Sickle Cell Disease (SCD) has historically been a primary object of genetic research, therapeutic innovation, and bioethical concern. It is how the scientific world has come to understand modern human genetics, positioning it as a prime candidate for CRISPR’s gene editing (Pace, 2007). Despite its high price and complex treatment, recovery, and follow-up, scientists involved in the scientific endeavor of CRISPR have cited justice and inequity as organizing bioethical justifications for their work. These attempts at justice for the SCD population are bounded by larger systemic and structural factors that are not recognized as part of the scientific enterprise and are further contextualized by the geo-political histories according to which country this technology is being offered in. In previous research (Creary, 2018), I have demonstrated the complex ways that policy for SCD has been influenced by the politics and medicine of the United States. Historically, the majority of Brazilian studies on sickle cell anemia that sought to understand the course of the disease, its main features, means of diagnosis, and possible cures and forms of prevention were grounded in medical and scientific articles from the United States (Cavalcanti, 2011). Brazilian research, however, always highlighted the differences between the racial contexts in these two countries. For this new project, I am interested in the ways the novel biotechnological advancement of gene editing, recently approved as a therapeutic for SCD in the United States, has begun to be discussed and understood in the context of three Portuguese-speaking countries linked to each other by colonization (Brazil, Portugal, Angola). Through a qualitative methods research design I aim to collect data on how information about the technology is flowing between these countries, how place influences these conversations, and how the patient populations perceive the promise of the technology. The funding from this grant will allow me to begin preliminary research in Brazil and Portugal, where I have existing connections.

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.