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

Abstract

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.

Genetic and Genomic Researchers’ Perspectives on Biological Sample Sharing in Collaborative Research in Uganda: A Qualitative Study

“…These approaches pose a challenge to informed consent for biobanking research in Africa because of the communitarian nature of society, customary beliefs, spirituality and relational autonomy (Akpa-Inyang & Chima, 2021). Recent studies from Uganda have reported inadequate understand of consent information in genetic and genomic research (Amayoa et al, 2022; Mwaka et al, 2021; Nabukenya et al, 2022; Rutakumwa et al, 2020); and this has been attributed to low genetic literacy, inaccuracy of translation of technical terminologies and concepts into local languages, reluctance of research participants to read informed consent documents in their entirety, key research team members not being well conversant with genetic/genomic concepts (Amayoa et al, 2022; Mwaka et al, 2021; Nabukenya et al, 2022), and ineffective community engagement approaches (Rutakumwa et al, 2020). Researchers therefore need to be flexible and reflexive enough in the way they think and approach the consenting process in genetic/genomic research (Barugahare, 2019).…”

“…Researchers therefore need to be flexible and reflexive enough in the way they think and approach the consenting process in genetic/genomic research (Barugahare, 2019). Flexible approaches and innovative methods for obtaining consent can lead to better understanding than more traditional literature-based methods (Nabukenya et al, 2022). That is why there is a need to contextualize the informed consent process to enhance comprehension during the informed consent process.…”

“…Flexible approaches and innovative methods for obtaining consent can lead to better understanding than more traditional literature-based methods (Nabukenya et al, 2022). That is why there is a need to contextualize the informed consent process to enhance comprehension during the informed consent process.…”

Awareness, experiences and perceptions regarding genetic testing and the return of genetic and genomics results in a hypothetical research context among patients in Uganda: a qualitative study

“…1 2 Additionally, literature on what constitutes appropriate practice in a particular context is limited. [5][6][7][8][9][10][11][12][13] Although existing international GGR-specific ethics guidelines can be used to inform policy development in research, adequate understanding of the local clinical context is essential. 1 14 In Uganda, some literature has been generated to guide the process.…”

“…[4][5][6] However, most studies are related to genetics or other research contexts, capturing views of research participants or researchers. [4][5][6][7] The clinical context and patient views have not been explored in the Ugandan setting neither are there any publications on patient views even though patients are the usual consumers of many diagnostic, therapeutic and public health interventions. Such patients tend to be more familiar with genetic testing, rather than genomics which is used mainly in research or for pathogen genomics testing.…”