Essay by stefania milan and Emiliano Treré at Data & Policy: “If numbers are the conditions of existence of the COVID-19 problem, we ought to pay attention to the actual (in)ability of many countries in the South to test their population for the virus, and to produce reliable population statistics more in general — let alone to adequately care for them. It is a matter of a “data gap” as well as of data quality, which even in “normal” times hinders the need for “evidence-based policy making, tracking progress and development, and increasing government accountability” (Chen et al., 2013). And while the World Health Organization issues warning about the “dramatic situation” concerning the spread of COVID-19 in the African continent, to name just one of the blind spots of our datasets of the global pandemic, the World Economic Forum calls for “flattening the curve” in developing countries. Progress has been made following the revision of the United Nations’ Millennium Development Goals in 2005, with countries in the Global South have been invited (and supported) to devise National Strategies for the Development of Statistics. Yet, a cursory look at the NYU GovLab’s valuable repository of data collaboratives” addressing the COVID-19 pandemic reveals the virtual absence of data collection and monitoring projects in the South of the hemisphere. The next obvious step is the dangerous equation “no data=no problem”.
Disease and “whiteness”
Epidemiology and pharmacogenetics (i.e. the study of the genetic basis of how people respond to pharmaceuticals), to name but a few amongst the number of concerned life sciences, are largely based on the “inclusion of white/Caucasians in studies and the exclusion of other ethnic groups” (Tutton, 2007). In other words, modeling of disease evolution and the related solutions are based on datasets that take into account primarily — and in fact almost exclusively — the caucasian population. This is a known problem in the field, which derives from the “assumption that a Black person could be thought of as being White”, dismissing specificities and differences. This problem has been linked to the “lack of social theory development, due mainly to the reluctance of epidemiologists to think about social mechanisms (e.g., racial exploitation)” (Muntaner, 1999, p. 121). While COVID-19 represents a slight variation on this trend, having been first identified in China, the problem on the large scale remains. And in times of a health emergency as global as this one, risks to be reinforced and perpetuated.
A succulent market for the industry
In the lack of national testing capacity, the developing world might fall prey to the blooming industry of genetic and disease testing, on the one hand, and of telecom-enabled population monitoring on the other. Private companies might be able to fill the gap left by the state, mapping populations at risk — while however monetizing their data. The case of 23andme is symptomatic of this rise of industry-led testing, which constitutes a double-edge sword. On the one hand, private actors might supply key services that resource-poor or failing states are unable to provide. On the other hand, however, the distorted and often hidden agendas of profit-led players reveals its shortcomings and dangers. If we look at the telecom industry, we note how it has contributed to track disease propagation in a number of health emergencies such as Ebola. And if the global open data community has called for smoother data exchange between the private and the public sector to collectively address the spread of the virus,in the absence of adequate regulatory frameworks in the Global South, for example in the field of privacy and data retention, local authorities might fall prey to outside interventions of dubious nature….(More)”.