Toward an open access genomics database of South Africans: ethical considerations
Genomics research holds the potential to improve healthcare. Yet, a very low percentage of the genomic data used in genomics research internationally relates to persons of African origin. Establishing a large-scale, open access genomics database of South Africans may contribute to solving this probl...
| Main Authors: | , |
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| Format: | Article |
| Language: | English |
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Frontiers Media S.A.
2023-05-01
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| Series: | Frontiers in Genetics |
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| Online Access: | https://www.frontiersin.org/articles/10.3389/fgene.2023.1166029/full |
| _version_ | 1797826329445400576 |
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| author | Amy Gooden Donrich Thaldar Donrich Thaldar |
| author_facet | Amy Gooden Donrich Thaldar Donrich Thaldar |
| author_sort | Amy Gooden |
| collection | DOAJ |
| description | Genomics research holds the potential to improve healthcare. Yet, a very low percentage of the genomic data used in genomics research internationally relates to persons of African origin. Establishing a large-scale, open access genomics database of South Africans may contribute to solving this problem. However, this raises various ethics concerns, including privacy expectations and informed consent. The concept of open consent offers a potential solution to these concerns by (a) being explicit about the research participant’s data being in the public domain and the associated privacy risks, and (b) setting a higher-than-usual benchmark for informed consent by making use of the objective assessment of prospective research participants’ understanding. Furthermore, in the South African context—where local culture is infused with Ubuntu and its relational view of personhood—community engagement is vital for establishing and maintaining an open access genomics database of South Africans. The South African National Health Research Ethics Council is called upon to provide guidelines for genomics researchers—based on open consent and community engagement—on how to plan and implement open access genomics projects. |
| first_indexed | 2024-04-09T12:31:02Z |
| format | Article |
| id | doaj.art-23df5b2b0dcb4d7fba410fe5a2c5f202 |
| institution | Directory Open Access Journal |
| issn | 1664-8021 |
| language | English |
| last_indexed | 2024-04-09T12:31:02Z |
| publishDate | 2023-05-01 |
| publisher | Frontiers Media S.A. |
| record_format | Article |
| series | Frontiers in Genetics |
| spelling | doaj.art-23df5b2b0dcb4d7fba410fe5a2c5f2022023-05-16T05:00:39ZengFrontiers Media S.A.Frontiers in Genetics1664-80212023-05-011410.3389/fgene.2023.11660291166029Toward an open access genomics database of South Africans: ethical considerationsAmy Gooden0Donrich Thaldar1Donrich Thaldar2School of Law, University of KwaZulu-Natal, Durban, South AfricaSchool of Law, University of KwaZulu-Natal, Durban, South AfricaPetrie-Flom Center for Health Law Policy, Biotechnology and Bioethics, Harvard Law School, Cambridge, MA, United StatesGenomics research holds the potential to improve healthcare. Yet, a very low percentage of the genomic data used in genomics research internationally relates to persons of African origin. Establishing a large-scale, open access genomics database of South Africans may contribute to solving this problem. However, this raises various ethics concerns, including privacy expectations and informed consent. The concept of open consent offers a potential solution to these concerns by (a) being explicit about the research participant’s data being in the public domain and the associated privacy risks, and (b) setting a higher-than-usual benchmark for informed consent by making use of the objective assessment of prospective research participants’ understanding. Furthermore, in the South African context—where local culture is infused with Ubuntu and its relational view of personhood—community engagement is vital for establishing and maintaining an open access genomics database of South Africans. The South African National Health Research Ethics Council is called upon to provide guidelines for genomics researchers—based on open consent and community engagement—on how to plan and implement open access genomics projects.https://www.frontiersin.org/articles/10.3389/fgene.2023.1166029/fullautonomydatabasegenomics researchopen accessopen consentprivacy |
| spellingShingle | Amy Gooden Donrich Thaldar Donrich Thaldar Toward an open access genomics database of South Africans: ethical considerations Frontiers in Genetics autonomy database genomics research open access open consent privacy |
| title | Toward an open access genomics database of South Africans: ethical considerations |
| title_full | Toward an open access genomics database of South Africans: ethical considerations |
| title_fullStr | Toward an open access genomics database of South Africans: ethical considerations |
| title_full_unstemmed | Toward an open access genomics database of South Africans: ethical considerations |
| title_short | Toward an open access genomics database of South Africans: ethical considerations |
| title_sort | toward an open access genomics database of south africans ethical considerations |
| topic | autonomy database genomics research open access open consent privacy |
| url | https://www.frontiersin.org/articles/10.3389/fgene.2023.1166029/full |
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