From May 2014 onwards the community of El Carmen de Bolivar, a municipality on the Caribbean Coast of Colombia, was hit by a mysterious outbreak with a very specific target: female teenagers. The symptoms, that from their first manifestation affected a growing numbers of girls, were general weakness, fainting, headaches, tachycardia, numbness in the extremities, dizziness and sudden paralysis. Since the symptoms first appeared, scientific studies and different explanations have claimed legitimacy (Martinez et al. 2015; Olivero Verbel et al. 2018; El Colombiano 2015).

The local community blamed the human papilloma virus (HPV) vaccine previously administered. The Government, supported by an investigation conducted by the Colombian National Health Institute (INS) and the Secretary of the Department of Bolivar (Martinez et al. 2015), concluded that it was a case of collective suggestion, referring to it also as mass hysteria. Two reports were produced, and both of them used epidemiological evidence to support the psychogenic explanation.

The controversy between the local community and the Government became an increasingly heated conflict. The latter used science, evidence and rationality as its flags, defending the narrative of the psychogenic reaction on the basis of the available scientific evidence. The former counterattacked, referring to the girls’ bodily symptoms, and the scientific literature related to autoimmune diseases (Beppu et al. 2017, Brinth et al. 2015, Anaya et al. 2015). Following events through the media, the dispute appears as a battle of “professional” vs “experiential” knowledge (Soler 2014; Fog Corradine, 2018). Currently, some of the girls affected by the symptomatology have improved, some keep having the crises (Mezza 2019, 36), whilst some have become worse. Four of them have died.

According to the community these deaths are a consequence of the symptomatology caused by the vaccine (Anaya Garrido 2018). The girls and their families blame the State and the scientific community for covering up the truth and for leaving them without support. At the same time, State officials complain because, according to them, whilst scientific evidence proved that the symptomatology was not due to the vaccine, the national HPV vaccination rate has dropped. They largely attribute this to the events in El Carmen de Bolivar and the struggles conducted by the community (Benavides and Salazar 2017).

This controversy is the subject of the Master thesis in Medial Anthropology and Sociology. I completed under the supervision of Emeritus Professor Stuart Blume at the University of Amsterdam, an overview of which follows below.

The events described above are an emblematic case in debates surrounding HPV vaccines such as the relationship between vaccines and governance (Wailoo et al. 2010), issues related to vaccine hesitancy and supposed HPV vaccines adverse reactions (Kinoshita et al. 2014; Brinth et al. 2015; Prasad 2017), and lie upon an intricate network of tensions formed where different social science literatures meet (to explore this theme see Mezza 2019, 14).

In this research I turn attention towards the practice of epidemiology and how it approaches subjects and their symptoms. Relying on Critical Epidemiology and Illness Narratives approaches, my aim is to listen to the subjects’ illness experiences, questioning how these were synthetized by epidemiology.

I conducted three months of fieldwork in Colombia, during which I collected the girls’ experiences, confronting what they told me with what emerged from the epidemiological study, as well as the public health officials’ experiences and perspectives.

I found that those symptoms most important to the subjects who manifested them were not explored in the epidemiological report. On the contrary, the outbreak study focused on other characteristics of the population. Who decides which fragments of a phenomenon are relevant? How are the salient features of a symptomatology selected?

Public health designated the field of epidemiology to be its “diagnostic arm” (Breilh 2008, 745). Even though different paradigms took turns throughout the history of epidemiology (Arias-Valencia 2018, Breilh 2008), empiricism and positivism became the hegemonic ontological and epistemological premises of “mainstream epidemiology” (Almeida Filho 1992). The INS epidemiologists, who were in charge of researching the mysterious symptomatology, relying on this culture of expertise as well as on social, cultural, and personal assumptions, made methodological choices that foregrounded selective fragments of the phenomenon, hiding others. The outbreak study (one of the reports produced by the INS) concluded that the symptomatology was of psychogenic nature, recommending further research (Martinez et al. 2015, 42). This study was used nationally and internationally to invalidate the girls’ and their families’ claims in the name of the scientific evidence (Larson 2015).

However, in line with a constructivist approach to scientific knowledge, it is possible to unpack this scientific evidence showing that biases, material conditions and ontological premises influenced its production. Scholars from different disciplines (Foucault 1976, Good 1977, Kleinman 1988, Young 1982) have addressed how individual and socio-cultural perspectives, as well as social forces and obstacles, come into dialogue with the hegemonic biomedical gaze, which works “in harmony with a political model that follows its own particular economic rationality” (Masana 2011, 145).

Double reductionism and the influence of a hierarchical data production

In order to discover the symptoms etiology, the INS epidemiologists created a protocol oriented toward the falsification of hypotheses previously formulated by the Secretary of Bolivar and the description of the symptomatology using the time, space and population variables. All the data processed by epidemiological operations were retrieved from the clinical histories and institutional records, “because what count for us is the doctors perspective” (Interview 3). According to critical epidemiology, epidemiological protocols are already a symbolic operation, which, in this case, elaborate already processed data. In fact, while the epidemiologists consider the clinical histories’ “objective data” (interviews 1,2,3), different perspectives highlight their partiality and reductionism.

The Illness Narrative approach has broadly discussed the meanings and nuances lost in the biomedical effort to recast the illness experience into biomarkers, measurable findings and biological alterations (Kleinman 1988), as well as the epistemic invalidation of the experiential knowledge this operation implies (Blume 2016, Dumit 2006, Borkman 1976). In El Carmen de Bolivar the girls were silenced, their experiences neglected and their knowledge excluded from the investigation dedicated to assessing the reality. Additionally, in this double reductionism the influence of contextual conditions, forces and obstacles on both the clinicians and the epidemiologists were ignored, making their partial perspective appear objective and neutral. According to conventional epidemiology, epidemiological protocols, relying on objective data such as clinical histories is seen as a guarantee towards working with bias-free data and keeping researchers’ personal histories and assumptions aside. However, the choice to use clinical histories as unique sources such as via the claim for the objectivity and neutrality of the medical gaze, and the invalidation of experience as source of knowledge, are already operations rooted in specific assumptions. Together with the reductionist approach the understanding of social and historical processes as descriptive individual variables shift the research focus onto some (subject) dimensions that open the path to victim blaming findings. Echoing critical epidemiology authors (Breilh 2008, Almeida Fhilo 2007, Samaja 2004), I argue that what comes to the fore and what disappears is expression and reproduction of the power relations of a society and its exclusions (Bourdieau 1979, Mitchell 2002).

Following this argument, the collective hysteria diagnosis has to be framed together with the double reductionism that produced it, but also in relation to social and cultural hierarchies between the researchers and the researched, which influences data production.

In fact, the hierarchical relation between the researchers (who came from Bogotá) representing the State, and the population composed of young women from a rural periphery, famous for the violence it suffered through the internal conflict, should not be dismissed.

Which role does the center-periphery relation have in the selection epidemiologists made amongst the historical features relevant for describing the population? As one of the researchers told me, they started reviewing the recent history because in their imaginary El Carmen de Bolivar was linked to violence and massacres. Additionally, it cannot be dismissed that between the two competing narratives, the vaccine adverse reaction vs the psychogenic reaction, the latter is the one that served public health needs, as well as political and economic interests, discharging the responsibility for the symptomatology on the girls and their families.

A similar dynamic was addressed by Goldstein and Hall (2015), who analyzed the case of teenagers diagnosed with collective hysteria in rural USA. The authors showed how the mass hysteria explication withdrew attention from accountability, relying on and reinforcing gender, age and class stereotypes (641). In El Carmen de Bolivar, societal ideas about peasants, female adolescents, and victims of the internal conflict “did their part in making Freud palatable” (ibid., 647).

Several bodies of considerations stem from this research. The first regards the fields of epidemiology and public health. I argue that it is urgent for epidemiology to bridge the gap between epidemiological practices and the subject of its studies, questioning the relationship subject-object. If, on the one hand, I hope conventional epidemiology will question its premises and methodologies to involve different sources of knowledge, on the other hand, I hope public health will start relying on other fields of knowledge in the attempt to grasp populations’ experiences, and to manage health interventions and policies. Likewise, I hope that questions regarding reflexivity and positionality will become part of the epidemiological practice. Additionally, I hope that further investigations will address vaccine hesitancy, questioning how science and public health approaches it, as well as from which standpoint the professionals’ answers and questions emanate.

Another body of considerations specifically regard the events of El Carmen de Bolivar, where the dispute is still burning. I argue that a new and more inclusive research is needed, in which the girls’ illness experience is recognized and framed together with the results of their blood exams and other biological tests. The data collected by the parents’ associations and the knowledge they have gained over these years of struggle should not be neglected. Which conclusions could research that includes the subjects’ experience as source of knowledge draw? Considering that some diseases can be invisible to the biomedical gaze (Ware and Kleinman 1992), would it affect the results of future research?

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Photo: “HPV Vaccination in Sao Paulo Brazil March 2014” by Pan American Health Organization PAHO

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