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

peter.suber's bookmarks 2023-06-04

Summary:

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.  

Link:

https://www.frontiersin.org/articles/10.3389/fgene.2023.1166029/full

From feeds:

[IOI] Open Infrastructure Tracking Project » Items tagged with oa.south in Open Access Tracking Project (OATP)
[IOI] Open Infrastructure Tracking Project » Items tagged with oa.africa in Open Access Tracking Project (OATP)
Open Access Tracking Project (OATP) » peter.suber's bookmarks

Tags:

oa.south_africa oa.south oa.privacy oa.new oa.medicine oa.ethics oa.data oa.consent oa.africa

Date tagged:

06/04/2023, 09:05

Date published:

06/04/2023, 05:05