Trust Based on Ethics: The Foundation of the Participatory Research

The commonly held view on how society can ensure that research is ethical begins by assuming that the science is objective and the best avenue for arriving at valid knowledge. We question that assumption and in particular the manner in which western science practices have embodied this assumption. So to the minority groups who are tired of misrepresentation and downright abuse from the research establishment.

Recent studies, for example, Softcheck’s African Americans Continue To Avoid Clinical Trials (2001), warn that African-American and other minority communities’ participation in clinical trials is dropping to a level that endangers the necessary research to develop population-specific treatments and pharmaceuticals. Levels of trust are so low that even when a proposed study focuses on a community-identified problem, minority community members will not participate. Therefore, the research community finds itself compelled to explore community concerns about the conduct of science more aggressively.

From this more inclusive starting point, we explore mechanisms that permit so-called “study subjects” to participate more fully in the epistemological and ethical structuring of research projects. Community-based participatory research (CBPR), participatory action research (PAR), and action research (AR), hold an important key. We pay particular attention to research practices and perspectives that involve members of minority and other marginalized communities (starting with African Americans), and the role of institutions within these communities, e.g., Historically Black Colleges and Universities (HBCU), play in setting research agendas and practices we will examine topics and issues that relate specifically to minority community.