“IT IS BAD BECAUSE IT LIMITS CAPACITY BUILDING HERE BACK AT HOME" GENETIC AND GENOMIC RESEARCHERS’ PERSPECTIVES ON BIOLOGICAL SAMPLE SHARING IN COLLABORATIVE RESEARCH

As part of a bigger on-going mixed methods study exploring the perceptions and experiences of various stakeholders on the informed consent process for genetic/genomic research in Uganda qualitative data was collected and analyzed to identify genetic/genomic researchers’ perspectives on biological sample data sharing in collaborative research. The study was conducted at Makerere University College of Health Sciences (MakCHS), one of the nine constituent colleges at Makerere University in Uganda. All participants were researchers actively involved in genetic/genomic research in Uganda and affiliated to Makerere University College of Health Sciences (MakCHS). Participants were principal investigators of protocols involving host genomics and genetics research that were approved by Uganda National Council for Science and Technology (UNCST) for the period 2012-2017. UNCST provides regulatory oversight of all research activities in the country; and per local regulations, all protocols approved by accredited research ethics committees 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 its affiliate research institutes were eligible. A list of 23 investigators was generated and all were invited to participate 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 (H3Africa). Fifteen qualitative in-depth interviews were conducted between February to June 2019 focusing on knowledge, perceptions and experiences of genetics and genomics researchers on the storage and future use of biological materials for research. Twelve of the researchers were male. All participants were purposively selected as they were conducting genetic/genomic research at MakCHS. The interviews focused on 4 main domains for analysis: 1) opinion on the collection of BM for reuse; 2) opinion on the BM export/transfer and regulation of biobanking research; 3) challenges faced by local researchers in collaborative biobanking research; and 4) possible solutions to improve/realize outcomes of biological sample and associated data sharing. Interviews, lasting between 45-60 minutes. All interviews were conducted in English. Verified transcripts were imported into NVivo 12 software (QSR International Pty Ltd, 2014) to manage and organize the data. Data analysis was conducted iteratively throughout the study using a thematic approach. A team based approach of thematic analysis was employed. Ethical approval was obtained from the Makerere University School of Biomedical Sciences Higher Degrees and Research Ethics Committee followed by clearance by Uganda National Council for Science and Technology. Written informed consent was obtained from all participants prior to interview. All recordings and transcripts were de-identified, assigned special codes and stored on a password-protected computer. No participant identifying information was published.