Bounded Justice: Racism and the Ethics of Scientific Knowledge Production

• In Event: Racism and Health I

Abstract

Based on empirical data collected on the ways in which science is co-produced for sickle cell disease (SCD) in Brazil, this paper explores the ethical calculus of how scientific knowledge is legitimized. The static definition of SCD is reconfigured by the state and its Afro-Brazilian citizens in the co-production of health policy that is based on both biological and cultural distinction. These distinctions were attached to “blackness” despite a patient pool that spans the phenotypic spectrum. This reconfiguration occurred, in part, via the 1988 reformed federal constitution, which built in language that mandated that SCD communities had to be a part of the development, maintenance, and evaluation of health policy in conjunction with Ministry of Health officials. Despite this constitutional mandate for inclusion in policy, the societal and cultural influences to genomic discourse provided by SCD activists are discredited by scientists. There is a failure to recognize the impact of culture and history on science, in the same way that the State and others do so for policy. Bounded justice, as I define it, 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. This paper asks the question: how can we create a collaborative system of knowledge production that acknowledges both the societal barriers (racism and others) imprinted on marginal stakeholders as well as the marginality of the information itself?

Author

• Melissa Creary, University of Michigan, School of Public Health