DOI: 10.6084/m9.figshare.20937571
title: Benefit sharing in genomic and biobanking research in Uganda: perceptions of researchers and research ethics committee members

description: This qualitative exploratory study where data was collected using in-depth. This study is part of a bigger on-going study that is exploring the perceptions and experiences of various stakeholders on informed consent processes for genetic/ genomic research in Uganda. For this paper, we present findings on researchers and research ethics committee (REC) members’ perceptions on benefit sharing in international collaborative genomic and biobanking research (GBR). <em><strong>Study setting</strong></em> The study was conducted at Makerere University College of Health Sciences (MakCHS) and 10 RECs that had experience in conducting ethical review of genetic/ genomic research. Makerere College of Health Sciences is one of the nine constituent colleges at Makerere University in Uganda. As the largest and most research-intensive university in Uganda, Makerere University has tremendously impacted medical education and research capacity development in Uganda and the rest of Africa. There are 29 RECs in Uganda accredited by Uganda National Council for Science and Technology (UNCST). Of these, only 10 had experience with reviewing genetic/genomic research and were selected for inclusion in this study. At least one member was purposively selected from each REC, including three community representatives. <em><strong>Participants</strong></em> Participants were either researchers or REC members actively involved in the conduct and ethical review of genetic/genomic research respectively. The researchers were principal investigators of protocols involving host genetics/genomics that were approved by UNCST for the period 2012-2017. Only one researcher was a member of a REC. Uganda National Council for Science for Science and Technology provides regulatory oversight of all research activities in the country; and per local regulations, all protocols approved by accredited RECs are submitted to UNCST for approval and registration. We searched archived research protocols approved by UNCST for the period 2012-2017. Only investigators based at MakCHS and affiliate research institutes were eligible. A list of 23 investigators was generated and all were invited to participate in the study but only 15 consented and participated in the study, of which three were H3Africa principal investigators. The number of researchers conducting genetics and genomic research at MakCHS is not known however, it is important to note that there are several masters and PhD level scientists that are in training in genetic science and bioinformatics, mainly sponsored by the H3Africa initiative. There is only one clinical geneticist at MakCHS. The REC members were purposely selected based on their expertise in reviewing genetic/genomic research protocols. <em><strong>Data collection</strong></em> Thirty-four in-depth interviews were conducted between February to June 2019 by a team of five researchers that included the one bioethicist with training in medicine , a social scientist with experience in qualitative research methods, a medical educator with experience in qualitative data analysis and two research assistant who were also graduate students of bioethics . A team of four researchers, conducted all interviews to ensure consistency . Prior to the start of the study, the research team was trained on the protocol to ensure that they internalized and understood the study well. Data were collected using an in-depth interview guide that was developed by two of the authors and consisted of open-ended questions that explored researchers’ perceptions on benefit sharing in GBR. The interview guides were piloted and revised prior to the full data collection process. All interviews were conducted in English, audio recorded alongside detailed note taking, and later transcribed verbatim. On average, interviews lasted between 45 -60 minutes. Debriefing meetings were held by the research team at the end of each interview to check on completeness and review preliminary perspectives that had arisen.