Inclusive voices in international clinical trials: Co-constructing a RRI framework
Paper short abstract:
Paper long abstract:
Sub-Saharan Africa (SSA) remains the most disease endemic region worldwide. The great need for, and insufficient access to healthcare services and medical innovations is often the difference between life and death in this region. The increasing shift of clinical research activities from Europe and North America to lower-resourced countries found within the SSA region provides hope for addressing many neglected tropical diseases - through access to medical innovations, resources and increased research capacity - for populations with limited healthcare options. However, it is often the case that the local populations hosting research activities have little input in the types and design of research international organizations are interested in supporting. Research participants in particular are not afforded a voice in the governance of research, how products of research are distributed, how research objectives are developed and the processes used to achieve these goals. The lack of attention paid to these concerns exposes a gap in our ability to understand what a responsible research and innovation (RRI) framework may look like in the context of international clinical research. This paper attempts to contribute to closing this gap by exploring these concerns through ethnography and in-depth interviews. It elicits multi-stakeholder perspectives and expectations on what they consider to be RRI and what is required for the co-construction of a RRI framework, fruitful for both science and society. This works draws on the empirical data I have collected from clinical trial stakeholders in the course of two years of fieldwork in Ghana and Tanzania.