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At the height of the West African Ebola epidemic, West African governments and Mobile Network Operators (MNOs) were barraged with requests from international humanitarian and Western data analytics agencies to provide Call Detail Record data. This data could furnish the large-scale ambitions of data modelling to track and predict contagion. Despite its utility in tracking mobility and, as such, disease, CDR’s use raises many privacy concerns. In addition, embedded within a turn towards datafication, CDR technologies for surveillance embed specific ontologies of the data-focused society they emerge from. There is a false equivalence embedded in the relationship between humans and technology. The predominantly Western idea that one phone equals one person underlines the claim that CDR data accurately tracks distinct user movements, encoding a Western “phone self-subjectivity” (Erikson 2018). However, the refusal by some African actors to hand over sensitive mobile data to international agencies was met with forceful rhetoric of Africa’s moral obligation to comply—to forgo privacy rights in the name of ‘safety.’ The Ebola context reflects an emergent digitization of emergencies in the Global South, which is reshaping the way societies understand and manage emergencies, risk, data, and technology. The big data frenzy has seen a rising demand to test novel methods of epidemic/pandemic surveillance, prediction, and containment in some of the most vulnerable communities. These communities lack the regulatory and infrastructural capacity to mitigate harmful ramifications. With this emergence is a pivot towards 'humanitarian innovation,' where technological advancements and corporate industry collaboration are foregrounded as means to enhance aid delivery. In many ways, these narratives of innovation and scale replicate the language of Silicon Valley’s start-up culture. Surveillance of the poor and disempowered is carried out under the guise and rhetoric of care. In this scenario, market ideals and data technologies (re)construe social good as dependent on the “imposition of certain unfreedoms” as the cost of protection (Magalhaes and Couldry 2021). As big data technologies, they foreground a convergence of market logistics and global networks with existing and already problematic international humanitarian infrastructures (Madianou 2019). These convergences create new power arrangements that further perpetuate an unequal and complex dependency of developing countries on foreign organizations and corporations. Pushback against these data demands showcases competing notions of where risk truly lies. While resistance to data demands was at the state level, community responses to imposed epidemic regulations ranged from non-compliance to riots. These resistances demonstrated how the questions of ‘who and what is a threat?’ or ‘who and what is risky?’ and ‘to whom?’ experience shifting definitions in relation to these technologies as global, national, and community imaginaries are reinforced and reproduced as cultural, political, as well as biological units. 

Source

Akinwumi, Adjua. 2023. "Technological care vs Fugitive care: Exploring Power, Risk, and Resistance in AI and Big Data During the Ebola Epidemic." In 4S Paraconference X EiJ: Building a Global Record, curated by Misria Shaik Ali, Kim Fortun, Phillip Baum and Prerna Srigyan. Annual Meeting of the Society of Social Studies of Science.

(MNOs) were barraged with requests from international humanitarian and Western data analytics agencies to provide Call Detail Record data. This data could furnish the large-scale ambitions of data modelling to track and predict contagion. Despite its utility in tracking mobility and, as such, disease, CDR’s use raises many privacy concerns. In addition, embedded within a turn towards datafication, CDR technologies for surveillance embed specific ontologies of the data-focused society they emerge from. There is a false equivalence embedded in the relationship between humans and technology. The predominantly Western idea that one phone equals one person underlines the claim that CDR data accurately tracks distinct user movements, encoding a Western “phone self-subjectivity” (Erikson 2018). However, the refusal by some African actors to hand over sensitive mobile data to international agencies was met with forceful rhetoric of Africa’s moral obligation to comply—to forgo privacy rights in the name of ‘safety.’ The Ebola context reflects an emergent digitization of emergencies in the Global South, which is reshaping the way societies understand and manage emergencies, risk, data, and technology. The big data frenzy has seen a rising demand to test novel methods of epidemic/pandemic surveillance, prediction, and containment in some of the most vulnerable communities. These communities lack the regulatory and infrastructural capacity to mitigate harmful ramifications. With this emergence is a pivot towards 'humanitarian innovation,' where technological advancements and corporate industry collaboration are foregrounded as means to enhance aid delivery. In many ways, these narratives of innovation and scale replicate the language of Silicon Valley’s start-up culture. Surveillance of the poor and disempowered is carried out under the guise and rhetoric of care. In this scenario, market ideals and data technologies (re)construe social good as dependent on the “imposition of certain unfreedoms” as the cost of protection (Magalhaes and Couldry 2021). As big data technologies, they foreground a convergence of market logistics and global networks with existing and already problematic international humanitarian infrastructures (Madianou 2019). These convergences create new power arrangements that further perpetuate an unequal and complex dependency of developing countries on foreign organizations and corporations. Pushback against these data demands showcases competing notions of where risk truly lies. While resistance to data demands was at the state level, community responses to imposed epidemic regulations ranged from non-compliance to riots. These resistances demonstrated how the questions of ‘who and what is a threat?’ or ‘who and what is risky?’ and ‘to whom?’ experience shifting definitions in relation to these technologies as global, national, and community imaginaries are reinforced and reproduced as cultural, political, as well as biological units. 

Akinwumi, Adjua. 2023. "Technological care vs Fugitive care: Exploring Power, Risk, and Resistance in AI and Big Data During the Ebola Epidemic." In 4S Paraconference X EiJ: Building a Global Record, curated by Misria Shaik Ali, Kim Fortun, Phillip Baum and Prerna Srigyan. Annual Meeting of the Society of Social Studies of Science. Honolulu, Hawai'i, Nov 8-11.

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Byron Good, Ph.D., is a professor of Medical Anthropology at Harvard Medical School. His primary area of research is mental illness and how social perceptions evolves around these issues, in terms of both treatment and social acceptance. Dr. Good has several works on these issues, including several that explore the perspective of bio-medicine in non-western medical knowledge, the cultural meaning of mental illness, and patient narrative during illness. His publications including several papers, books, and edited volumes; he is regarded as a major contributor to the field of psychological anthropology. 

The article primarily asserts that how a patient narrates or describes their medical history is deeply rooted in their native culture. As such, physicians must be aware of how an individual's medical experiences can be altered based on this. In turn, physicians must recognize the importance of story-telling and anecdotes when receiving information directly from patients. Narratives project the patient's experience and events through their perspective, granting professionals a glimpse into their thought processes and action patterns.

The author, Byron J. Good, is a Harvard professor in the department of global health and social medicine. He is the director of the International Mental Health Training Program, and has significant experience with field research that has led to many publications.

The article’s main argument is that the narration of an illness is founded in the emotional connection it has to the sufferers life, the place from which they view the illness which includes individual and cultural aspects. Furthermore any lack of factual accuracy is an indicator of the social and cultural environment in which the illness presents itself and is revealing as to how it will be perceived and treated.

The main argument is supported primarily through interviews with many individuals living in Ankara, through which they describe the first presentation of their seizures and in many cases the steps they tool to attempt a cure. Along with the interviews, statistics of the individuals interviewed and their diagnoses is used to provide a reference point to better understand their stories. Finally the article includes an analysis of narratives in a more general sense that can be applied to the narrative of an illness.

• “… illness narratives - both the corpus of story episodes and the larger life "story" or illness narrative to which they contribute - have elements in common with fiction. They have a plot; succession is ordered as history or event, given configuration.” (164)
• “The diverse accounts of the illness in these narratives represent alternative plots, a telling of the story in different ways, each implying a different source of efficacy and the possibility of an alternative ending to the story. My point is not that persons having access to a plural medical system do not simply choose among alternative forms of healing but instead draw on all of them” (155)
• “Predicament, human striving, and an unfolding in time toward a conclusion are thus central to the syntax of human stories, and all of these, as we will see, are important to stories about illness experience.” (145)