Bioethics, Health Equity, Social Justice, Advocacy and Activism, Race and Ethnicity, Race and Racism, Identity Politics, Health Policy, Brazil, Health Disparities, Afro-Brazilian Culture, Sickle Cell Disease, Brazilian Health, Cultural Studies, Racial and Ethnic Politics, Social Movements (History), Health Policy (Social Policy), Social Power and Health Philanthropy, Ethnography, Epistemology.
- •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.
Bounded justice is an analytical frame and an evaluative tool. It is a biopolitical and bioethical concept that illuminates how science-based interventions aimed at racialized communities frequently fail to recognize embodied cumulative effects of marginalization. This oversight in turn undermines effectiveness. The bounded justice concept emerges out of my ethnographic study of race-based health policy in Brazil (Creary). Passed in 2009, the National (Brazilian) Policy for Black Population Health was a hard won victory for the Black Movement, which included mandatory participatory policy-making, changes to data collection and medical education, and increased access to health services. While the policy produced political optimism and excellent optics for the government, once implemented, it reified biological notions of race, was chronically underfunded, and failed to substantively engage with community stakeholders. The policy constitutes a form of bounded justice, a limited response sufficient to quiet critics but inadequate to reckon with historically entrenched realities.This framework highlights how it is impossible to attend to fairness, entitlement, and equality when the basic social and physical infrastructures underlying them have been eroded by racism. Bounded justice helps us understand up front that we must create and re-create systems, interventions, policies, and technologies that account for that erosion and offer high-grade reinforcements.
As academic institutions and the scientific community writ-large take on an urgent commitment to equity and inclusion and as hospital systems, scholars, and communities begin to undertake efforts to engage, understand and reconstruct how communities were and are disparately impacted by the pandemic, the bounded justice framework suggests that efforts to include marginalized communities in this post-hoc reckoning are susceptible to the same dynamics that exacerbated the pandemic’s impacts on these communities in the first place.
Bounded justice is an attempt to distribute health rights without disturbing the underlying mechanisms that generated initial inequalities. Its performance hinges on the historico-geographical context in which it is situated and can permeate any number of medical, social, and ethical realms. Bounded justice shows the limits that even a right to health would provide-in the Brazilian context. There are two sides working in conjunction to produce this notion of bounded justice. On one side is a marginalized population who draw upon both the sickle gene and African heritage to make competing claims upon the State and on the other is the State, which helps, distribute programs, education, and pharmaceuticals. This relationship is being facilitated by the political processes of a relatively new democracy determined to help give power to the historically powerless. In theory, these health reparations seek “to nurture the group’s self-empowerment, and thus aid in the nation’s social and cultural transformation” (269). In reality, the unequal and ineffective practices of the government in conjunction with the lack of experience and exposure that Afro-Brazilian citizens have in handling political power contributes to the bounded quality of the justice they are offered.
In the U.S. context we might apply bounded justice to the uptick in attention to precision medicine and the utility of genomics – without addressing with equal fervor, the ways in which systemic social and political factors contribute to disease. I’m thinking about here, a salient quote from Shim et. al. (2014) that states: “…the persistent and consistent use of SIRE (self-identified race and ethnicity) as only a proxy, and the simultaneous use of AIMs as a necessary technique that says something about the “American mix” but not about the American inequality, enable researchers to avoid the conceptually and methodologically more challenging task of measuring environmental, cultural, and social determinants in and of themselves.” YES. Scientific and public health policies are created, but are bounded in it’s embodiment. What does bounded justice add to our understanding about the distribution of goods, the production of knowledge, public engagement for research, or the unintended consequences of inclusion? I’m thinking about all these things.
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.
The Cultural Malleability of Biology: Sickle Cell Disease and the State. April 2014.
Invited Lecture to University of Brasilia, Department of Anthropology Seminar Series “Anthropology and Health Policies.” Brasilia, Federal District, Brazil.
Sickle Cell Disease Technology for Women by Women in Uganda
In Africa, sickle cell disease contributes substantially to mortality in children younger than 5 years and in Uganda alone the public health burden is great (Ndeezi 2016, Green 2015, Serjeant 2003). The W.H.O. strategy for sickle cell disease (SCD) in the African Region is comprehensive. The guiding principles include country ownership of the strategy, partnership and team building, evidence-based interventions, and cultural sensitivity.
My new funded project will center women at the development and implementation stage of mDex-a diagnostic tool for SCD. At one end is a Ugandan women-led team interfacing with Western forces and funders as they develop a patent for mDex. I plan to investigate how technology is gendered, how they (as African women) are considered as innovators, and how their performance through technology can be placed in broader configurations of simultaneous inclusion and exclusion.
At the other end, are the women who stand to benefit (at least in theory) from the diagnosis itself. How will they (through consent and assistance), in conjunction with medical personnel, contribute to knowledge production for SCD in Uganda? Longitudinally, I am interested in the ways that empowerment take shape and how this empowerment that turns citizens (primarily mothers) into laboratorians might impact community building and local policy making? Will mDex become a state project? Drawing from the theoretical fields of the anthropology of technoscience, feminist technoscience, and postcolonial technoscience, I aim to situate social, geographical, and political debates about neglect, innovation, and empowerment.