Ethox/WEH Seminar - Newborn Screening for Sickle Cell Disease in Tanzania: Understanding ethical, social and resource based implications

Abstract

Introducing newborn screening services for Sickle Cell Disease in Sub-Saharan Africa (SSA) is proved to be the most cost effective approach to reducing morbidity and mortality associated with the disease. In view of that some countries in SSA are embarking on establishing and piloting newborn screening programs for Sickle Cell Disease complemented with comprehensive care services. While these initiatives are commendable, it is imperative to address context-relevant factors that could limit realization of optimal benefits of establishing the screening programs. In this study we used the pilot newborn screening program for Sickle Cell Disease in Tanzania as a platform to understand ethical, socio-cultural and resource based implication of implementing the program in Sub-Saharan Africa. In the first paper, we analyzed the effects of gender norms in the settings before and after newborn screening for Sickle Cell Disease and its influence on the quality of care of the child. In the second paper we highlighted sustainability approaches adapted by the implementers to sustain implementation of the program activities in resource constrained environment.