letting minors have a say with vaccines starts as soon as your child can be educated in science. It takes a lot of science to understand vaccines, so you start as soon as possible. (Inclusive Vaccine Debate)

[…] it’s no point talking [about] the immune system to a 2-year-old if the kid is just starting to be able to do maths and understand beginning science books. What moms and dads should do though, to combat the international decline in science literacy and mass hallucination about COVID misinformation, is to teach all their kids science literacy to the maximum possible for the kid’s age and development. (Inclusive Vaccine Debate)

The participation discussed and supported in the passages above suggests that vaccination-related decision making is open for children’s participation insofar as it is limited to pro-vaccine children with vaccine-cautious parents only.

Health is an area of expertise that is commonly restricted to scientists and health professionals, or as seen above, those who are ascribed ‘science literacy’, hence one that tends to exclude young people and especially young children as participating subjects (Knezevic 2021; Mayall 1996). In the passage above, ‘science literacy’ becomes one threshold for participation, but ‘the kid’s age and development’ marks a further limitation, largely formulated within a developmental discourse which interlinks a child’s biological body (age) to cognitive stages of development (maturity). As discussed elsewhere, age and maturity are determining factors for participation in developmental discourses and are supposed to be assessed by literate adults (Knezevic 2021; see also Burman 2017). This suggests that children who are assessed as old and mature enough may be informed about vaccines and may be (co-)decision makers.

However, as another member writes, children and young people participate actively in campaigns to reduce the age threshold for young people’s vaccination-related decision-making. Something similar is discussed in other postings:

We already know of angry teens whose parents did not get them vaccinated. The [state government] recognises this and allows 14-year-olds to go and get their catchup shots without their parents’ permission. (Inclusive Vaccine Debate)

One indication of the increasing visibility of young people’s participation, conditioned by vaccine confidence, can also be exemplified by the youth organisations VaxTeen and Teens for Vaccines. Another one can be seen in the media coverage of the public figure and self-proclaimed ‘pro-science’ and public health activist Ethan Lindenberger, from Ohio. Although Lindenberger is known as the ‘vaccine kid’, he was 18 when he decided to go against his ‘anti-vax’ mother’s advice to refuse vaccinations, get himself immunised, and testify in front of the Senate about it in 2019 (Epstein & Horton 2019).

Today Lindenberger is referred to as a role model in campaigns encouraging to lower the age of consent for unvaccinated children. However, his controversial testimony for the Congress has also drawn criticism. On Twitter, a parent posted ‘Will you let the child testify?’. Only here, the depicted child suffers from a neurodevelopmental condition to the extent of being unable to communicate, as the post seems to imply. The point was clear; that young people whose neurodevelopmental condition had made them unfit to testify against what was assumed to be the very vaccine that caused the harm.

Similarly, while the rhetoric of rights-, free choice- and bodily integrity is reoccurring in vaccine-cautious communities (Hardy 2020; Reich 2014; 2020b), paradoxically, vaccine-cautious forum members seem not to debate children’s own say in a matter that affects them, in this case vaccination and health. In parental assessments of ‘vaccine injuries’, individual children figure in a rather objectified way. The figuration of the ‘vaccine injured child’ further undermines children’s participation status. In fact, the representation of developmentally ‘injured’ young people as having difficulties communicating, as mentioned above, supports the idea that parents should claim on behalf of their objectified children, for whom participation is obscured. Thus, the centrism on bodies notwithstanding, does not suggest that anybody gets to speak up.

Even in the case of the frequently used terms in research that describe knowledges – experiential, embodied, personal (Barry 2006; Deml et al. 2019; Reich 2020b) – adults are foregrounded. In the forums, it tends to mean members who have observed side effects in health status of children and others, hence not necessarily members who have personally experienced and embody the effects. Research shows that in vaccine-cautious accounts that question medicalisation as ‘one size fits all’ (Reich 2014: 691), children become the subjects of parents’ (mostly mothers’) experiential knowledge, rather than as a group that medical or scientific experts know something about (Reich 2014). However, one member who critically discusses vaccinations shifts the focus to the child’s experience:

My opinion is that we give vaccines too young, too many, too close together to babies and children who do not even have the capacity to know if something is wrong, or how to tell someone. Every human being should have the right to decide what happens to their bodies especially when those choices can irrevocably change them for the worse for the rest of their lives. (Inclusive Vaccine Debate)

Here, vaccines should not be given to young children who lack ‘the capacity to know if something is wrong, or how to tell someone’. This implicit suggestion to postpone vaccines and adjust the recommended vaccination schedule, however, poses challenges for both the child and the society, as vaccine-confident member often stress in the forums.

Argumentation about vaccinations, regardless of the stance towards vaccination, tends to be based on the idea of what is in the best interest of the child (Brunson & Sobo 2017; Kasstan 2021; Reich 2020a). As seen above, this may mean vaccination and non-vaccination. It may mean not to get vaccinated when too young, or according to set schedules. Despite these different ideas, a common taken-for-granted assumption is that the best interest of the child up to a certain age is to be defined by somebody other than the child concerned or children as a social group.

Previous descriptions of vaccination-related decision-making rationales are limited when it comes to understanding these areas of agreement – and in the case of young people, areas of exclusion. This includes research that contrasts the free-choice argument with the public good but reduces free choice to adults who choose to delay or refuse (see Silverman & Wiley 2017). Similar to the citizenry ideal of choice, civic obligation considers the obligation of parents and guardians to have their children vaccinated. Thus, on both ‘sides’ of the debate, young children are viewed through a developmentalist discourse and therefore as incapable of forming their own decision.

Conclusions

This article has argued for a broadening of George Marcus’s (1995) strategy of ‘following the conflict’ and has described how such a broadening emerged as a result of a search for the taken for granted ‘agreements’ within the disagreements, as well as ‘silences’, in the context of online interactions between vaccination-confident and vaccination-cautious forum members.

An emphasis on agreements and silences is in alignment with anthropological and poststructural research where liminal zones and continuities are in focus and where light is shed on complexities in a nuanced and ‘thick’ manner (Archambault 2017; Britzman 1995; Geertz 1973: 27; Turner 1969). In addition to shifting the focus of analysis to those in-between and those without a precise standpoint on vaccinations, the proposed strategy of following agreements and silences enables a modest effort to put vaccine confidence on the map of health activism and social movements more generally. The strategy is also useful to the ethnographer who employs multi- or changing positionality. Rather than neutral and detached, such a positionality can be seen as an effort to avoid depicting the vaccination debate, to paraphrase Byron J. Good (1994: 15), as an oversimplified or fixed ‘juxtaposition of belief and knowledge’.

Contrary to the popular belief that these are debates between pro-science and conspiracy theorists, an agreement-oriented following helps to set the debate in a broader context that portrays both ‘sides’ as two sides of the same coin. The vaccination debates studied largely point to a truth-seeking within medico-scientific discourses in the sense that both vaccine-confident and vaccine-cautious forum members are eager to present their arguments in medico-scientific terms. However, both vaccine-cautious and vaccine-confident members are pushing the limits of medico-scientific concepts and traditional dichotomies such as scientific–unscientific. Both may rely on anecdotal as well as research evidence. While a point of disagreement is whether vaccines may be associated with risks for certain medical side effects and neurodevelopmental conditions, a fixed meeting point in the debate is marked by the taken for granted biomedical definitions of disease and disorder that largely remain unquestioned. Furthermore, certain aspects of the environment and the collective are invoked which to some extent challenge previous ideas that vaccine caution is in opposition to the collective or public. As argued, by ascribing autism to environmental risk factors rather than genetic factors, members with an autistic child can (re)claim the neurotypical public and rearticulate bio-citizenship in the process.

This study adds silences as other, albeit implicit, forms of agreement in the vaccination debate once its discursive boundaries are marked. The article considers how a debate that mainly discusses ‘child vaccines’ that are given (or refused) to children nonetheless excludes young people from participation and decision-making. Despite previous nuanced descriptions concerning the differences in conceptualisations of literacies and children’s bodies in vaccination debates, children’s participation is largely an overlooked theme in both research and the debate studied and children and young people’s knowledge of their own bodies and health remains unaddressed. As discussed, the exclusion of young people can be seen as a result of a liminal zone of the debate – adultism – which adds to previous notes on gendered, classed, and raced health activism (e.g. Reich 2014; 2020b; Wall 2022). Adultism is reinforced through the widely held notion of the scientifically literate – educated, mature and able-bodied – adult rights- and duty-holder. Furthermore, a particular conceptualisation of experiential knowledge as knowing the (child) other, is underpinned by adultism. This suggests that claims to free choice as well public good, rights or duties, are claims made on behalf of scientifically illiterate child others – rather than choices, or rights of the (injected) young individual.

In the light of these findings, the study calls for additional research on young people in vaccination contexts and further reexaminations of the adultist conceptualisation of bio-citizenship, literacies and knowledges. More research attention is needed on the tensions between, on the one hand, child rights discourses that evoke the idea of children’s right to health and participation and, on the other hand, health as a knowledge area that is reserved for scientific and health experts and, in the context under study, also parents. In addition, the notion of ‘refusal’ in this context takes on new meanings and should be broadened to include young people who, regardless of their position on vaccinations, oppose adult authority and decision-making. More attention needs to be given to the forums in which young people navigate this terrain when expressing their opinions about vaccines. The incorporation of scientific claims in activism in contemporary times more generally – from climate/environmental activism and social justice activism to health activism – is important to consider. While children and youth are excluded from such claims, as findings in this study mainly emphasise, young activists also may draw on and rearticulate scientific claims in pursuit of their agendas. Furthermore, in the backdrop of previous findings, also young people’s participation in the debate needs to be met with caution (see Lindén 2013). With phrases like ‘Young people taking responsibility for their own health to put an end to preventable diseases’ (VaxTeen 2024), youth organisations face the challenge of involving young people without slipping into the neoliberal trap of placing responsibility on the young individual for his or her health.

Acknowledgements

I would like to thank the research participants for granting me permission to cite lengthy posts and share them with the readers. I would also like to express my gratitude to the two anonymous reviewers, as well as the editors of Ethnos, for their useful and insightful comments and attentive reading of earlier drafts of this article.

Disclosure Statement

No potential conflict of interest was reported by the author(s).

Notes

1 In this essay, I use the term ‘the vaccine war’ to describe the portrayal of a conflict between so-called pro- versus anti-vaxxers, which sometimes also is used in the community forums under study, for a similar purpose. However, it is more common to link the expression to films and documentaries with the same title, such as the documentaries directed by Jon Palfreman and produced by Kate McMahon, or by the producer Laura Davis and film director Tjardus Greidanus. The Vaccine War is also the title of a film directed by Vivek Angihotri and produced by Pallavi Joshni.

2 This meant English-speaking participants on the favourable side of the digital divide and predominately located in the United States.

3 To avoid tracings, the forums have been given fictional names.