STS Speaker. Dissonant Infrastructures: Tensions between Science and Public Health Embedded in Sickle Cell Disease in Salvador, Bahia, Brazil

Epistemic authority for knowledge production about sickle cell disease (SCD) in Brazil lay mostly at the feet of elite scientists associated with established institutions. These gatekeepers often focus on the biological and medical processes that take place within the body. SCD activists embedded in the public health infrastructure in Salvador, discursively deem the interest from scientists to be based in a paradigm that treats the person living with SCD as a commodity to clinical science. What occurs when social infrastructures that “emphasize the durability and permanence of social systems within which biomedical knowledge production and labor occur,” (Dent, 2016) are at odds with each other? What takes place when the social milieu of place erodes these infrastructures? This presentation will explore the ways in which activists in the municipal public health department for Salvador circumvent modes of elite knowledge production and reconfigure how SCD is defined by situating the discourse from “inside the body” to “outside” and from biological to cultural.