Entrance door to the infectious and parasitic diseases wing. Image by author.
Luiza is a pediatrician and researcher specializing in infectious diseases who works at a teaching hospital in Recife, Brazil. Her daily routine involves treating children with congenital infectious syndromes, which can lead to various clinical conditions including microcephaly. However, in October 2015, an unprecedented situation unfolded. As she described during an interview with me, “That year, a new world entered my world.” She was referring to the surge in cases of microcephaly that puzzled Brazilian doctors and health authorities that year. In Recife, where the average number of microcephaly cases historically stood at nine cases per year, there were twelve cases registered in just one maternity ward within a month.
To complicate things, no one knew the cause of that microcephaly. Usually, congenital microcephaly is related to what is known in medicine as STORCHs (syphilis, toxoplasmosis, rubeola, cytomegalovirus and herpes), but, as Luiza shared with me, all blood tests came back negative for these infections. Almost ten years after the mysterious microcephaly outbreak, the scientific community has come to the consensus that the phenomenon was linked to Zika Virus, a pathogen that had been identified in the country a few months earlier that year (Diniz, 2016). Microcephaly became understood as one symptom of a much larger syndrome: the Congenital Zika Syndrome (CZS). Though often transmitted through the bite of the Aedes aegypti mosquito and during pregnancy, Zika can also spread through body fluids such as semen.
At the time, none of this was known and the phenomenon sparked great fear. The number of children being born with the mysterious microcephaly kept growing, and Luiza remembers how her office became filled up with babies with microcephaly and their worried and distressed mothers. The families had many questions that neither Luiza or anyone could answer: “My colleagues and I felt very pressured by what was happening and we started to investigate.” Like her, many other people also started to do research. The situation was scary and developing into a public health emergency, which was later jointly declared by the Brazilian Ministry of Health and the World Health Organization. This, coupled with the funding wave directed to Zika-related research, led to what one of my interlocutors called a “scientific rush.” Since Recife was the first epicenter of the epidemic, it also became the epicenter of science making. Just in 2018, there were more than a hundred projects related to Zika happening in the city (Simas, 2020). This scientific rush is the main concern of the research project I participate in at the University of Brasília, called “An anthropology of the Zika Virus Science.” In this project, we have a team of undergrad and graduate students and our investigation focuses on Recife, where we conducted 93 structured interviews with scientists from different specialties who were involved in studying this intense epidemic. This project has several objectives, such as:
- Mapping which areas of knowledge and research centers were involved in the response to the epidemic in Recife
- Understanding the motivations for designing the studies
- Comprehending how they were structured, the teams assembled, partnerships established, funding and ethical approvals sought
- Comprehending how participants were recruited and monitored, and how data were constructed or collected in terms of methodological, technical, and ethical aspects
Today, however, I would like to share some of our interlocutors’ accounts on how their local experiences with the Zika epidemic have impacted their scientific practice more broadly, namely, how it made them more reflexive about knowledge production and science making. For many of the doctors and medical researchers we met, the Zika epidemic entailed “a different type of research.” Conducting research during an epidemic presented unique challenges, including high demand for answers and resolutions, new funding opportunities, and the formation of new networks. Among these traits, there are two major particularities in our interlocutors’ experiences as researchers during that epidemic: its novelty and its urgency. Let’s begin with the novelty.
As the link between Zika and the microcephaly outbreak strengthened, scientists faced another issue. They were also dealing with a new diagnosis, or a new “nosological entity,” as they called it. This new nosological entity became stabilized as the ZCS, but no one knew anything about it. It was scary and completely unknown. As Luiza explained, “We were completely disoriented. We didn’t know how to treat, what to expect, what to tell the families. There were no guidelines for it. No golden standard, nothing.”
As Naomi, a gastroenterologist, explained, the novelty brought uncertainty. Naomi and her team had to constantly rethink and replan their approaches. For instance, she shared a practical case concerning the formula of milk for children diagnosed with CZS. Initially, they relied on literature related to cerebral palsy. However, they observed that children with Zika were gaining weight rapidly. “We realized we had made a mistake. We had to redo everything, recalculate everything,” she recounted. There was also a fear of error: “Are we doing it right? Is this really it?” she pondered. This intense encounter with the unknown demanded a reevaluation of methodologies and sparked new dialogues with the literature. These uncertainties and doubts prompted re-thinking, reflecting, and re-doing.
As STS scholars have demonstrated, this is inherent to the scientific process. Scientific knowledge production constantly grapples with uncertainty, although scientists themselves may not always emphasize this contingent nature. During the Zika epidemic, this uncertainty became especially evident, even within traditionally more concrete fields like epidemiology. It had an impact on how “our” scientists were seeing and perceiving the construction of knowledge. It was stimulating reflexivity regarding their own practices—and certainties.
But beyond the novelty, which required a certain reflexivity driven by the encounter with the new and the unknown, urgency also brought some moments of reflexivity to the forefront. As Sarah, an epidemiologist, had told us firmly, “Look, this project had urgency. There was urgency to try to explain, to try to understand what was happening. It was something localized here, in a low-income population, in a very vulnerable population that we couldn’t explain.” By “living through a real-time epidemic,” Sarah started to rethink her role and responsibility as a scientist. The urgency sparked greater commitment and reflections in Sarah.
Such urgency also played a significant role in justifying research. The “need for response” and the lives of the children born with the new syndrome were strong motivations for conducting research at that time. As mentioned, substantial funding was allocated to it, and Institutional Review Boards expanded their teams to efficiently evaluate the numerous projects being submitted. Urgency became a crucial factor in fostering the proliferation of research across various disciplines. Given that CZS presented with diverse clinical manifestations, experts from various specialties, along with numerous students—including myself and my team—began actively searching for children diagnosed with CZS. This sense of urgency compelled many scientists to focus their efforts on investigating the same phenomenon. Consequently, this “scientific traffic” exposed several researchers not to “golden standards” but to “other standards,” involving different scientists, specialties, methodologies, and objectives. An otolaryngologist we met found her Zika research experience radically different from any other because she never had to speak, discuss, and debate so much outside her own specialty.
For her, this encounter between fields and increased exposure to new practices prompted a cognitive shift—an elucidation through difference and alterity. As she saw other types of ways of producing knowledge and conducting research, she rethought her own. As she explained, the Zika epidemic articulated new networks, bringing into dialogue specialists who had never crossed paths, in the name of “urgency.” She says this encounter was a “huge gain,” that there was constant learning and reflection through exchange and conversation with other specialties. However, these interdisciplinary encounters were not always harmonious. Within this scientific race to respond, many of the encounters between scientists were collisions—true competitions for “scientific data” that also forced them to evaluate themselves through each other, whether inspirationally or confrontationally.
But I would also like to draw attention to the fact that this exposure to other scientific practices didn’t just happen through scientists bumping into each other during urgent times. These collisions and competitions necessarily involved the bodies of research participants. Science conducted during health crises, like Zika and COVID, also share this in common: they involve clinical aspects, research with and on human beings, i.e. subjects who “talk back” (Epstein, 1996) and who respond, question, feel pain and discomfort, and have expectations and frustrations.
During such outbreaks, scientists often hustle to recruit research participants. For Zika syndrome, these participants were often children diagnosed with CZV experiencing exhaustion and pain. These kids, historically underserved by healthcare, suddenly found themselves in high demand for research. But it wasn’t just one type of specialist seeking them out—it was a whole range. The result was a massive influx of research, including extensive blood draws, MRI scans, uncomfortable fasting, and X-rays on these children. All this testing, done in large quantities, underscored the impact of the intersection between science and research subjects. Their mothers, witnessing this entire process, played crucial roles as vocalizers and evaluators of the various scientific practices affecting their children. They challenged the scientists and, in many instances, held them accountable. This experience made some of the researchers we knew reassess their own practices, research, and methodologies. So, aside from reevaluating their practices by bumping into other types of research, some of our interlocutors also went through a reassessment prompted by the insights of the families directly affected by the epidemic.
This intense interrogation of research subjects was a fundamental motivator for reflection for some of these researchers. For example, a physiotherapist declared that one of the greatest legacies she sees in the Zika epidemic is precisely a certain care for the research participant—a recognition of the importance in listening to them, in stepping away from the “top-down evidence,” in valuing not only numbers but also contact, touch, and relationship. For this researcher, being a scientist during the Zika epidemic made her much more reflective about the outcomes of science and its returns for the population. Throughout her master’s research, this researcher faced many refusals from the mothers of children with Zika. And she heard from these mothers many justifications for these refusals, many of them fiercely critical of how science was intersecting with their lives and how science was being conducted. The impressions and criticisms woven by these mothers regarding the conduct of Zika science reflected in how this researcher conducted her own practices. They provided a new angle for her scientific endeavors.
In this piece, I’ve aimed to illustrate how the emergence of novelty, unprecedented circumstances, and the urgent need for answers—typical traits of epidemics and pandemics—have locally fostered encounters among a diverse array of individuals. These encounters and associations brought together multiple, and also conflicting, constructions about what the goals and consequences of science are, as well as what elements make for “good science.” Looking ethnographically into the insights these scientists had—with each other, with the mothers, with the children—may help us think about what could have been done better and consider scientific endeavors in broader, more reflexive ways, especially in “urgent and novel times.”
References
Diniz, Debora. Zika: Do sertão nordestino à ameaça global. Rio de Janeiro: Civilização Brasileira, 2016.
Epstein, Steven. “The Rise of ‘Recruitmentology’: Clinical Research, Racial Knowledge, and the Politics of Inclusion and Difference.” Social Studies of Science, v. 38, n. 5, pp. 739-770, 2008.
Simas, Aissa. Ciência, saúde e cuidado: Um estudo antropológico sobre a pesquisa clínica no contexto da epidemia do Zika (Recife/PE. Trabalho de Conclusão de Curso, Universidade de Brasília, 2020.
