Biopolitics of a Hereditary "Syphilis" in the Northeastern Sertão: Resistances to Modernity?

Abstract

This article analyzes the social construction of a genetic disease in Brazil's northeastern sertão from the theoretical perspective of Science and Technology Studies, focusing on processes of biomedicalization, biopolitics, and necropolitics. A disease traditionally known as syphilis was rediagnosed as Spoan Syndrome 200 by a group of researchers who played a crucial role in introducing scientific knowledge to this community. However, resistance emerged from both patients and their families, as well as from the local public authorities, for different reasons.

To understand these resistances, the methodology involved a literature review on transformations in the health field; a laboratory ethnography conducted at the Human Genome Study Center (CEGH-USP) laboratories at the University of São Paulo; interviews with researchers; and the collection of secondary data on rare genetic diseases that occur with higher frequency. The research conclusions indicate that to understand a disease with two names, it's first necessary to grasp its cultural context, the applied biopolitics, and the sociability relationships created by the disease. Secondly, it suggests that replacing traditional narratives with scientific discourse in a place that resists science itself might be a warning that we are imposing a worldview that may not be beneficial for Serrinha dos Pintos.