Establishing a Multi-Country Sickle Cell Disease Registry in Africa: Ethical Considerations

Establishing a Multi-Country Sickle Cell Disease Registry in Africa: Ethical Considerations

Sickle cell disease (SCD) is one of the most prevalent genetic conditions in sub-Saharan Africa. It is a chronic, lifelong disease often characterized by severe pain. However, SCD has received little investment terms of health research, though there is currently a growing pool of SCD data from healt...

Full description

Bibliographic Details
Main Authors: Nchangwi Syntia Munung, Victoria Nembaware, Jantina de Vries, Daima Bukini, Furahini Tluway, Marsha Treadwell, Raphael Zozimus Sangeda, Gaston Mazandu, Mario Jonas, Vivian Paintsil, Obiageli E. Nnodu, Emmanuel Balandya, Julie Makani, Ambroise Wonkam
Format: Article
Language:English
Published: Frontiers Media S.A. 2019-10-01
Series:Frontiers in Genetics
Subjects:
sickle cell disease
registries
SickleInAfrica
ELSI (ethical
legal
and social issues)
Online Access:https://www.frontiersin.org/article/10.3389/fgene.2019.00943/full

Internet

https://www.frontiersin.org/article/10.3389/fgene.2019.00943/full

Similar Items