Browsing by Author "Grady, Christine"

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    Personal and community benefits and harms of research: views from Rakai, Uganda
    (Aids, 2007) Thiessena, Carrie; Ssekubugu, Robert; Wagman, Jennifer; Kiddugavu, Mohammed; Wawer, Maria J.; Emanuel, Ezekiel; Gray, Ronald; Serwadda, David; Grady, Christine
    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.
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    Research Benefits for Hypothetical HIV Vaccine Trials: The Views of Ugandans in the Rakai
    (Ethics & Human Research, 2008) Grady, Christine; Wagman, Jennifer; Ssekubugu, Robert; Wawer, Maria J.; Serwadda, David; Kiddugavu, Mohammed; Nalugoda, Fred; Gray, Ronald H.; Wendler, David; Dong, Qian; Dixon, Dennis O.; Townsend, Bryan; Wahl, Elizabeth; Emanuel, Ezekiel J.
    Collaborative, multinational clinical research is complicated by thorny ethical issues, especially when sponsored by developed world entities and conducted in the developing world. An overarching ethical concern in all research is the possible exploitation of vulnerable individuals or populations. Exploitation, often understood as an unfair distribution of benefits,' may be more of a challenge in international research because of background disparities in health, health resources, and power between developed and developing countries.- Codes and guidelines have recommended pro- vision of benefits to participants or the host community as one means of minimizing exploitation in inter- national research.3 Ensuing debates on the type and level of benefit that should be provided have focused on issues such as compensation to individual research participants and post trial access to products proven effective.4 Although research participants are often reimbursed or compensated with money or other goods, researchers and members of research ethics boards sometimes disagree about what kind of reimbursement or compensation-and how much-is appropriate. International guidelines note that participants may be reimbursed or compensated for time, travel, and inconvenience with money or free medical care in acceptable amounts approved by local research ethics boards, as long as amounts are "not so large or the medical services so extensive as to induce prospective subjects to consent to participate in the research against their better judgment."6 Previous studies have shown that financial incentives may impact individuals' willingness to participate in HIV vaccine trials, but few studies have directly assessed respondents' opinions about whether research participants should be financially compensated.