Informed consent, community engagement, and study participation at a research site in Kigali, Rwanda

Jennifer Ilo van Nuil, Evelyne Kestelyn, Grace Umutoni, Lambert Mwambarangwe, Marie M Umulisa, Janneke van de Wijgert, Raffaella Ravinetto

    Research output: Contribution to journalA1: Web of Science-article

    Abstract

    People enroll in medical research for many reasons ranging from decisions regarding their own or family members' health situation to broader considerations including access to health and financial resources. In socially vulnerable communities the choice to participate is often based on a risk-benefit assessment that goes beyond the medical aspects of the research, and considers the benefits received. In this qualitative study, we examined the motivations of Rwandan women to participate in a non-commercial collaborative research study examining the safety, acceptability, and adherence of a contraceptive vaginal ring in Rwanda juxtaposed with the perceptions of the research within the community. 351 women attended the screening visit, four were excluded because they were not able to complete the assessment of understanding. The remaining participants' ages ranged from 17 to 38 and 80% had primary level of education or below. 120 were enrolled. Findings highlighted motivations for joining the study that were relayed both formally by the clinic (e.g. testing and treatment) and informally by the community including the positive aspects of the ring. There were also some negative rumors circulating regarding the research site, likely from excluded participants who faced potential stigma based on that exclusion. It was understood by most participants that they were enrolled in a research study and participants actively sought out enrollment in the research for a variety of reasons. The experiences demonstrate that although inequalities in access to health care may create conflicting situations around the study, it is possible to form partnerships between a research center and participants/their partners, for research about reproductive health.

    Original languageEnglish
    JournalDeveloping World Bioethics
    Volume18
    Issue number4
    Pages (from-to)349-356
    Number of pages8
    ISSN1471-8731
    DOIs
    Publication statusPublished - 2018

    Keywords

    • Journal Article
    • Informed coonsent
    • research ethics
    • Developing countries
    • Community participation

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