Fatores associados ao aumento da vulnerabilidade de participantes de pesquisa

Lima, Sandro Gonçalves de; Maia, Luna Gama; Dourado, Aline Tenório; Silva, Lívia Cristina Gomes; Lima, Tatiana Albuquerque Gonçalves de; Medeiros, Zulma; Feitosa, Saulo Ferreira; Oliveira, Daniel Alexandre de; Welkovic, Stefan

doi:10.1590/1983-80422017252196

Cited by 1 publication

(1 citation statement)

References 19 publications

Supporting

Mentioning

Contrasting

Order By: Relevance

“…For that reason, the methods developed for community-based participatory research (CBPR) and “community-engaged research” (CEnR) strive to engage a broad constituency of stakeholders in the decision-making processes as equal partners [ 10 , 11 ]. Decisions are not made for but with the researched community despite the contextual or structural vulnerabilities of the research environment [ 12 , 13 ]. This includes making decisions about sharing potential research benefits with participants and communities.…”

Section: Introductionmentioning

confidence: 99%

Who to engage in HIV vaccine trial benefit-sharing negotiations? An empirical proposition of a framework

Pancras,

Ezekiel,

Mbugi

et al. 2024

BMC Med Ethics

View full text Add to dashboard Cite

Background A morally sound framework for benefit-sharing is crucial to minimize research exploitation for research conducted in developing countries. However, in practice, it remains uncertain which stakeholders should be involved in the decision-making process regarding benefit-sharing and what the implications might be. Therefore the study aimed to empirically propose a framework for benefit-sharing negotiations in research by taking HIV vaccine trials as a case. Methods The study was conducted in Tanzania using a case study design and qualitative approaches. Data were collected using in-depth interviews (IDI) and focus group discussions (FGD). A total of 37 study participants were selected purposively comprising institutional review board (IRB) members, researchers, community advisory board (CAB) members, a policymaker, and HIV/AIDS advocates. Deductive and inductive thematic analysis approaches were deployed to analyze collected data with the aid of MAXQDA version 20.4.0 software. Results The findings indicate a triangular relationship between the research community, researched community and intermediaries. However, the relationship ought to take into consideration the timing of negotiations, the level of understanding between parties and the phase of the clinical trial. The proposed framework operationalize partnership interactions in community-based participatory research. Conclusion In the context of this study, the suggested framework incorporates the research community, the community being researched, and intermediary parties. The framework would guarantee well-informed and inclusive decision-making regarding benefit-sharing in HIV vaccine trials and other health-related research conducted in resource-limited settings.

show abstract