‘It is an entrustment’: Broad consent for genomic research and biobanks in sub-Saharan Africa
In recent years, there has been an increase in the establishment of biobanks for genetic and genomic studies around the globe. One example of this is the Human Heredity and Health in Africa Initiative (H3Africa), which has established biobanks in the sub-region to facilitate future indigenous genomi...
| Huvudupphovsmän: | , , , |
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| Materialtyp: | Journal article |
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Wiley
2017
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| _version_ | 1826293310766972928 |
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| author | Tindana, P Molyneux, S Bull, S Parker, M |
| author_facet | Tindana, P Molyneux, S Bull, S Parker, M |
| author_sort | Tindana, P |
| collection | OXFORD |
| description | In recent years, there has been an increase in the establishment of biobanks for genetic and genomic studies around the globe. One example of this is the Human Heredity and Health in Africa Initiative (H3Africa), which has established biobanks in the sub-region to facilitate future indigenous genomic studies. The concept of ‘broad consent’ has been proposed as a mechanism to enable potential research participants in biobanks to give permission for their samples to be used in future research studies. However, questions remain about the acceptability of this model of consent. Drawing on findings from empirical research about the role of trust in decision-making, we argue that an account of entrustment may be an appropriate way of addressing current challenges of seeking consent for biobank research in Africa. We propose a set of key points to consider that can support the proposed entrustment framework. |
| first_indexed | 2024-03-07T03:28:09Z |
| format | Journal article |
| id | oxford-uuid:b9c38956-57c2-4ec7-9f26-79b3258eee0c |
| institution | University of Oxford |
| last_indexed | 2024-03-07T03:28:09Z |
| publishDate | 2017 |
| publisher | Wiley |
| record_format | dspace |
| spelling | oxford-uuid:b9c38956-57c2-4ec7-9f26-79b3258eee0c2022-03-27T05:05:15Z‘It is an entrustment’: Broad consent for genomic research and biobanks in sub-Saharan AfricaJournal articlehttp://purl.org/coar/resource_type/c_dcae04bcuuid:b9c38956-57c2-4ec7-9f26-79b3258eee0cSymplectic Elements at OxfordWiley2017Tindana, PMolyneux, SBull, SParker, MIn recent years, there has been an increase in the establishment of biobanks for genetic and genomic studies around the globe. One example of this is the Human Heredity and Health in Africa Initiative (H3Africa), which has established biobanks in the sub-region to facilitate future indigenous genomic studies. The concept of ‘broad consent’ has been proposed as a mechanism to enable potential research participants in biobanks to give permission for their samples to be used in future research studies. However, questions remain about the acceptability of this model of consent. Drawing on findings from empirical research about the role of trust in decision-making, we argue that an account of entrustment may be an appropriate way of addressing current challenges of seeking consent for biobank research in Africa. We propose a set of key points to consider that can support the proposed entrustment framework. |
| spellingShingle | Tindana, P Molyneux, S Bull, S Parker, M ‘It is an entrustment’: Broad consent for genomic research and biobanks in sub-Saharan Africa |
| title | ‘It is an entrustment’: Broad consent for genomic research and biobanks in sub-Saharan Africa |
| title_full | ‘It is an entrustment’: Broad consent for genomic research and biobanks in sub-Saharan Africa |
| title_fullStr | ‘It is an entrustment’: Broad consent for genomic research and biobanks in sub-Saharan Africa |
| title_full_unstemmed | ‘It is an entrustment’: Broad consent for genomic research and biobanks in sub-Saharan Africa |
| title_short | ‘It is an entrustment’: Broad consent for genomic research and biobanks in sub-Saharan Africa |
| title_sort | it is an entrustment broad consent for genomic research and biobanks in sub saharan africa |
| work_keys_str_mv | AT tindanap itisanentrustmentbroadconsentforgenomicresearchandbiobanksinsubsaharanafrica AT molyneuxs itisanentrustmentbroadconsentforgenomicresearchandbiobanksinsubsaharanafrica AT bulls itisanentrustmentbroadconsentforgenomicresearchandbiobanksinsubsaharanafrica AT parkerm itisanentrustmentbroadconsentforgenomicresearchandbiobanksinsubsaharanafrica |