An Identity Crisis: The Politics of Race, Health, and Citizenship for Sickle Cell Disease in Brazil

• In Event: Genetic Inclusion: Science, Política, and Identities in Mexico and Brazil

Abstract

In 2006, a Brazilian Health Council consisting of researchers, health professionals, and non-governmental organizations, collaborated with the federal government to approve a National Health Policy for the Black Population. A political victory for the Movimento Negro, the policy sought to address health needs for a population that faces consistent discrimination and decreased access to resources. Activists and policy makers used the genetic condition of Sickle Cell Disease (SCD) as a key argument for the special biological needs of the Black population in the construction of this policy. In doing so they linked ideas about raça or cor to a genetic identity, as a strategy to remediate a long history of injustice. This paper examines the role of SCD in the construction of the Política de Saúde Integral da População Negra. This policy and subsequent initiatives have contributed to ongoing debates about ancestry, race, identity politics, difference, and biological determinism in Brazil. This paper describes how SCD has been framed and used by various actors to mobilize health care for underserved populations. It raises questions about the productive possibility and unintended consequences of the construction of SCD as a “Black” disease in Brazil. What has this construction meant for patients living with SCD, whether phenotypically branco or negro? What are the dangers of linking racial categories with biomedical conditions that in fact do not correlate to color or continental ancestry? And finally, how has illness become a path to claiming inclusion and citizenship in Brazil?

Author

• Melissa Creary, Emory University