Other than the solicitation of "local input" at the introduction of a study, and/or the presence of a "community member" who may sit on a local IRB, there is no formal mechanism by which the actual study participants in developing country research can make their views known. The enormous differences in power, wealth, and education that frequently exist between the researcher and the research subject may create a communication chasm that often gets summed up as "cultural barriers". Despite good intentions, translators, posters, verbal messages, and 'education sessions', many in the research community are aware that participants in their studies may not really thoroughly understand what they have signed up for or why. As a step towards moving beyond an awareness of these issues and looking for ways to address them, investigators from Johns Hopkins are conducting a study of research participants' experiences and perceptions of the research study in which they are enrolled. Over the next 6 months, participants from up to 25 studies on 3 different continents will be interviewed regarding their enrollment in a study. In private, semi-structured interviews, participants will be asked a series a series of open ended questions such as: do you understand the purpose of this project? Do you know what research is? Studies will be selected to represent the enormous variety of research done in the developing world. Qualitative data analysis will be performed following data collection, and a final report on study findings will be issued.
Learning Objectives: At the conclusion of the session, the participant will be able to: 1. List some of the ethical considerations that arise in relationship to study subjects in developing country research. 2. Discuss the perceptions of developing country research participants regarding research and describe their experience from their point of view. 3. Identify areas that are particularly problematic or of ethical concern regarding research subjects' perceptions and experiences as enrollees in a study
Keywords: Bioethics, Developing Countries
Presenting author's disclosure statement:
Organization/institution whose products or services will be discussed: None
I do not have any significant financial interest/arrangement or affiliation with any organization/institution whose products or services are being discussed in this session.