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  1. 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 - 2022 - Research Ethics 18 (3):193-209.
    Research Ethics, Volume 18, Issue 3, Page 193-209, July 2022. 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 (...)
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  • Improving understanding in the research informed consent process: a systematic review of 54 interventions tested in randomized control trials. [REVIEW]Adam Nishimura, Jantey Carey, Patricia J. Erwin, Jon C. Tilburt, M. Hassan Murad & Jennifer B. McCormick - 2013 - BMC Medical Ethics 14 (1):28.
    Obtaining informed consent is a cornerstone of biomedical research, yet participants comprehension of presented information is often low. The most effective interventions to improve understanding rates have not been identified.
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  • A qualitative study on aspects of consent for genomic research in communities with low literacy.Daima Bukini, Columba Mbekenga, Siana Nkya, Lisa Purvis, Sheryl McCurdy, Michael Parker & Julie Makani - 2020 - BMC Medical Ethics 21 (1):1-7.
    BackgroundLow literacy of study participants in Sub - Saharan Africa has been associated with poor comprehension during the consenting process in research participation. The concerns in comprehension are far greater when consenting to participate in genomic studies due to the complexity of the science involved. While efforts are made to explore possibilities of applying genomic technologies in diseases prevalent in Sub Saharan Africa, we ought to develop methods to improve participants’ comprehension for genomic studies. The purpose of this study was (...)
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  • Bioethical reflexivity and requirements of valid consent: conceptual tools.John Barugahare - 2019 - BMC Medical Ethics 20 (1):44.
    Despite existing international, regional and national guidance on how to obtain valid consent to health-related research, valid consent remains both a practical and normative challenge. This challenge persists despite additional evidence-based guidance obtained through conceptual and empirical research in specific localities on the same subject. The purpose of this paper is to provide an account for why, despite this guidance, this challenge still persist and suggest conceptual resources that can help make sense of this problem and eventually mitigate it’. This (...)
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