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. 2023 May 16:14:1166029.
doi: 10.3389/fgene.2023.1166029. eCollection 2023.

Toward an open access genomics database of South Africans: ethical considerations

Amy Gooden  1 , Donrich Thaldar  1   2
Affiliations

Toward an open access genomics database of South Africans: ethical considerations

Amy Gooden et al. Front Genet. .

Abstract

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.

Keywords: South Africa; Ubuntu; autonomy; database; genomics research; open access; open consent; privacy.

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Conflict of interest statement

The authors declare that the research was conducted in the absence of any commercial or financial relationships that could be construed as a potential conflict of interest.

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