Competing Interest Statement

The authors have declared that no competing interests exist.

Ethics Statement

The individuals in this manuscript have given written informed consent (as outlined in PLOS consent form) to publish these case details.

Corresponding Author

Rachel Oidtman, E-mail: [email protected]

Alex Perkins, E-mail: [email protected]

Data Availability Statement

Data provided by: https://mapokemon.com from Alexander Wigmore

Competing Interest

The authors have declared that no competing interests exist.

Competing Interest

The authors have declared that no competing interests exist.

Competing Interests

We declare we have no conflict of interests.

Ebola Virus Disease and Cholera

Suspicions and violence against health workers during epidemics have not been unique to Africa, EVD, or the recent past. Instead, the historical record clearly shows that while some diseases, even with rapid contagion or high levels of mortality, brought societies together as with Yellow Fever in nineteenth-century America⁷ and the Great Influenza of 1918-19 globally^8,9, others have possessed potent social toxins. One to have riddled European history with violence was cholera and not only during its first pan-European tour of the 1830s. In places such as Italy and Russia, this violence continued into the twentieth century and the number of communities that revolted even expanded over time⁸.

Certain comments and protest slogans, such as ‘Ebola is a lie!’⁴ and ‘Here, if the people come in [to the hospital], they don’t leave alive’³ recall nineteenth-and-early-twentieth-century cries during cholera riots in Europe. First, even though Ebola is a virus and cholera’s agent, a bacterium, similarities between the two are striking. Their major symptoms include diarrhoea and vomiting, which cause rapid dehydration; both have manifested extraordinary high case fatality rates of 50 per cent and often more (at least in Africa for the former, and before the twentieth century for the latter)^8,10; and the socio-psychological reactions of both have led to collective violence as witnessed with EVD in Guinea, Liberia, and Sierra Leone. Levels of violence and destruction with cholera in Europe greatly exceeded those recently seen with EVD in Africa: for the former, crowds numbering as high as 10,000 rioted and could destroy entire cities as at Hughesofka (present-day Donetsk) and as late as 1892 and with those killed by rioters and subsequent state repression numbering in the hundred.¹¹

In the first pan-European cholera wave of the 1830s, riots spread across Eastern and Western Europe from Sicily to Baltic regions, from central Russia to Ireland and across the Atlantic to cities in South and North America. Moreover, no epidemics have provoked such violent antipathy to the medical profession as cholera (the Black Death of 1348 included), with the murder of physicians, surgeons, pharmacists, and nurses and the ritualistic destruction of hospitals and medical equipment^{8,12,13,14,15,16,17,18}.

Across strikingly different cultures, economies, and regimes, the content and character of cholera conspiracies, mistrust and the targets of rioters’ wrath were uncannily similar. Without any obvious communication among rioters from New York City to villages in Asiatic Russia similar stories of elites in conjunction with medical professionals masterminding culls of the poor with wilful poisoning repeated themselves and triggered hundreds of riots (see references above).

Few have studied the persistence of cholera’s core myths and class hatred. As late as 1911, during Italy’s last major cholera wave, over twenty riots erupted, comprised of impoverished workers, fruit and vegetable cultivators, fishermen, women and children sparking crowds up to three thousand to burn down cholera hospitals, level town halls and other government buildings, and murder doctors, pharmacists, mayors, army generals, and carabinieri. As with recent EVD, the rioters pictured themselves as defending their relatives and neighbours against imagined state-led plots executed by doctors to poison their communities. The riots concentrated in mainland Southern Italy but also occurred in northern towns as at Segni, north of Rome in October, 1911, when 3,000 attacked doctors, cholera hospitals and municipal buildings^8,19.

By the late nineteenth century Cholera protest had also evolved in other directions with quarantine regulations provoking demonstrations and violence. For instance, at the seaside town Civitavecchia, north of Rome, a crowd of 1,800 of ‘tourists and visitors of all classes’ rioted in 1884 against these violations to their freedom. They besieged railway stations and took ‘a freight train by storm’.¹⁹ More often, similar to ‘the common sense’ reactions in villages and city districts in Guinea in 2014², protests concerning quarantine cut in the opposite direction: populations rioted because the state had refused to erect barriers to protect communities. Vigilantes led brutal attacks against those escaping infected places as at Monreale (near Palermo) in 1887. Armed with rifles, the monrealesi attacked those fleeing cholera-ridden Palermo, forced the evacuees to camp in fields and stabbed a boy, ‘driven by hunger’, to death.²⁰

As with the violence during recent Ebola riots, the reactions and motives of cholera protesters cannot always be described as ‘irrational’. As early as 1867, ‘mobs’ at Naples attacked government offices because of the national government’s incompetence and irresponsibility in improving the city’s sanitary conditions and infrastructure after years of false promises²¹. Yet alongside new protests, the old ones have persisted8, even during the present seventh cholera wave beginning in the 1960s. In 1992, for instance, the Venezuelan government blamed cholera’s spread on the poor’s dirty, uncivilized habits, especially their diet of crabs, while the poor accused the government and multinationals of poisoning their food (especially their crabs) to kill them off²². In Brazil similar blame from elites completely neglected the socio-economic roots of cholera and led to the resistance of impoverished residents against the government’s preventive measures²³.

However, in other countries – the United States, France, and Britain – cholera riots virtually disappeared after 1832. Clearly, these societies were more successful in easing distrust and class tension brought on by the horrors of cholera. With passage of the Anatomy Act in July 1832, for instance, the British state aimed to reduce mounting fears held by the poor that cholera was a state invention to kill them off and to supply cadavers for the new anatomy schools¹⁷. With subsequent cholera waves in the British Isles, only a handful of small riots numbering in the teens, and not the thousands appeared. Yet these differences across time and place have yet to be studied⁸.

One hypothesis explaining the longevity of cholera riots in Eastern Europe points to the state’s continued ruthless intervention and its draconian quarantine regulations²⁴. But, in Spain, Portugal, and Italy from the 1860s to the end of the century, the reason for cholera riots was often the opposite: state reluctance to impose quarantines sparked crowds to revolt.

Understanding resistance in Liberia

In Liberia various forms of community resistance were reported against measures of surveillance, quarantine, isolation, and treatment, such as denying the disease existed, spreading rumours that EVD was transmitted by intentionally poisoning wells or food, that NGOs or the government had spread it to make money, that NGOs used body parts of EVD victims for profit, that whites had introduced EVD to stop the hunting of apes in forests. As a result, on several occasions Liberians refused to obey quarantine regulations, to report or isolate the afflicted, performed secret and unsafe burials, and, as seen above, attacked health care workers and health facilities.

Community resistance to EVD regulations must be analysed in context. Towards the end of 2014, after the epidemic peaked, the government introduced new policies for contact tracing and active case finding. Hundreds were forced to remain quarantined in their homes, often without adequate food and water. Many were forced to violate the quarantine to buy basic provisions in the markets in order to survive.²⁵ Living conditions among those quarantined were often overcrowded, with lack of basic sanitation and no running water. Add to that the constant fear that a beloved one or indeed oneself might be developing symptoms of a disease that only few survived.

Other inconveniences and insensitivity on the part of the government and health agencies made matters worse for afflicted communities. For instance, at the peak of the epidemic, when ambulances picked up those suspected of being infected and carried them to Ebola Treatment Units (ETUs), health authorities rarely informed the families where their relatives had been taken or if they had tested positive. Authorities failed even to inform families if their loved ones had survived or died, causing local populations to believe that patients simply ‘disappear in the ETUs’. As a result, these centres were seen as death camps from which no one returned alive. Rumours spread that the victims had not died of Ebola but had been murdered in the ETUs to harvest their blood and organs. Such tales were similar to those underlying cholera riots, especially in 1832 in the British Isles, when hospitals were seen as abattoirs producing body parts and cadavers for medical instruction. At Monrovia, a large U.S. army ship, anchored in its harbour, was perceived to collect body parts of the Ebola dead to benefit Americans. Stories circulated of patients being neglected in ETUs or starved to death²⁶, and government and health agencies unwittingly spread negative publicity about EVD and its spread, declaring it was a deadly disease without cure. Such messages fanned fear, contributing, no doubt, to the resistance sketched above.

Increasingly, relatives who died at home were not reported to authorities and buried secretly. These burials were often unsafe and a key vector to new infections. Secret burials mounted in number, because of fear of being quarantined or stigmatized. Furthermore, the enforcement of ‘safe burials’ violated communities’ religious beliefs and customs²⁷. By August 2014, fears worsened when the government ordered all corpses cremated: serious resistance now spread to many communities. Police and military forces were deployed along the road leading to the crematory to protect the “Ebola burners”²⁸. However, the government was accused of being inconsistent in how they performed burial practices. Financial ability or social connections would determine who was cremated and who was buried^27,29. The order remained in force until January 2015, when finally a burial ground was created near the Capital, Monrovia.

Such occurrences find historical parallels with cholera, when municipalities also prohibited traditional funerals, burials in churchyards, and especially the Irish wake. Enforcement of these regulations (as in West Africa) led to concealing cases and provoked large-scale riots among immigrants in Bristol, London, Liverpool, Glasgow, Edinburgh, New York City, and other towns during the first European cholera wave. Similar measures had similar consequences in Asiatic Russia, Eastern Europe, the Iberian peninsula, and Italy; yet here governments’ insensitivity persisted longer. Space allows only a brief look at an Italian case from its first cholera wave in 1836-7 to its last major one in 1910-11. Throughout, authorities continued to prohibit non-elites (il popolo) from performing their traditional burial rites, visiting afflicted friends and relations, and viewing the cadavers before burial. Such class-based impositions sparked fears that doctors backed by the state had poisoned the cholera afflicted or had buried them alive, while Italian elites continued to bury their love ones stricken by cholera in traditional ecclesiastical grounds. Seeing their relatives unceremoniously ‘thrown into ditches’ of newly-created cholera grounds outside towns and villages, the popolo in Sicily rioted in numerous places in 1837³⁰. The same ensued at the Pugliese town of Ostuni in 1837 with its popolo shouting they would not tolerate it.³¹ But Italian authorities appear not to have learnt the lessons. During Italy’s last major cholera wave in 1910-11, the state continued to impose the same burial restrictions, provoking fears of poisoning and live burials. But now Ostuni’s collective violence exploded beyond its previous experiences. In mid-November 1910, 3,000 (in a town numbering 18,500) wrecked the cholera hospital, ‘liberated the patients’, paraded them home, burnt down the town hall and offices of the health department, took possession of the town square, attacked health workers, stoned carabinieri, and destroyed doctors’ homes^32,33.

Back to Liberia: considering certain government measures, the insensitivity in which they were implemented, the lack of support, and comparisons with Europe’s past, it is surprising that more people did not resist openly. Instead, most Liberians cooperated with the response teams. In the beginning of the epidemic with people dying in the streets, not enough space was available in ETUs, and when a 120-bed ETU in Monrovia opened on 21 September 2014 it became full within hours.³⁴ Often transport was unavailable, and patients were forced to wait days for ambulances or were carried to ETUs by taxis, bikes, or in wheelbarrows. ETUs were understaffed, and everywhere essential materials were lacking. Matters began improving only after the epidemic had peaked: international support began to arrive, and several new ETUs were built.

Community engagement

In virtually all former EVD epidemics in East and Central Africa, violence, community resistance or suspicion was reported, and these experiences resembled those in 2014/15.^35,36,37 Anthropologists recommended that in future epidemics communities should be encouraged to be more involved in the medical response so that inhabitants would be seen as allies, not as enemies. In the recent epidemic, the same is demanded: public health measures work only when authorities listen to the affected communities and involve them non-paternalistically, allowing confidence in the health system to develop^26,38 The WHO Ebola Interim Assessment Panel in its final report from July 2015 expressed its surprise and dismay on the lack of engaging local communities in the response and that ‘culturally sensitive messages and community engagement were not prioritized’.³⁹ While in the WHO’s document ‘Roadmap for Action’⁴⁰ community engagement is merely an addendum, the 2015 WHO Strategic Response Plan⁴¹ stresses community engagement mainstreaming as one important pillar in the Ebola response with clear outputs and key activities. As a matter of fact, WHO was the first organisation to employ anthropologists in Ebola response teams, recognizing that EVD containment should not only be seen bio-medically but also from a socio-cultural perspective. In the retrospective joint report by Harvard University and the London School of Hygiene and Tropical Diseases⁴² the poor understanding of the importance of community engagement is mentioned as a system weakness but this critique did not lead to any recommendations. Violence, serious social disruptions or workforce- and community safety are not explicitly mentioned in any documents, nor is their historical context.

In conclusion the recent adverse reactions to EVD in Western Africa have not been new to history or unique to Africa. Instead, the distrust and violence seen in Guinea, Liberia, and Sierra Leone in 2014/15 parallel Europe’s long encounters with cholera from 1830 into the twentieth century. This European past combined with recent events in West Africa can provide lessons for policy makers. First, authorities and health workers must recognize that some diseases have greater potential to spark distrust and violence than others, and the former tend to be ones with high fatality rates, when victims enter health facilities but few return alive. Second, responsible public health experts must negotiate carefully funeral and burial practices central to the ritual life of Africans as they have been for Europeans. Regulating these matters mindful of infection prevention and epidemiological factors alone, without engaging the afflicted communities or their leaders, not only risks triggering resistance, distrust, and violence; it threatens fanning the spread of the epidemic beyond control, increasing misery and the numbers dying.

Competing Interest

The authors have declared that no competing interests exist.

Disclaimer

The opinions expressed here are those of the authors and do not necessarily reflect the positions of WHO.

Approaches to eradication

Undeniably both of these programs have made remarkable progress since those first commitments to eradication were made (Fig. 1). Both have reduced endemicity to only a few countries and decreased the global burden of disease by over 99%. The approaches to eradication, however, could hardly be more different. Guinea worm is being defeated without a vaccine, without treatment being available, and behavioral change is central to the effort. Guinea worm’s life cycle is interrupted through simple physical barriers and human behaviors play a key role in their maintenance. For polio, vaccination is the alpha and omega of eradication.

Guinea worm’s eradication program has focused on the provision of clean water; pipe and cloth filters to prevent ingestion of the worm; larviciding potentially infected water sources; and preventing the reintroduction of copepods into drinking water.¹¹ This last action is key. As the guinea worm emerges from the skin and the burning pain becomes intolerable, the sufferer is inclined to soothe the affected limb in water, whereupon the female worm releases its larvae and re-infects resident copepods. The worm emerges incredibly slowly and extraction involves winding it around a stick a few millimeters a day until, some months later, it is removed intact. During this time patients are housed and wounds are dressed until they no longer pose a risk. The motto for years in the Carter Center and CDC’s ‘Guinea Worm Wrap-up’ was: Detect Every Case, Contain Every Worm!¹²

Like guinea worm, polio is untreatable, debilitating and disabling. A vaccine is, however, available – and essential – to prevent polio. This has been the cornerstone of the eradication effort from its inception. Once vaccination coverage is consistently high enough in areas where transmission is occurring, the virus ceases to circulate, and then – without an alternative host – ceases to exist. This strategy has seen polio disappear from the Americas, Europe, Oceania and the Western Pacific. Type 2 polio virus (WPV2) has already met with extinction. Type 3 (WPV3) has almost certainly followed with the most recent reported onset in a case in November 2012.¹³ If certified – following three years of surveillance with confirmed absence – that would leave type 1 as the last remaining wild polio type in existence.

So, is this a slow but steady movement towards certain victory? Will these public health investments be repaid a hundred-fold in decades to come? Perhaps, perhaps not. It is testament to the supreme efforts of the dedicated men and women in public health through the 1970s that smallpox eradication became a reality. It may also be a consequence of their success that the ambitious program to eradicate polio was conceived and committed to; a program that has missed deadlines and is as yet not fulfilled.

Progress and challenges in polio eradication

At the beginning of 2002, the battle to eradicate polio looked near to won, at hare-like speed. The total number of cases globally in 2001 was 483 with only eight cases occurring in non-endemic countries. The number of endemic countries had fallen from 20 in 2001 down to 10 the following year. India had the majority of cases at a mere 268. Yet two years later in 2003 the global total had risen to over 1900 cases and India alone had 1600. Nigeria, which had 28 cases in the year 2000 had 1122 cases by 2006. As quickly as one country would stop transmission, another would become newly infected.¹⁴

What had gone wrong? This staggered progress illustrated a number of enormous challenges. India’s backward steps related to several technical, social and logistical challenges. Firstly, there was the challenge of delivering polio vaccines to poor, overcrowded regions, especially in the hugely populated northern states of Uttar Pradesh and Bihar, where even basic sanitation was often absent. These two states combined had over 500,000 births per month; all requiring vaccination before encountering the virus.¹⁵ Parts of Bihar spend almost six months submerged by India’s monsoonal rains, isolating literally thousands of villages and hamlets. Secondly, it was discovered that in these crowded and unsanitary conditions, virus transmission was the most highly efficient in the world.¹⁶ Finally, these northern states contained a small but significant percentage of families within a Muslim minority, suspicious of state interventions and concerned the polio vaccine was a means of population control.¹⁷

Nigeria demonstrated just how critical trust in the vaccine and those delivering it was to a successful eradication program. In late 2003, the northern states of Nigeria stopped polio vaccination altogether for several months, leading to a massive re-emergence of polio cases. Again the mistrust was in part based around a belief that polio vaccination was a state-sponsored mass fertility control measure. Only with the understanding and support of key religious figures in the north did vaccination recommence. Both northern Nigeria and northern India highlighted yet another substantial threat; that of the trans-boundary export of the virus to other countries. Viruses originating from Nigeria eventually spread to over twenty states across Africa and beyond to Yemen and Indonesia.¹⁸

These backward steps changed, however, with the development of what some public health officials called a ‘game-changer’. It was a bivalent oral polio vaccine for sub-types 1 and 3, more effective than the old trivalent and no worse than monovalent for inducing immunity to type 1. It has allowed sub-type 3 to be gradually squeezed out whilst making steady progress against type 1. India, with its enormous eradication challenges, defeated the last pocket of wild polio in January 2011. Nigeria, with unprecedented religious support from imams, had reduced its cases in 2014 to six, compared to 53 the previous year. In August 2015, the African continent will have gone one year without a single polio case for the first time in history. Indeed, its last case of polio may already have occurred and the hare’s confidence is perhaps justified.

Notwithstanding the financial burden of the final mile (now close to one billion USD¹⁹ per year), two other substantial obstacles remain; one technical and the other very human. The oral polio vaccine (OPV) has been used in the remaining endemic countries even as developed countries continue to use the inactivated polio vaccine (IPV), which is injected. The primary reason for this is that the oral form can continue to be shed from the gut of vaccine recipients, thereby contributing to ‘herd immunity’ and increasing de facto population immunity. IPV can’t do that. The downside is that OPV can mutate back to a form of the virus that clinically causes polio and then ‘circulate’ just like wild virus, causing polio in any vulnerable child. Cases continue to occur globally. Only when no cases of wild or vaccine-derived polio occur, all remaining OPV-using countries are expected to simultaneously switch to IPV, but the cost and logistics are both daunting.

The other, and potentially more difficult challenge, is ongoing conflict in the tribal areas of Pakistan. In 2010 Pakistan allowed an expanding outbreak of polio, and 2011 continued to see cases.²⁰ The source of many of these is the administrative region of Federally Administered Tribal Areas (FATA) which saw a very active insurgency and extremely limited access to a large population of children. That changed in July 2014 when Pakistan’s army took control of previously inaccessible areas but this also saw a huge movement of people and the export of cases across the country. Progress has faltered. In 2014, the tenth report of the Independent Monitoring Board (IMB) on the Global Polio Eradication Initiative was scathing, labeling Pakistan’s polio program a “disaster” and highlighting the inertia in the response and the widespread pessimism regarding future prospects of eradication.²¹ The IMB’s entreaty for Pakistan to establish an Emergency Operations Center modeled after Nigeria’s highly successful center for polio and later Ebola has only just been heeded. Proof of effectiveness of the new national and provincial centers is eagerly awaited.

Progress and challenges in guinea worm eradication

The tortoise, meanwhile, in the form of guinea worm’s eradication program, continues to plod along with barely a backwards step. In 2003, Uganda reported its last indigenous case, followed soon by Mauritania, Benin, Côte D’Ivoire, Burkina Faso and Togo in 2006. In February 2011, Niger and Nigeria were recognized for going 12 consecutive months without an indigenous case of guinea worm. For Nigeria it was all the more exceptional given that it was reporting 3.5 million cases annually when the eradication program started.

South Sudan remains the last real bastion for Dracunculiasis, with 1698 cases in 2010. Yet even here, reported cases have consistently dropped year by year.²² There were a mere 70 cases in 2014 and no cases for seven consecutive months to June 2015. This is South Sudan’s “peace dividend”, even as that peace is challenged. As development assistance arrives in a newly independent South Sudan, one can only hope that such progress (and assistance) will accelerate, and that a genuine peace will enable this particular dividend to be won.

Will the tortoise inevitably win this race? Or, as in Zeno’s paradox, will the finish line become ever more inaccessible even as it nears? Guinea worm certainly looks to be moving inexorably towards eradication. Yet in 2010, after a decade of no cases, a disturbing report of 10 cases in Chad occurred, following discovery by a WHO monitoring mission in July. More worryingly, the origin of these cases could not be determined. Every year since 2010 Chad has seen further human cases across a wider geographical area, re-initiating its endemic status. Now Dracunculiasis infections in dogs – first noted in 2012 – is presenting an even more worrying hypothesis. The worm specimens from dogs appear to be morphologically and or genetically confirmed as D. medinensis and indistinguishable from human specimens. It seems that human and canine cases are associated with Chad’s intense fishing industry. Human and canine cases appear to occur following consumption of undercooked or raw fish respectively.²³ The way forward for prevention of cases and treatment of contaminated water sources is not entirely clear in this case.

Reflections on the finish line

So the hare, in the polio eradication program, is definitely taking periodic naps. Any hubris that might have existed in the past has been surely tempered by the setbacks of recent years, the backwards steps of Pakistan’s program and the emerging complexity of what lies ahead. The hare may be racing in Africa, but he is currently enjoying his repose in Pakistan.

The tortoise, in the form of the guinea worm eradication program, can definitely see the finish line. President Carter says that eradication will happen in his lifetime – he is 90. The final cases may well be in Chad, with the very last worm emerging perhaps in 2016 or 2017. Is that time enough to win? Will a good understanding of Chad’s curious epidemiology arrive in time to facilitate this victory? A backwards step now would be uncharacteristic of this plodding tortoise. Only time will tell.

So, what lies in the future for the hare and the tortoise? These authors are placing their bets on guinea worm to become the third eradicated pathogen. Polio eradication, on the other hand, is sitting on a knife-edge. Now is almost certainly the last chance for polio eradication since donor funds will dry up if progress continues to sputter along. The conflict-ridden areas of Pakistan and Afghanistan may continue to facilitate virus circulation for some months, perhaps years. The intractable hotspot of North Waziristan in FATA remains a hotbed of polio production in Pakistan. Urgently accessing the thousands of children who have never received a vaccination there is a necessary part of the solution. Emergency Operation Centers armed with the clarity, purpose and energy evidenced in Nigeria’s EOC would be a good start. The ‘peace dividend’ for polio would be incalculable. And a fable to rival one of Æsop’s could well be written.

Competing Interests

The authors have declared that no competing interests exist.

Competing Interest

The authors declare no competing interests.

Introduction

Mass vaccination has been widely recognised as a key public health achievement. However, vaccine hesitancy – bound up in uncertainty or lack of confidence in the safety and effectiveness of vaccination – may serve to undermine comprehensive coverage. Vaccine hesitancy is often examined on the scale of individual decision-making, or through referring to questions of ethics and freedom of choice. However, when considering the problem of vaccine hesitancy, social scientists of medicine would note that the public discourse surrounding vaccines – the way in which vaccines are represented and publicly understood – forms another important piece of the puzzle. It is not just individuals, but rather wider social representations of vaccination, which underpin vaccine hesitancy. Individual ‘choices’ are produced in the context of narratives and public conversations about the efficacy and safety of vaccine use. The ways in which vaccines are described and discussed in the public domain impacts upon private decision-making. Understanding these narratives is therefore pivotal to the wider understanding of the problem of vaccine hesitancy.

This paper examines the case study of the Council of Europe’s public criticism of mass vaccination during the H1N1 Influenza Pandemic. In December 2009, Council of Europe parliamentarian and epidemiologist Wolfgang Wodarg presented a recommendation to the Council of Europe entitled ‘Faked Pandemics: A Threat to Public Health’.¹ Following subsequent months of debate, the Council of Europe passed a motion decrying the WHO’s public health reaction to H1N1. Criticism of the H1N1 vaccine was central to these findings. Such contestations can have an important effect on the public discourse, for example through media attention and public discussion of vaccination. The Council of Europe’s criticisms were a source of extended media commentary, and public scrutiny over the use of vaccines during the H1N1 pandemic continues. This paper draws upon social scientific analyses of vaccine narratives and illustrates the ways in which the Council of Europe’s account of H1N1 vaccines both reflected and influenced the wider societal discourses on vaccine uptake.

This paper utilises narrative analysis from the sociology of health to draw out the way in which vaccines were discussed and criticised. Narrative analysis allows for the identification of ideological and discursive constructions,² including constructions surrounding the social ‘reality’ underpinning vaccine use. Narrative texts, as linguistic and discursive processes, are of fundamental importance in forming subjectivities and making the social world intelligible to those who live in it.² The analysis of texts is important in understanding representations of disease, as narrative texts both present and constitute cultural interpretations of reality,³ providing insight into the social discourse underpinning this phenomena. The narratives and quotes discussed here are drawn out of a wider project which examined the global health management of the 2009-2010 H1N1 Pandemic. As part of this, a comprehensive analysis was made of all publicly available documents produced and published through the course of the Council of Europe’s discussions surrounding the WHO’s management of H1N1. This paper particularly utilises data gleaned from the textual analysis of expert testimony, parliamentary debates, parliamentary reports, and documents produced by the Council of Europe during their examination of the World Health Organization’s management of the H1N1 Pandemic, focussing on statements concerning the use or misuse of vaccines in combating H1N1.

Sociological analyses of vaccine resistance and hesitancy can be dated from Stern’s⁴ key early work in the sociology of vaccine uptake, which articulates the irrational motives, beliefs, and the vested interests of those who resist the use of vaccines. Critical to this field is the idea that, as Hobson-West⁵ rightly notes, vaccine resistance is a communal activity. Although vaccine resistance and hesitancy is made up of individual acts of refusal or uncertainty, resistance itself is found in the ‘anti-vaccination movements’, as structured social movements as well as contemporary social norms of ‘questioning’ vaccines.⁶ The voices of counter-vaccination can often be heard through the media, particular patient advocacy groups, and public discussions of the harms of immunization. Dew⁷ suggests that narratives surrounding vaccines which run counter to the public health discourse are generally rooted in scepticism of science, and may include: the fact that medical practice is held in suspicion due to inherent uncertainty and iatrogenesis; concerns over the competence, experience, or interest of individual medical practitioners, and; concerns over the side-effects of vaccination. The Council of Europe’s public discussion of the H1N1 vaccine contained elements of each of these common tropes. In particular, concerns over safety and side-effects formed substantial components of the arguments developed by the Council of Europe critics. However, additional arguments – which may also be seen as recurring themes within the counter-vaccine discourse – were also evident in this case.

The narratives that marked the case of the Council of Europe’s criticism of H1N1 vaccines were the following: 1.) Arguments surrounding trust and the decision to utilise mass vaccination as a public health tool in the case of H1N1; 2.) Criticisms of the efficacy of the vaccines themselves, including scepticism of the efficiency of vaccines in general, and the H1N1 vaccine in particular; and 3.) Questions surrounding the safety of these vaccines. Understanding these narratives can lead to a greater appreciation of ways in which the public health community can address vaccine hesitancy.

Trust and Vaccination as an Effective Public Health Response

Scepticism or concern about vaccination is bound in problems of trust and mistrust. At the individual level, as Dew⁷ notes, this involves a particular patient’s trust in their medical practitioner, or in ‘medicine’ as a broader institution. The question of trust was also central to the Council of Europe’s contestation of H1N1 vaccination. In the case of the H1N1 pandemic, the Council of Europe argued that the World Health Organization was responsible for proposing vaccines as a management strategy. Rather than problematising trust in medicine or medical professionals, this case shows the problematisation of trust in public health structures and the World Health Organization.

For the WHO, influenza vaccination was understood as a pivotal public health strategy. Early mistrust in the H1N1 vaccines were regarded by the WHO as a problem given that, as the Special Advisor for Pandemic Influenza and Deputy Director-General Keiji Fukuda stated: ‘vaccines are really one of the prevention methods against infectious diseases which is best in terms of efficacy, [and] the safest’.^8,7 Given concerns that, as one member of the press put it to Marie-Paul Keiny, WHO Director of the Initiative for Vaccine Research, ‘the [H1N1] vaccination campaign could actually create problems for the reputation of vaccines’⁹ the WHO strove to emphasise the safety and efficacy of H1N1 vaccines. The WHO upheld the dominant public health discourse surrounding the efficacy of vaccination.

The criticisms of the Council of Europe actors highlighted the problem of trusting the WHO. It was suggested by Paul Flynn (Council of Europe Rapporteur on the matter of the handling of H1N1), Hancock (representative for the UK), and Wodarg, that the WHO acted in an untrustworthy manner in having ‘cried wolf’^10,11,12 over H1N1, and the ‘credibility’ and ‘accountability’ of the WHO had been undermined by the affair^1,16, which was considered to be just one of ‘a whole series of scares’.¹² These narratives were underpinned by the major political concern that the Council of Europe’s criticisms were addressing – that the mass vaccination campaign had been costly, since as Frahm (representative for Denmark) put it, the WHO’s recommendation had ‘forced countries to spend billions on unnecessary supplies’¹⁰ of antivirals and vaccines.

For the Council of Europe, the WHO’s decisions (and lack of credibility) had been a direct result of influence by pharmaceutical manufacturers. It was argued that the costly vaccination campaign had merely served to profit vaccine makers and that industry was able to ‘directly influence’ public health decisions surrounding H1N1.¹¹ It was argued that there was ‘great commercial pressure’ to manage the H1N1 through the use of vaccines and other pharmaceuticals,¹¹ and that ‘who pays the piper calls the tune’.¹⁶

Scepticism over the motives of key actors – the WHO and the producers of vaccines – was a key narrative. Action surrounding the H1N1 Pandemic reflected the globalised and rapid action surrounding the pandemic threat (as an urgent global problem, rather than scheduled vaccination regimes), and thus centred upon the role of the WHO. However, the issue of trust and accountability is more widely evident in issues of vaccine hesitancy. For instance, the Council of Europe actors’ scepticism was bound in concern of the greed and corruption of vaccine manufacturers. The concept of profit motives undermining the efficacy and safety of vaccines is recurring discourse in debates surrounding vaccine use.¹⁷ Building trust, not just in terms of scientific objectivity but in terms of wider institutional structures, is therefore fundamental to perceptions surrounding vaccination.

The Efficacy of Vaccination

There is now a wide literature within the social sciences suggesting that the perception and management of risk is central to contemporary life at both the societal and the individual level.^18,19 The notion of risk is particularly key to the issue of vaccine hesitancy – here, a lack of vaccine uptake is a choice (rather than a problem of lack of access), and this choice is underpinned by an understanding of the relative advantages and disadvantages of vaccine use. In assessing the benefits of vaccination, questions of efficacy are central. One of the ways in which vaccines are problematized is through challenging notions of efficacy, either at the general level or in regard to a particular type of vaccination. Such narratives of (in)efficacy were central to the Council of Europe actors’ representation of the H1N1 vaccination campaign.

The Council of Europe critics contested the need for administering vaccination against H1N1. The decision to undertake a mass immunisation campaign against the pandemic strain was decried as ‘without sufficient justification’ and unnecessary (Circene, representative for Latvia).¹⁰ This suggestion was reinforced – with the benefit of hindsight – by comparisons between countries that undertook vaccination and those that did not. So for example, it was argued that ‘[t]he country that spent the least was Poland, which rejected the idea that this disease was dangerous and which has suspicions about the safety of the vaccine…’ where, compared the Britain’s comparatively larger spending on pharmaceuticals ‘…the number of deaths per million from swine flu in Britain was about twice the number in Poland’ (Flynn).¹⁰ It was suggested that vaccination was therefore not an effective public health response to H1N1.

In addition to specific criticisms of the efficacy of the H1N1 vaccine, the critics also suggested that vaccination more generally does not act as an efficient public health measure. For example, Tom Jefferson from the Cochrane Institute was called in to provide expert testimony on the case. Dr Jefferson argued that ‘vaccines and antivirals have a weak or non-existent evidence base against influenza’.¹⁴ Such statements undermined the fundamental concept that influenza vaccination is an effective global health action. Likewise, it was argued that ‘the performance of the [influenza] vaccines in healthy adults is nothing to get excited about’ given that ‘we need to vaccinate 100 healthy adults to prevent one set of symptoms’.¹⁴ Other public health measures were described as having ‘a much better evidence base than vaccines’.¹⁴

The strategy of emphasising the lack of efficacy of vaccine use is a key narrative in problematizing vaccination. In the case of H1N1, it was suggested that vaccines were a costly and ineffective strategy against the pandemic. This uptake of narratives serves to minimise the ‘benefit’ aspect of the risk-to-benefit estimate that is central to estimations of the utility of vaccination.

Vaccine Safety

Vaccine hesitancy at the individual level highlights the important role of the relative (perceived) weight of the risk of vaccination to the benefits incurred. Perceptions of the severity of the disease being vaccination against are weighed up against perceptions of adverse reactions to vaccination. Counter-vaccination movements are particularly prone to discourses of risk and uncertainty – vaccines are characterised as unsafe due to the risks of severe or lasting medical consequences. Unlike the short term and acute reactions acknowledged by the medical community, counter-vaccine narratives commonly emphasise long-term and severe reactions to vaccination.

Narratives that problematized vaccine safety were therefore central to the Council of Europe critics’ discussions. It was argued that ‘several independent medical experts raised warnings regarding excessive vaccination…[where]…there was no clinical scientific evidence to justify this’.¹¹ The safety of vaccination was questioned and problematized.

In the case of H1N1, an important point of contention revolved around the novel manufacturing method, which was used, it was argued, due to the concern over quickening production and furthering profits. It was suggested that the vaccines ‘primarily follow[ed] economic strategies and was not to optimise public health needs’.¹⁵ This method, it was argued ‘involved higher risks than usual vaccines…[since]…some adjuvants were added and injected of which we know, that they stimulate the immune system manifold, which means that they could possibly lead to autoimmune diseases (such as multiple sclerosis) and immunological complication’.¹⁵

Several other potential adverse effects were cited. For example the ‘fast growing cancer-like cells’ were highlighted.¹⁵ While such statement were allusions rather than definitive statements, the problematisation of vaccine safety was evident in this account. It is also significant, because while (for example) allusions to the possible carcinogenic nature of the vaccines was not greatly emphasised within the Council of Europe’s hearing on the pandemic, such statements had been mobilised by the media and actors within the anti-vaccination movement,^15,20,21,22 and may therefore inform wider perceptions about the safety of this vaccine and by extension, vaccines more generally.

Conclusions

In order to understand the ways in which individuals make decisions regarding vaccine use, it is important to access the public discourse surrounding vaccination. Such narratives incorporate ideas about vaccinations which, while contrary to medical and scientific viewpoints, underpins the public understanding of vaccines. As such, it is important to see vaccine hesitancy as much a result of public discourse as it is a problem of individual decision-making.

The Council of Europe’s criticisms of the use of vaccines during the H1N1 Pandemic reflect many dominant discourses – lay understandings of vaccination and public representations of vaccination -that may inform vaccine hesitancy. Contestations such as this one, and the ways in which such debates are subsequently picked up by the media, have the potential to significantly shape the public discourse. Simultaneously, this debate mirrors and mobilises common sentiments surrounding vaccines.

Key to the Council of Europe’s account were three issues: the problem of trust in relation to the decision to use vaccines to combat H1N1, the problem of efficacy in terms of vaccines generally and the H1N1 vaccine specifically, and the problem of the risk posed by mass vaccination and the safety of the H1N1 vaccines. Examining the vaccine counter-narratives provides information that may be considered in addressing vaccine hesitancy. Trust building will be central to the task of impacting upon the public debate. Likewise, effective communication of issues of risk and trust – in ways that speak directly to the existing public understanding of vaccines – is also vital. Consequently it is important to acknowledge vaccine hesitancy as a problem not just of the individual level, but critically also of the social.

Competing Interests

The authors have declared that no competing interests exist.

Introduction

Today, according to many public health experts, public confidence in vaccines is waning^1,2,3. Researchers investigating this phenomenon are now abandoning expressions such as “vaccine resistance” or “vaccine opposition”, increasingly replacing them by the new term “vaccine hesitancy” (VH) to describe the spread of vaccine reluctance. According to the Working Group on Vaccine Hesitancy appointed by the World Health Organisation’s Strategic Advisory Group of Experts (SAGE) on Immunisation, VH “refers to delay in acceptance or refusal of vaccines despite availability of vaccination services”, and this phenomenon “is complex and context specific varying across time, place and vaccines” ⁴. Several literature reviews have already been devoted to this issue ^5,6,7,8. Articles using the VH terminology have mainly been published in journals specialised in vaccination or paediatric issues, but also in more generalist journals (Lancet, British Medical Journal, Science).^3,9,10

Despite — or perhaps because of — this success, VH is an ambiguous notion and its theoretical background appears uncertain. It may have originated as a catchy expression coined by experts to capture policy-makers’ attention, as current vaccine coverage rates do not yet reflect the growing reluctance toward vaccination witnessed by empirical researchers. But hasty use of this notion may lead to misunderstandings and ineffective policies if, for example, one considers hesitancy as a necessarily transient state between full support and strong opposition.

In this paper, we first review the current definitions of VH in the public health literature and examine its most prominent characteristics; we also underline some of its ambiguities. We then call into question the usefulness of the common understanding of VH as an intermediate position along a continuum ranging from anti-vaccine to pro-vaccine attitudes, and we discuss its qualification as a belief, attitude, or behaviour. Finally, we propose a theoretical framework related to two different concepts: healthism/risk culture and (dis)trust toward health authorities and mainstream medicine.

The ambiguities of current definitions of VH.

VH definitions in the public health literature.

VH has been defined as a set of beliefs ¹¹, attitudes ^8,12, behaviours ¹³, or some combination of them ^11,12, exhibited by lay people in regard to their own or their children’s immunisations, but also sometimes by healthcare professionals. VH is an attribute ascribed to a large and heterogeneous category ^5,6,7,11 that regroups people who share varying degrees and motives of indecision and who hold an intermediate position along a continuum ranging from full support for vaccination to strong opposition to any vaccine ^5,6,11.

These people are characterised by what we may call reluctant conformism and vaccine-specific behaviours ^5,6,7,11. They may decline a vaccine, but they may also delay it or even accept it in due time despite their doubts/reluctance. In other words, they may endorse a wide range of non-specific behaviours, all of which can result from something else than VH. This behavioural outcome can vary from one vaccine to another: they may accept one vaccine, but decline/delay another, as they base their decision on vaccine-specific features.

A catchall category, not a concept.

Definitions that try to describe VH as it is used by researchers tend to be very broad and to embrace heterogeneous people/situations and many different explanatory factors (including historic, political and socio-cultural contexts, as well as individual/social group influences ^5,6,9). Moreover, some previous empirical studies have found quite contrasting profiles of attitudes among those who could be categorised as vaccine-hesitant ^13,14.

Previous studies also show several contradictions in their use of VH. First, some authors argue that it is something new, distinct from old-fashioned anti-vaccination ^14,15,16, while others state that it is as old as vaccination itself ^6,12,17. Second, some authors consider that VH corresponds to an intermediate position, in the middle of the continuum between the pro-vaccination and anti-vaccination positions (that is, on what we shall refer to as the pro/anti continuum” ^6,7,11 , while others consider that VH includes strong opposition to vaccination ^18,19. Third, authors argue that VH is due to ignorance, misperceptions or disinformation ^20,21, and others that it may result from too much information ^12,17,22. One author even states that VH is driven basically by emotions and irrationality and vaccine refusers should be liable for the harm they cause to others ²³. Fourth, VH is sometimes described with a neutral tone, or even praised ^9,14,24, but it has also been described (metaphorically?) as a “condition” more or less “severe” that should be “diagnosed” among people at risk ^6,25,26 and as a weed deeply rooted in the defects of human nature ²⁰.

Finally, while some empirical studies report that VH is more frequent among people with a high socioeconomic status (SES), others report the opposite or observe no relation, especially regarding educational level ^{6,7,8,12,17,27}. Such inconsistent results are disturbing for social scientists, as SES is supposed to strongly shape our beliefs, attitudes and behaviours, in meaningful ways.

These different attitudes tend to assort into specific profiles; for example, those who consider VH an old phenomenon that encompasses anti-vaccination attitudes often attribute it to ignorance, misinformation or irrationality, while those who describe it as a new attitude, distinct from strong opposition to vaccination, also argue that it is positively correlated with vaccine-related knowledge.

More generally, VH is not really an empirical concept, as the term “concept” traditionally refers to a general mental representation derived from the variety of perceived objects and defines what is common to them —the features necessary and sufficient for membership in the class/concept — through comparison, reflection and abstraction. The current definitions of VH, rather than delineating a set of core elements, cover a wide range of heterogeneous, and even sometimes contradictory, elements.

Two issues raised by the VH definitions: what is VH, and where to position it?

A belief/attitude, a behaviour, or a decision-making process?

It is not fully satisfactory to define VH as a behaviour, as it is associated in the literature with various and non-specific behaviours and outcomes (due to reluctant conformism and vaccine-specific behaviours). Moreover, VH is not the only possible explanation for each of these different outcomes: acceptance might also be due to strong support, refusal to strong opposition, and delay to procrastination, oversight, or ignorance. Nevertheless, VH may be associated with other kinds of behaviours, such as information seeking, and the notion of attitude can be defined in many different ways (including a positive or negative evaluation, or a disposition to act). This ambiguity regarding the nature of VH may create problems in dealing with it: when researchers design an intervention aimed at promoting vaccination or a specific vaccine, for example, should they target an attitudinal or a behavioural outcome?

Nevertheless, beyond this ambiguity, it would be probably more useful to consider VH as a decision-making process (how/why do people come to accept/refuse/delay vaccination) which is influenced by various contextual factors (including “local vaccination cultures” ^28,29) and leads to a variety of behavioural outcomes. From a public health perspective, behavioural outcomes are important targets in terms of prevention. But it is worth studying VH even among people who have not yet refused or delayed any vaccines, because they are more likely to do so in the future, and public health experts would like to prevent that ⁸.

The decision-making process we are referring to may be easy or simple (without hesitancy) or practically automatic amongst both pro-vaccine and anti-vaccine people because they have strong convictions about vaccines in general. On the contrary, this process may be difficult, more uncertain and more worthy of interest among people who have doubts — that is, who are genuinely hesitant. Thus, although VH can be considered to be an intermediate position between the pro- and anti-vaccine positions in terms of vaccine assessment (positive/negative), it is not in terms of the decision-making process. Moreover, a still different group, those with no definite opinion, little knowledge and little interest about vaccination issues and who randomly forget or delay some vaccines, share the same intermediate position on the anti/pro continuum, but they show the same behavioural pattern as people who are uncertain but very interested and committed in vaccination issues, prone to information seeking and long and balanced decision-making.

In other words, the behavioural outcomes generally associated with VH may reflect the genuine inconsistency of uncommitted people, as described above, but may also reflect a decision-making process that is not guided by a general attitude toward vaccination, but that instead takes the specificities of each vaccine/context into account, among people strongly committed to vaccination issues.

VH and the anti/pro continuum.

To a certain extent, keeping VH on the anti/pro continuum is convenient, as VH can be conceived as a temporary attitude of individuals who have not yet chosen between the anti- and pro- attitudes and who can more easily be convinced to endorse the latter than strong opponents ³⁰. One might then hope to help people to move along this continuum through interventions designed to bring them what they lack: self-efficacy, knowledge or trust of the authorities.

Nevertheless, using this continuum to describe VH is not self-evident. First, from a statistical point of view, it is quite odd to choose to describe a population by representing it on an axis where most individuals are supposed to be clumped in an intermediate position. It is usually more informative to use axes that contrast individual positions.

Moreover, that vaccine-hesitant people are neither pro- nor anti-vaccination does not necessary imply that they endorse intermediate attitudes regarding vaccination in general. We can use an analogy with politics to illustrate this point. One may claim that there are hesitant voters: instead of being either leftists or rightists and always voting according to their orientation, they may make an informed choice for each election, depending on the candidates, their election platforms, and the context and territory level: they may choose to vote for a leftist candidate for the municipal election and a rightist candidate for the presidential election, and to stay home from the elections for European Parliament members. Such hesitant voters are neither leftists nor rightists, but claiming they are centrists would be highly arguable. The standard left-right clivage appears irrelevant to describing their behaviour. Similarly, the anti/pro continuum about vaccination may not be relevant for describing VH.

Finally, these people’s attitudes are claimed to be strongly vaccine-dependent, for they may accept one vaccine, be suspicious of another and strongly reject a third. Positioning them along a continuum corresponding to attitudes toward vaccination in general thus appears quite inappropriate.

A theoretical model for VH

The indifference/commitment axis.

As specified above, considering VH a decision-making process helps to distinguish two very different kinds of VH: first, that of people with poor knowledge of and indifference to vaccination issues, and erratic vaccination behaviours, and, second hand, that of people who are very interested and committed to vaccination issues, prone to information seeking and long and balanced decision-making. From a psychological point of view, this axis echoes the notion of locus of control: some people believe that they can control events related to their life (internal locus of control), while others endorse a more fatalistic attitude, tending to believe that their life is driven by forces outside themselves (others, fate or luck: external locus of control) ³¹.

From a sociological point of view, this axis echoes two cultural features of contemporary societies, concepts known as “risk culture” and “healthism”. Risk culture is a concept coined by the British sociologist Anthony Giddens ³². According to him, people in contemporary societies are encouraged to exert autonomy over their own lives, to use available expert knowledge to stay continuously aware of risks and opportunities in their daily life, to assess risks and benefits in order to make their future secure. Authorities promote risk culture, as it is easier to govern rational and autonomous individuals, whose rationality makes them more predictable ³³. This is especially true concerning health, which has become a super value: the rhetoric of self-empowerment conveyed by health promotion praises enterprising and entrepreneurial individuals who exercise control over their own behaviours and use information spread by health authorities to maximise their life expectancy. This specific cultural feature is described as healthism ^34,35. Thus the indifference/commitment axis can also be viewed as measuring the extent to which individuals are committed or indifferent to contemporary healthism.

The link between healthism and VH is quite obvious in several studies. Gilkey et al. ²⁶ observed that forgoing vaccines was more common among parents more attentive to their children’s health and nutrition, and others underline the weight of rational assessment and the importance of perceived control among people who were reluctant to be vaccinated against the H1N1 influenza ^16,27. Moreover, when Opel et al. ¹¹ built a questionnaire designed to identify VH, they not only used existing items but also conducted focus groups to create new items. Because parents frequently claimed that they prefer to rely on their own research on vaccines to come to an informed decision, rather than deferring to their child’s doctor, the authors added the following item: “It is my role as a parent to question shots”. We believe this item captures an aspect of commitment to risk culture. Conversely, and rather remarkably, parents’ reluctance to get their child immunised has been used as a typical example to illustrate contemporary healthism ³⁶.

The trust issue.

According to Giddens, contemporary individuals are exhorted to become the “entrepreneur” of their own life, but they must do so in a context characterised by trust issues, as many — if not all — aspects of our daily lives depend on machines or systems that are distant from us and beyond our understanding. Giddens’s analysis is based on a concept of trust borrowed from the psychologist Erik Erikson: depending on people/things that are not under our direct scrutiny or not fully understandable to us induces anxiety, and we must trust them, trust a whole expert system, through a leap of faith. As our societies are characterised by overspecialisation and the disembedding of social relationships, trust issues become essential ³². Moreover, in Giddens’s perspective, the contemporary controversies regarding vaccination or other health-related issues are not the causes of distrust, but only consequences of a wider structural phenomenon.

Trust issues are also crucial in Beck’s analyses of contemporary risk societies, especially regarding science and knowledge. According to him, our societies are characterised by reflexive scientisation: scientific scepticism has been extended to science itself and fuelled the disenchantment of science. As a result, there is a process of demonopolisation/feudalisation of scientific knowledge, with conflictual equalisation tendencies in the gradient of rationality between experts and lay people. Sciences, quasi-sciences and pseudo-sciences are competing sources that produce a flood of overspecialised, hyper-complex and contradictory findings. Consequently, distrust toward science is no longer a sign of ignorance or even obscurantism, but is endorsed by highly educated individuals ³⁷. Beck also pointed out the increasingly important issue of conflicts of interest, i.e., situations in which scientists or experts are perceived as untrustworthy because of their financial links to industries. In this context, people who endorse risk culture and decide to take their health in hand are confronted with discordant sources of knowledge: they may distrust “official” sciences and experts, and put their faith in “alternative” sources of information or medical practice (such as homeopathy or acupuncture).

Vaccination-related issues have not escaped from these structural features of contemporary societies, especially the crisis of legitimacy faced by science, expertise and medical authorities. Vaccination may involve trust as a leap of faith, experienced through relationality and familiarity with a physician [5,38]. An annual survey conducted by the IRSN (Institute of Radiation Protection and Nuclear Safety) illustrates this crisis of legitimacy; it found that, generally speaking, the French people do not trust the way authorities manage various kinds of risks, nor do they trust the information given to them. For example, only 38% of the French had confidence that what authorities did about the H1N1 episode in 2009 was for their safety, and only 34% believed that the information released was true. ³⁹

Trust is generally considered as a crucial component of people’s attitudes toward vaccination, including VH ^5,7,8,16,40. For example, trust is a key dimension in the questionnaire developed by Opel et al to assess VH ¹¹. More precisely, lay people may not distrust vaccines per se, but rather distrust the health authorities who are believed to be strongly influenced by vaccines producers ^8,16. This feature of contemporary societies is closely related to healthism, and some authors have even combined these concepts: in such cases, healthism refers to individuals who seek to control their (children’s) health, who want to become its informed and rational entrepreneur, but who also express strong doubts about medical authorities and mainstream medicine and are more prone to turn to alternative experts, including on vaccination issues ³⁶. This relation between empowerment and distrust is also explicitly promoted by some groups critical of vaccines, which claim that “trusting blindly can be the biggest risk of all” ⁴¹. Moreover, several previous studies have already found a positive correlation between VH and use of alternative medicines (such as acupuncture, homeopathy or naturopathy ^16,17,40 ) , as well as distrust of colon cancer screening ¹⁴.

VH in a two-dimension map.

Thus we propose to add to the risk culture/healthism axis a second axis, assessing lay people’s attitudes toward health authorities and mainstream medicine (see Figure 1).

These two axes can be used to represent different types of VH. For example, in their study of major motives for non-acceptance of the A/H1N1 flu vaccine, Velan et al. ²⁷ found several contrasting profiles, including people whose motives suggested passiveness, inaction and dependence (“I did not think about it”, “I somehow did not manage to do it”…), corresponding here to the lower-left quadrant (erratic VH), and people who made their decision after a process of reflection (“after some deliberation I have decided not to do it”, “I realised that the disease is not serious, that it is not spreading”), corresponding here to the lower-right quadrant. Specific views regarding VH could also be positioned here: for example, in Marshall’s view ²⁰, VH is due to a lack of faith in authorities, combined with misperceptions, emotion-driven reactions, and gullibility toward rumours spread by anti-champions and celebrities, corresponding to the lower-left quadrant.

This map also underlines that although health promotion policies aiming at encouraging people to take their health in their own hands may move people further along the horizontal axis, health promotion may nonetheless fuel VH, at least among some populations, unless they are positioned high on the trust axis.

Nevertheless, talking about vaccine hesitant people may be a misuse of language, as VH also strongly depends on vaccine-specific factors; thus specific vaccines, rather than individual profiles, could be also positioned along our two axes. In other words, instead of considering whether or not people are vaccine-hesitant, we should consider whether a specific context/vaccine fuels their propensity to VH. For example, people are probably more likely to endorse an active attitude, seeking information and assessing risk and benefits, when they are confronted with new vaccine, such as the H1N1 or the HPV vaccines, while they may be more prone to follow their physician’s advice routinely and passively for some childhood vaccines or that against seasonal influenza. Moreover, the level of confidence in health authorities about any specific vaccine obviously depends on the extent of media coverage of existing controversies regarding its potential side effects. In the UK, for example, the MMR vaccine would have been positioned in the upper-left quadrant before the MMR/autism controversy began, along with the vaccine against seasonal flu. On the contrary, the HPV vaccine could be considered as relatively new and less controversial (upper-right quadrant), while the H1N1 vaccine was both new and controversial (lower-right quadrant) ¹⁵.

Conclusion

In this paper, we have discussed some of the ambiguities and contradictions of the notion of vaccine hesitancy. We have argued that it is currently more a catchall category than a real concept. This lack of consistence is likely to hamper both research and interventions. Therefore, as a supplement to the previous work carried out by the SAGE working group, we propose grounding the notion of vaccine hesitancy in an explicit theoretical framework that takes some major structural features of contemporary societies into account. We consider VH to be a kind of decision-making process that depends on people’s level of commitment to healthism/risk culture and on their level of confidence toward health authorities and mainstream medicine.

This framework abandons the anti/pro vaccination continuum. We do not claim here that the vaccine-hesitant do not have opinions about vaccination in general, nor that such opinions do not influence their behaviours toward a specific vaccine. Nevertheless, we believe that these general opinions are not a key determinant of their vaccination behaviours, especially in comparison with the two other dimensions discussed here.

We also believe our approach opens new avenues for research on VH. For example, it would be useful to consider various kinds of VH that may be correlated to individuals’ socioeconomic status (SES), as the social differentiation of health behaviors may reflect the social differentiation of health-related cognition, including knowledge, attitudes and beliefs ⁴². Erratic VH is more likely to be displayed by people with low SES, while rationalised VH may be more frequent among the educated middle classes ⁴³.

Finally, as even highly educated people may show VH, we should not focus only on lay people. We should also study extensively VH among health professionals, and especially among general practitioners, who still play a key role in promoting vaccination, and who also display some kinds of VH ^5,8,17. We should also study their interactions with their patients. In some cases, health professionals may fuel patients’ VH (directly, when homeopaths and naturopaths express convincingly their doubt regarding vaccination to their patients ⁴⁰, or indirectly, when pro-vaccine physicians refuse to accept into their practices families who are reluctant to vaccinate their children ²⁵), but sometimes vaccine-hesitant patients may raise doubts in their physician’s mind ³⁸.

More generally, we should study the interactions between the various participants involved in immunisation policies, from public health experts to lay people: is there a ‘hesitancy cascade’, with waves of influences from political hesitancy to provider hesitancy to public hesitancy, and is there a feedback effect in some cases (patients’ VH reinforcing physicians’ VH, which in turn fuels VH among other patients)?

Competing Interests

The authors have declared that no competing interests exist.

Competing Interests

The authors have declared that no competing interests exist