Biocultural Citizenship Research Overview

  • Biocultural citizenship relates to belonging in terms of genotype and ancestry.
  • SCD activists in Brazil address inequalities and seek racial health reparations.
  • Biology has legitimated cultural claims, especially for Black diasporic communities.

In 2006, the committee that developed the National Health Policy for the Black Population (NHPBP) chose sickle cell disease as their “flag to demand health rights.” The drafting of this policy was official recognition from the Ministry of Health for racial differences of its citizens in order to address certain inequalities in the form of racial health reparations. Through an ethnographic study which consisted of participant observation, life-story and semi-structured interviews, and surveys in the urban centers of Rio de Janeiro, São Paulo, Salvador, Belo Horizonte, and Brasília between November 2013 and November 2014, I introduce a new conceptual approach called biocultural citizenship. It is a flexible mode of enacting belonging that varies depending on disease status, skin color, social class, recognition of African lineage, and other identifiers. Using empirical evidence, this article explores how people living with sickle cell disease (SCD), civil society, and the Brazilian government—at state and federal levels—have contributed to the discourse on SCD as a “black” disease, despite a prevailing cultural ideology of racial mixture. Specifically, I demonstrate that the SCD movement strategically uses Blackness to make claims for health rights. Biocultural citizenship is dependent on the idea of biological and cultural difference that is coproduced by the State and Afro-Brazilian citizens. The use of biology to help legitimate cultural claims, especially in the Black Atlantic, contributes a new and distinct way to think about how race and skin color are used as tools of agency for diasporic communities.

An Identity Crisis for Sickle Cell Disease in Brazil

My research explores how patients, non-governmental organizations, and the Brazilian government, at state and federal levels, have contributed to the discourse of sickle cell disease (SCD) as a “black” disease, despite a prevailing cultural ideology of racial mixture. The concepts of race and race-associated health disparities are firmly planted in medical, public health, and scientific discourse. The current debate over the epidemiology of health disparities has garnered global attention, and reflects long-standing disagreements around the meaning of race in science. SCD is often ascribed to African ancestry, but more accurately it is a marker for ancestry in a geographic location where malaria is or was prevalent. I explore how culture and biology are used in tandem to make claims to citizenship.

Conflicting racial frameworks found within this case result in a multi-level identity crisis at the micro, meso, and macro level in Brazil. At the state level, I describe the reigning racial ideology and how the development of racialized health policy contests their own viewpoint. At the organizational level, I investigate the alignment of the SCD movement with the movimento negro and the decisions made by some civil societies to influence health policy using anti-racist motives. Lastly, I explore the actual embodiment of SCD in the patient population and the “identity crisis” many may experience upon being diagnosed with a “black” disease.  I aim to answer the question: How are different actors (re)defining race and health through culture, biology, policy and politics in contemporary Brazil? I analyze how frameworks of biology, social determinants, and policy respond to Brazilian cultural and historical ideas about race, health, identity, and legitimacy. Working with the theoretical tools of biological citizenship and biosociality, my work emphasizes the intimate relationships between the medical and the social. Drawing on ethnographic work and oral history in Brasília, Rio, and Salvador, my research aims to situate social, geographical, and political debates about race and SCD in their historical context.