2024
DOI: 10.1002/hast.4933
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Genomics and Health Data Governance in Africa: Democratize the Use of Big Data and Popularize Public Engagement

Nchangwi Syntia Munung,
Charmaine D. Royal,
Carmen de Kock
et al.

Abstract: Effectively addressing ethical issues in precision medicine research in Africa requires a holistic social contract that integrates biomedical knowledge with local cultural values and Indigenous knowledge systems. Drawing on African epistemologies such as ubuntu and ujamaa and on our collective experiences in genomics and big data research for sickle cell disease, hearing impairment, and fragile X syndrome and the project Public Understanding of Big Data in Genomics Medicine in Africa, we envision a transformat… Show more

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