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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...

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Principais autores: 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
Formato: Artigo
Idioma:Inglês
Publicado em: Frontiers Media S.A. 2019-10-01
coleção:Frontiers in Genetics
Assuntos:
sickle cell disease
registries
SickleInAfrica
ELSI (ethical
legal
and social issues)
Acesso em linha:https://www.frontiersin.org/article/10.3389/fgene.2019.00943/full
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