Logo della Fondazione Giannino Bassetti

FONDAZIONE GIANNINO BASSETTI

Innovation is the ability to achieve the improbable

Intestazione stampa

Focus

Temi in evidenza, a cura della Redazione

Home > Focus > What do epidemiologists do? Investigating a controversial symptomatology in Colombia

What do epidemiologists do? Investigating a controversial symptomatology in Colombia

by Maurizia Mezza [1], 5 November 2019

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 [2]. 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?



Bibliography


Almeida Filho, N. (2007). Por una epidemiología con (más que) números: cómo superar la falsa oposición cuantitativo-cualitativo. Salud colectiva, 3(3), 229-233.

Almeida Filho, N. D. (1992). A clínica e a epidemiologia. In A clinica e a epidemiologia.

Anaya, J. M., Reyes, B., Perdomo-Arciniegas, A. M., Camacho-Rodríguez, B., & Rojas-Villarraga, A. (2015). Autoimmune/auto-inflammatory syndrome induced by adjuvants (ASIA) after quadrivalent human papillomavirus vaccination in Colombians: a call for personalised medicine. Clinical and experimental rheumatology, 33(4), 545-548.

Arias Valencia, S.A. (2018). La Epidemiología como campo transdisciplinar pertinente de la salud de las poblaciones. El caso de la Epidemiología en la Facultad Nacional de Salud Pública de la Universidad de Antioquia, 1970-2016. Ph.D thesis in Public Health. Medellin, Colombia

Benavides, M., & Salazar, L. (2017). Razones que pueden explicar la reducción en la cobertura de vacunación contra VPH en Colombia. CES Salud Pública, 8(1), 82-93.

Beppu, H., Minaguchi, M., Uchide, K., Kumamoto, K., Sekiguchi, M., & Yaju, Y. (2017). Lessons learnt in Japan from adverse reactions to the hPv vaccine: a medical ethics perspective. Indian J Med Ethics, 2, 82-88.

Blume, S. (2016). In search of experiential knowledge. Innovation: The European Journal of Social Science Research, 30(1), 91-103.

Borkman, T. (1976). Experiential knowledge: A new concept for the analysis of self-help groups. Social service review, 50(3), 445-456.

Bourdieu, P. (1979). Symbolic power. Critique of anthropology, 4(13-14), 77-85.

Breilh, J. (2008). Latin American critical ('social') epidemiology: new settings for an old dream. International Journal of Epidemiology, 37(4), 745-750.

Brinth et al. (2015) Orthostatic intolerance and postural tachycardia syndrome as suspected adverse effects of vaccination against human papillomavirus: Vaccine; 10.1016

Dumit, J. (2006). Illnesses you have to fight to get: Facts as forces in uncertain, emergent illnesses. Social science & medicine, 62(3), 577-590.

El Colombiano (2015) Vacuna del vph no causo enfermedad en niñas del Carmen de Bolivar según estudio. Available here [3]

Fog Corradine, L. (2018, November 27). Vacuna contra el VPH, entre el rumor y la evidencia científica. El Espectador. Retrieved August 6, 2019, here [4].

Foucault, M. (1976) The Birth of the Clinic: an Archaeology of Medical Perception. London: Tavistock.

Goldstein, D. M., & Hall, K. (2015). Mass hysteria in Le Roy, New York: How brain experts materialized truth and outscienced environmental inquiry. American Ethnologist, 42(4), 640-657.

Good, B. J. (1977). The heart of what's the matter the semantics of illness in Iran. Culture, medicine and psychiatry, 1(1), 25-58.

Kleinman, A. (1988). The illness narratives: suffering, healing, and the human condition. Basic books.

Kinoshita, T., Abe, R. T., Hineno, A., Tsunekawa, K., Nakane, S., & Ikeda, S. I. (2014). Peripheral sympathetic nerve dysfunction in adolescent Japanese girls following immunization with the human papillomavirus vaccine. Internal Medicine, 53(19), 2185-2200.

Martìnez, M. Estevez, A. Quijada, H. Walteros, H. Tolosa, N. Paredes, A. Alvarez, C. Armenta, A. Osorio L. Castillo, O. De la Hoz, F. (2015, February). Brote de evento de etiologia desconocida en el municipio de El Carmen de Bolìvar, Bolìvar, 2014. Informe Epidemiologico Quincenal Nacional. 20(3-4), 42-77 Retrieved July 30, 2019, here [5].

Masana, L. (2011). Invisible chronic illnesses inside apparently healthy bodies. In Fainzang, S. Haxaire, C. (Eds.). Of Bodies and Symptoms. Anthropological Perspectives on their Social and Medical Treatment.127-151

Mezza, M. (2019). What do epidemiologists do? Investigating a controversial symptomatology in Colombia. Matser thesis. University of Amsterdam

Mitchell, T. (2002). Rule of experts: Egypt, techno-politics, modernity. Univ of California Press.

Olivero Verbel, J. Pomares, F. Manjarres, A. Valdelmar, J.C. Sierra, L. Coronado, N. Galvis, J. (2018) Evaluacion de los efectos del proceso de vacunación contra el virus del papiloma humano en adolescentes de Bolivar. Universidad de Cartagena

Prasad (2017). A second chance for the HPV vaccine. The hindu. Available here [6].

Samaja, J. (2004). Epistemología de la salud. Buenos Aires: lugar editorial.

Soler, J. D. (2014, September 4). Una vacuna puede curar, la ignorancia no. El Tiempo. Retrieved August 6, 2019, here [7].

Wailoo, K. Livingston, J. Epstein, S. Aronowitz, R. (2010) "Conclusion: Individualized Risk and Public Health: 'Medical Perils, Political Pathways, and the Cultural Framing' of Vaccination under the Shadow of Sexuality", In Wailoo, K. Livingston, J. Epstein, S. Aronowitz, R. (eds, 2010), Three shots at prevention : the HPV vaccine and the politics of medicine's simple solutions. The Johns Hopkins University Press, 293-303

Ware, N. C., & Kleinman, A. (1992). Culture and somatic experience: the social course of illness in neurasthenia and chronic fatigue syndrome. Psychosomatic medicine, 54(5), 546-560.

Young, A. (1982). The anthropologies of illness and sickness. Annual review of anthropology, 11(1), 257-285.

-------------------

Photo: "HPV Vaccination in Sao Paulo Brazil March 2014 [8]" by Pan American Health Organization PAHO

-------------------

Show/Hide links in this document

Links in this document:

  1. 1] /schedabiografica/Maurizia Mezza
  2. 2] https://www.academia.edu/40529959/What_do_epidemiologists_do_Investigating_a_controversial_symptomatology_in_Colombia
  3. 3] http://www.elcolombiano.com/colombia/salud/vacuna-del-vph-no-causo-enfermedad-en-ninas-del-carmen-de-bolivar-segun-estudio-YD1027177
  4. 4] https://www.elespectador.com/noticias/salud/vacuna-contra-el-vph-entre-el-rumor-y-la-evidencia-cientifica-articulo-826021
  5. 5] https://www.ins.gov.co/buscador-eventos/IQEN/IQEN vol 20 2015 num 3_4.pdf
  6. 6] https://www.thehindu.com/sci-tech/science/cervical-cancer-vaccination-for-delhi-and-punjab-lessons-from-andhra-and-gujarat/article19796877.ece
  7. 7] https://www.eltiempo.com/archivo/documento/CMS-14486730
  8. 8] https://flic.kr/p/moGaSC
CC Creative Commons - some rights reserved.
What do epidemiologists do? Investigating a controversial symptomatology in Colombia
Articles by:  Maurizia Mezza
Articoli
Search by:
Search video by:

- Mailing list Subscription - Cookies Policy -

RSS Feed  Valid XHTML  Diritti d'autore - Creative Commons Gruppo Fondazione Giannino Bassetti in Facebook Gruppo Fondazione Giannino Bassetti in Linkedin Segui la Fondazione Giannino Bassetti in twitter

p.i. 12520270153