Personal and community benefits and harms of research: views from Rakai, Uganda
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Date
2007
Journal Title
Journal ISSN
Volume Title
Publisher
Aids
Abstract
To assess what individuals in low-income countries perceive as benefits
and harms of population-based HIV/STD research.
Design: 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.
Methods: 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.
Results: 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 RHSPsponsored
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.
Conclusions: 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.
Description
Keywords
Clinical trials, Ethics, Human experimentation, Research, Risks and benefits
Citation
Thiessen, C., Ssekubugu, R., Wagman, J., Kiddugavu, M., Wawer, M. J., Emanuel, E., ... & Grady, C. (2007). Personal and community benefits and harms of research: views from Rakai, Uganda. Aids, 21(18), 2493-2501.