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
Makerere University College of Health Sciences, Uganda.
Makerere University College of Humanities and Social Sciences, Uganda.
Res Ethics. 2022 Jul;18(3):193-209. doi: 10.1177/17470161221076974. Epub 2022 Feb 7.
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.
本研究旨在探讨关键研究团队成员在获取药物遗传学研究知情同意方面的经验和做法,并确定在同意过程中用于增强理解的方法。数据收集包括对15名关键研究人员进行定性、深入访谈,这些研究人员参与了在乌干达为艾滋病毒感染者获取参与药物遗传学临床试验的知情同意。该研究探讨了两个突出主题:用于传达信息和增强研究参与者理解的方法,以及同意过程中面临的挑战。确定了获取同意的几个障碍和促进因素。本研究确定了创新且可能有效的同意策略,应予以研究和独立验证。