From: Ethical considerations for biobanking and use of genomics data in Africa: a narrative review
Authors (Year) | Study design | Country (ies) | Population | Sample Size | Objective(s) |
---|---|---|---|---|---|
Akinyemi (2016) [8] | Case Control study | Ghana & Nigeria | Transnational, multicenter, hospital and community-based study recruited from sixteen (16) sites | 6,000 (3,000 cases and 3,000 controls) | To describe our experience with the development of efficient and reliable procedures for collection, processing, storage, and shipment of biological samples across coordinating sites |
Abdelhafiz (2019) [9] | Survey (Cross sectional) | Egypt | 3 University hospitals from 3 geographic regions of Egypt | 210 (259 recruited) | To assess the knowledge, attitude, willingness of Egyptian patients to contribute samples towards biobanks; to assess relationship between knowledge and attitude; to assess the factors and fears that might discourage participation |
O’Neill et al. (2016) [10] | Case Study Ethnographic research In-depth interviews, participant observation, informal conversations, and group discussions | Gambia | Village inhabitants in one village out of twelve in rural Gambia | 30 (15 men and 15 women) | To explore anxieties around blood-taking during screening for a malaria treatment trial in the Gambia |
Schalkwyk et al. (2012) [11] | Qualitative study Semi-structured interviews | South Africa | TB Research participants | 20 (16 female, 4 male) | To provide a preliminary exploration into the views of research participants on sample storage and re-use |
Tindana et al. (2012) [12] | Rapid assessment using Qualitative methods (in- depth interviews, focus group discussions and observations) | Ghana (Kassena-Nankana District in northern Ghana | Participants in the MalariaGEN project | 84 (research scientists and assistants, mothers) | To identify issues arising in practice during the enrolment of paediatric cases with severe malaria and matched healthy controls into the MalariaGEN study |
Moodley and Singh (2016) [13] | Qualitative study In-depth qualitative interviews | South Africa Western Cape, Gauteng and Kwa-Zulu Natal (South Africa) | Researchers (medical and scientific researchers, biobank and governance experts) | 21 | To explore perspectives of researchers working with bio specimens and/or biobanks in South Africa |
Tindana et al. (2014) [14] | Qualitative study In-depth interviews and focus group discussions | Kenya Ghana | Researchers; fieldworkers; research assistants; laboratory staff; RECs members; directors of research institutions; community representatives | 19 individuals (15 men, 4 women) 3 groups (averagely 6 individuals each) | To identify practical ethical issues arising in the collection, export, storage, and reuse of human biological samples in the context of international collaborative biomedical research |
Igbe and Adebamowo (2012) [15] | Focus Group Discussions (FGD) | Nigeria | Adults from different ethnic, age and socio-economic groups | 123 | To explore the perspectives of Nigerians on donation of specimen for the biobanking research |
Mwaka & Horn (2019) [16] | Cross-sectional Study | South Africa (3 universities and 2 research institutions) | Researchers (investigators, scientists, clinicians, pathologists, laboratory or repository personnel and managers who design and implement biomedical research) | 400 (62 respondents) | To explore researchers’ perspectives on ethical issues of biobanking, particularly informed consent and ethics review of research involving human resource repositories |
Wendler et al. (2005) [17] | Survey (Cross-sectional study) | Uganda | Adults who consented for their children up to 12 years to participate in an RCT | 347 | To explore views of Ugandans on stored biological samples |
Barchi et al. (2015) [18] | Qualitative study FGDs | Botswana | Members of Health research development board (HRDB) and institutional review board (IRB) | 41 | To explore the knowledge, concerns, and training needs of IRB members in Botswana with respect to the use of biospecimens in biomedical research |
Moodley et al. (2014) [19] | Mixed Methods Semi-structured questionnaire with both quantitative and qualitative questions | South Africa | Previous research participants | 200 | To explore the issues of sample collection, storage, export and future use of stored biological samples |