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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
  • *Corresponding author for this work

Research output: Contribution to journalArticleAcademicpeer-review

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
Pages (from-to)349-356
Number of pages8
JournalDeveloping world bioethics
Volume18
Issue number4
Early online dateMay 2017
DOIs
Publication statusPublished - Dec 2018
Externally publishedYes

Keywords

  • Community network
  • Contraception
  • Informed consent
  • Qualitative research
  • Rwanda

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