Personal and community benefits and harms of research: views from Rakai, Uganda

Abstract

To assess what individuals in low-income countries perceive as benefits and harms of population-based HIV/STD research. A total of 811 research participants, research decliners, and community opinion leaders in the Rakai District, Uganda were surveyed. Types of personal and community benefits and harms, as well as rates of reporting great personal and community benefit were assessed. Using logistic regression, demographic characteristics, participant and opinion leader status, use of Rakai Health Sciences Program (RHSP) services, and perceived research effects were entered as predictors of reported great personal and great community benefit. Most respondents thought that RHSP research was of great personal (85%) and community (88%) benefit. The perception that the RHSP was a great personal benefit was correlated with female sex, post-secondary education, frequent use of RHSP-sponsored medical services, health knowledge gains, and increased hope for future health improvements. Persons of non-Baganda ethnicity and 30-39 year-olds were less likely to believe research was personally beneficial. Regarding research as a great community benefit was associated with reported health knowledge gains, greater hope for Rakai residents' future health, and local economic benefit. Decliners were the most likely to report a personal harm, while community opinion leaders identified community harms at the highest rates. The majority of Rakai residents report that HIV/STD research has enhanced their own and their communities' welfare. Different factors were associated with the belief that research is a personal versus community benefit. Variations in participant, decliner, and community opinion leader perceptions highlight inadequacies of current community consultation mechanisms.