More than sample providers: how genetic researchers in Pakistan mobilized a prenatal diagnostic service for thalassemia

Abstract

While unequally resourced partners from the so-called global South are often considered ‘mere sample providers’ in larger international genomics collaborations, in this paper, we show how they strategically work to mobilize their role in a global system of tissue exchange to deliver services for local communities. We unpack how a prenatal diagnostic service for thalassemia in Pakistan emerged out of the maneuvering efforts of internationally connected Pakistani researchers. By tracing the distributed capacities that emerged and circulated as they set about improving medical genetics in Pakistan, we outline some key conditions that led to the establishment of the service: first, the scale of unmet needs that geneticists faced when collecting data as part of their research that made medical genomics a relevant field; secondly, joint efforts between researchers and physicians that were engaged with the challenge of decreasing disease prevalence through diagnostics and abortion; and finally, the ways in which international research collaborations helped generate resources to improve medical genetics in Pakistan. To understand how genetic research and medicine is currently being developed in Pakistan, we need to ethnographically re-center our analyses in ways that allow us to identify the resourceful ways in which researchers maneuvre to secure locally relevant outcomes.

Dealing with complicity in fieldwork: Reflections on studying genetic research in Pakistan

“…It was a constructive engagement with the complicity of my inaction in the field that shifted my focus to the broader context of representation. Through my research I attempt to give voice to what my informants find to be relevant , to address what is most important in their lives (see Sheikh & Wahlberg, 2021 ). Thus, constructive complicity is not only limited to the fieldwork encounters, it can also mean the unsurfacing of inequalities that are otherwise elided, thus it extends to the politics of representation and has a temporal dimension.…”