Linking worlds: a theoretical reflection on some preconditions for ethnographic collaborations in personalized medicine

Abstract

Precision, or personalized, medicine (PM) is a ground-breaking approach to medical care which aims to predict, prevent and treat diseases by studying, on an individual scale, the pathogenic potential of the association between genetic and environmental factors. As one of the most important outcomes of biotechnological research, PM is generated in the lab. Nonetheless, the impacts of PM will be observed outside of the lab, namely, on the modification of population’s patterns of use and access to healthcare. Taking PM as object of study, anthropologists are challenged to make a double reflection. The first consists in understanding which peculiarities an ethnography should have to grasp engineers’ and other experts’ underlying modes of knowing and doing inside de lab. The second, more analytical, consists in identifying the indicators revealed by that ethnography which may promote an interpretation of how these modes simultaneously mirror and resonate a given cultural will located both upstream and downstream the lab — from and to outside of it. The purpose of this paper is to reflect on the hypothesis stressing that an ethnographic collaboration might configure an effective way of doing this.

A unidade da diversidade: Um olhar antropológico sobre os processos de implementação do modelo de cuidados de saúde baseados em valor

“…Simultaneously, as mentioned above, such ethnography must include the anthropologist's participation in the centres of debate and controversy where technoscientific discursivity is structured and particular policies are designed, that is, within the places where technological dramas occur. Linking these worlds is a presupposition for a real critical reading of the critical capacities of the actors involved in the political economy of promise, as I have already had the opportunity to defend elsewhere (Costa, 2019a -see also Sonnert & Holton, 2002, among others).…”

“…Thirdly, it must be a collaborative and experimental ethnography (cf. Fischer, 2007;Marcus, 2010), which provides data from circles of expertise and allows the emergence of third spaces between specific research projects and epistemological approaches (see Costa, 2018Costa, , 2019a.…”

“…This ambition, continues Marcus, "adds immense scope and complexity to traditional research processes" (Marcus, 1998:240). This implies the realization of a description both dense and simple, in which the anthropologist, assuming the preferential role of cultural intermediary (Van der Geest, 2010), cultivates a flexible participation, according to the interests of the field(s) and the levelling of the ethnographic relationship (Costa, 2018(Costa, , 2019a. Seventh, it must be an ethnography that demonstrates the researcher's political responsibility, that is, one that reflects the researcher's responsibility to promote sub-political ways (Hess, 2007) of how to bring scientific, technical, and patient communities to change their practices in order to achieve goals, such as adjusting the health care value measurement in a way that simultaneously promotes and criticizes the plans, tools and practices dedicated to anticipatorily govern the risk associated to the final impacts of the design that has been adopted.…”