What constitutes good ethical practice in genomic research in Africa? Perspectives of participants in a genomic research study in Uganda
Previous research has consistently highlighted the importance of stakeholder engagement in identifying and developing solutions to ethical challenges in genomic research, especially in Africa where such research is relatively new. In this paper, we examine what constitutes good ethical practice in r...
| Үндсэн зохиолчид: | , , , , , |
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| Формат: | Journal article |
| Хэл сонгох: | English |
| Хэвлэсэн: |
Taylor and Francis
2019
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| _version_ | 1826294850733998080 |
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| author | Rutakumwa, R De Vries, J Parker, M Tindana, P Mweemba, O Seeley, J |
| author_facet | Rutakumwa, R De Vries, J Parker, M Tindana, P Mweemba, O Seeley, J |
| author_sort | Rutakumwa, R |
| collection | OXFORD |
| description | Previous research has consistently highlighted the importance of stakeholder engagement in identifying and developing solutions to ethical challenges in genomic research, especially in Africa where such research is relatively new. In this paper, we examine what constitutes good ethical practice in research, from the perspectives of genomic research participants in Uganda. Our study was part of a multi-site qualitative study exploring these issues in Uganda, Ghana and Zambia. We purposively sampled various stakeholders including genomic research participants, researchers, research ethics committee members, policy makers and community members. This paper presents the findings from in-depth interviews with 27 people with diabetes who had participated in a diabetes genomic study. Data were collected using semi-structured interviews. Manual thematic content analysis was conducted using a framework approach. Findings indicate three key requirements that research participants see as vital for genomic research to be more responsive to research participants’ needs and contextual realities: (1) de-emphasising the role of experts and institutions in the consenting process, (2) clarity about the timing and nature of feedback both of findings relevant to the health of individuals and about the broad progress of the study, and (3) more effective support for research participants during and after the study. |
| first_indexed | 2024-03-07T03:52:03Z |
| format | Journal article |
| id | oxford-uuid:c19ded1b-bf0d-4f15-bd42-a01f1db561d4 |
| institution | University of Oxford |
| language | English |
| last_indexed | 2024-03-07T03:52:03Z |
| publishDate | 2019 |
| publisher | Taylor and Francis |
| record_format | dspace |
| spelling | oxford-uuid:c19ded1b-bf0d-4f15-bd42-a01f1db561d42022-03-27T06:02:48ZWhat constitutes good ethical practice in genomic research in Africa? Perspectives of participants in a genomic research study in UgandaJournal articlehttp://purl.org/coar/resource_type/c_dcae04bcuuid:c19ded1b-bf0d-4f15-bd42-a01f1db561d4EnglishSymplectic Elements at OxfordTaylor and Francis2019Rutakumwa, RDe Vries, JParker, MTindana, PMweemba, OSeeley, JPrevious research has consistently highlighted the importance of stakeholder engagement in identifying and developing solutions to ethical challenges in genomic research, especially in Africa where such research is relatively new. In this paper, we examine what constitutes good ethical practice in research, from the perspectives of genomic research participants in Uganda. Our study was part of a multi-site qualitative study exploring these issues in Uganda, Ghana and Zambia. We purposively sampled various stakeholders including genomic research participants, researchers, research ethics committee members, policy makers and community members. This paper presents the findings from in-depth interviews with 27 people with diabetes who had participated in a diabetes genomic study. Data were collected using semi-structured interviews. Manual thematic content analysis was conducted using a framework approach. Findings indicate three key requirements that research participants see as vital for genomic research to be more responsive to research participants’ needs and contextual realities: (1) de-emphasising the role of experts and institutions in the consenting process, (2) clarity about the timing and nature of feedback both of findings relevant to the health of individuals and about the broad progress of the study, and (3) more effective support for research participants during and after the study. |
| spellingShingle | Rutakumwa, R De Vries, J Parker, M Tindana, P Mweemba, O Seeley, J What constitutes good ethical practice in genomic research in Africa? Perspectives of participants in a genomic research study in Uganda |
| title | What constitutes good ethical practice in genomic research in Africa? Perspectives of participants in a genomic research study in Uganda |
| title_full | What constitutes good ethical practice in genomic research in Africa? Perspectives of participants in a genomic research study in Uganda |
| title_fullStr | What constitutes good ethical practice in genomic research in Africa? Perspectives of participants in a genomic research study in Uganda |
| title_full_unstemmed | What constitutes good ethical practice in genomic research in Africa? Perspectives of participants in a genomic research study in Uganda |
| title_short | What constitutes good ethical practice in genomic research in Africa? Perspectives of participants in a genomic research study in Uganda |
| title_sort | what constitutes good ethical practice in genomic research in africa perspectives of participants in a genomic research study in uganda |
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