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African researchers' perceptions and expectations of the benefits of genomics research in Africa : a qualitative study
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 s...
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| Format: | Thesis |
| Language: | English |
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Department of Medicine
2016
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| _version_ | 1867614407125630976 |
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| access_status_str | Open Access |
| author | Munung, Nchangwi Syntia |
| author2 | de Vries, Jantina |
| author_browse | Munung, Nchangwi Syntia de Vries, Jantina |
| author_facet | de Vries, Jantina Munung, Nchangwi Syntia |
| author_sort | Munung, Nchangwi Syntia |
| collection | Thesis |
| description | 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. |
| format | Thesis |
| id | oai:open.uct.ac.za:11427/20960 |
| institution | University of Cape Town (South Africa) |
| language | eng |
| last_indexed | 2026-06-10T12:51:33.026Z |
| license_str | Not specified — see source repository |
| provenance_str_mv | Harvested via OAI-PMH from UCTD — University of Cape Town Open Access Repository |
| publishDate | 2016 |
| publishDateRange | 2016 |
| publishDateSort | 2016 |
| publisher | Department of Medicine |
| publisherStr | Department of Medicine |
| record_format | dspace |
| source_str | UCTD — University of Cape Town Open Access Repository |
| spelling | oai:open.uct.ac.za:11427/20960 African researchers' perceptions and expectations of the benefits of genomics research in Africa : a qualitative study Munung, Nchangwi Syntia de Vries, Jantina Mayosi, Bongani M Bioethics 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. 2016-07-28T12:20:41Z 2016-07-28T12:20:41Z 2016 Master Thesis Masters MSc (Med) http://hdl.handle.net/11427/20960 eng application/pdf Department of Medicine Faculty of Health Sciences University of Cape Town |
| spellingShingle | Bioethics Munung, Nchangwi Syntia African researchers' perceptions and expectations of the benefits of genomics research in Africa : a qualitative study |
| thesis_degree_str | Master's |
| title | African researchers' perceptions and expectations of the benefits of genomics research in Africa : a qualitative study |
| title_full | African researchers' perceptions and expectations of the benefits of genomics research in Africa : a qualitative study |
| title_fullStr | African researchers' perceptions and expectations of the benefits of genomics research in Africa : a qualitative study |
| title_full_unstemmed | African researchers' perceptions and expectations of the benefits of genomics research in Africa : a qualitative study |
| title_short | African researchers' perceptions and expectations of the benefits of genomics research in Africa : a qualitative study |
| title_sort | african researchers perceptions and expectations of the benefits of genomics research in africa a qualitative study |
| topic | Bioethics |
| url | http://hdl.handle.net/11427/20960 |
| work_keys_str_mv | AT munungnchangwisyntia africanresearchersperceptionsandexpectationsofthebenefitsofgenomicsresearchinafricaaqualitativestudy |