African researchers' perceptions and expectations of the benefits of genomics research in Africa : a qualitative study

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dc.contributor.advisorde Vries, Jantinaen_ZA
dc.contributor.advisorMayosi, Bongani Men_ZA
dc.contributor.authorMunung, Nchangwi Syntiaen_ZA
dc.date.accessioned2016-07-28T12:20:41Z
dc.date.available2016-07-28T12:20:41Z
dc.date.issued2016en_ZA
dc.description.abstractIntroduction: Genomics research raises a number of ethical, legal and social issues (ELSI), one of which is the concept of benefit sharing. While benefits and benefit sharing are difficult to discuss because of questions on what needs to be shared, with whom and by whom, it cannot be pushed to the side-lines especially as it is a way of promoting justice in health research and of ensuring that research is of social value to study communities. In this study, we explored the perceptions and expectations of African genomics scientists on the benefits of genomics research to Africa. Method: This was a qualitative study and we adopted a grounded theory approach. I conducted 17 in-depth interviews with genomics researchers in Africa to explore their perceptions of benefits and benefit sharing in genomics research in Africa. Transcripts of interviews were imported into QSR-NVivo 10 for thematic analysis. A thematic analysis of informed consent documents used in 13 genomics studies in Africa was also done to explore how research benefits are documented. Results: Research collaboration, research capacity building and access to genomics medicine were perceived to be the main benefits of African genomics science (AGS). In terms of research collaboration, there were perceived fears of exploitation of African researchers and research participants, and the non-sustainability of AGS. To address the problem of exploitation, African researchers expressed the need for fairness in AGS through transparency and equity in research collaborations, enhancing research oversight, African ownership and leadership of AGS, community engagement and research capacity building. In terms of genomics medicine, African genomics researchers perceived that AGS would have an impact on healthcare in Africa in the area of diagnosis, pharmacogenomics and public health. However, there were concerns around access to genomics medicine by African populations, lack of capacity for genomics medicine in Africa and the need for AGS to focus on Africa's healthcare priorities. There was however limited awareness of the concept of benefit sharing among African genomics researchers though they perceived it is as an important concept for AGS. Interviewees suggested that benefit sharing could be in the form of research capacity building, feedback of study findings, science education, community projects and the sharing of profits.en_ZA
dc.identifier.apacitationMunung, N. S. (2016). <i>African researchers' perceptions and expectations of the benefits of genomics research in Africa : a qualitative study</i>. (Thesis). University of Cape Town ,Faculty of Health Sciences ,Department of Medicine. Retrieved from http://hdl.handle.net/11427/20960en_ZA
dc.identifier.chicagocitationMunung, Nchangwi Syntia. <i>"African researchers' perceptions and expectations of the benefits of genomics research in Africa : a qualitative study."</i> Thesis., University of Cape Town ,Faculty of Health Sciences ,Department of Medicine, 2016. http://hdl.handle.net/11427/20960en_ZA
dc.identifier.citationMunung, N. 2016. African researchers' perceptions and expectations of the benefits of genomics research in Africa : a qualitative study. University of Cape Town.en_ZA
dc.identifier.ris TY - Thesis / Dissertation AU - Munung, Nchangwi Syntia AB - Introduction: Genomics research raises a number of ethical, legal and social issues (ELSI), one of which is the concept of benefit sharing. While benefits and benefit sharing are difficult to discuss because of questions on what needs to be shared, with whom and by whom, it cannot be pushed to the side-lines especially as it is a way of promoting justice in health research and of ensuring that research is of social value to study communities. In this study, we explored the perceptions and expectations of African genomics scientists on the benefits of genomics research to Africa. Method: This was a qualitative study and we adopted a grounded theory approach. I conducted 17 in-depth interviews with genomics researchers in Africa to explore their perceptions of benefits and benefit sharing in genomics research in Africa. Transcripts of interviews were imported into QSR-NVivo 10 for thematic analysis. A thematic analysis of informed consent documents used in 13 genomics studies in Africa was also done to explore how research benefits are documented. Results: Research collaboration, research capacity building and access to genomics medicine were perceived to be the main benefits of African genomics science (AGS). In terms of research collaboration, there were perceived fears of exploitation of African researchers and research participants, and the non-sustainability of AGS. To address the problem of exploitation, African researchers expressed the need for fairness in AGS through transparency and equity in research collaborations, enhancing research oversight, African ownership and leadership of AGS, community engagement and research capacity building. In terms of genomics medicine, African genomics researchers perceived that AGS would have an impact on healthcare in Africa in the area of diagnosis, pharmacogenomics and public health. However, there were concerns around access to genomics medicine by African populations, lack of capacity for genomics medicine in Africa and the need for AGS to focus on Africa's healthcare priorities. There was however limited awareness of the concept of benefit sharing among African genomics researchers though they perceived it is as an important concept for AGS. Interviewees suggested that benefit sharing could be in the form of research capacity building, feedback of study findings, science education, community projects and the sharing of profits. DA - 2016 DB - OpenUCT DP - University of Cape Town LK - https://open.uct.ac.za PB - University of Cape Town PY - 2016 T1 - African researchers' perceptions and expectations of the benefits of genomics research in Africa : a qualitative study TI - African researchers' perceptions and expectations of the benefits of genomics research in Africa : a qualitative study UR - http://hdl.handle.net/11427/20960 ER - en_ZA
dc.identifier.urihttp://hdl.handle.net/11427/20960
dc.identifier.vancouvercitationMunung NS. African researchers' perceptions and expectations of the benefits of genomics research in Africa : a qualitative study. [Thesis]. University of Cape Town ,Faculty of Health Sciences ,Department of Medicine, 2016 [cited yyyy month dd]. Available from: http://hdl.handle.net/11427/20960en_ZA
dc.language.isoengen_ZA
dc.publisher.departmentDepartment of Medicineen_ZA
dc.publisher.facultyFaculty of Health Sciencesen_ZA
dc.publisher.institutionUniversity of Cape Town
dc.subject.otherBioethicsen_ZA
dc.titleAfrican researchers' perceptions and expectations of the benefits of genomics research in Africa : a qualitative studyen_ZA
dc.typeMaster Thesis
dc.type.qualificationlevelMasters
dc.type.qualificationnameMSc (Med)en_ZA
uct.type.filetypeText
uct.type.filetypeImage
uct.type.publicationResearchen_ZA
uct.type.resourceThesisen_ZA
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