Research Ethics Review (Jul 2022)

Experiences and practices of key research team members in obtaining informed consent for pharmacogenetic research among people living with HIV: a qualitative study

  • Nabukenya Sylvia,
  • Ochieng Joseph,
  • Kaawa-Mafigiri David,
  • Munabi Ian,
  • Nakigudde Janet,
  • Nakwagala Frederick Nelson,
  • Barugahare John,
  • Kwagala Betty,
  • Ibingira Charles,
  • Twimwijukye Adelline,
  • Sewankambo Nelson,
  • Mwaka Erisa Sabakaki

DOI
https://doi.org/10.1177/17470161221076974
Journal volume & issue
Vol. 18

Abstract

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This study aimed to explore experiences and practices of key research team members in obtaining informed consent for pharmacogenetics research and to identify the approaches used for enhancing understanding during the consenting process. Data collection involved 15 qualitative, in-depth interviews with key researchers who were involved in obtaining informed consent from HIV infected individuals in Uganda for participation in pharmacogenetic clinical trials. The study explored two prominent themes: approaches used to convey information and enhance research participants’ understanding and challenges faced during the consenting process. Several barriers and facilitators for obtaining consent were identified. Innovative and potentially effective consenting strategies were identified in this study that should be studied and independently verified.