Sickle Cell Disease Genomics of Africa (SickleGenAfrica) Network: ethical framework and initial qualitative findings from community engagement in Ghana, Nigeria and Tanzania.

Kofi A AnieEdeghonghon OlayemiVivian PaintsilEllis Owusu-DaboTitilope Adenike AdeyemoMahmoud U SaniNajibah Aliyu GaladanciObiageli NnoduFurahini TluwayDavid Nana AdjeiPeter MensahJoseph Sarfo-AntwiHenry NwokobiaAwwal GamboAdebola BenjaminArafa SalimJudith A Osae-LarbiSolomon Fiifi Ofori-Acquahnull null

Published in: BMJ open (2021)

Our findings revealed the eagerness of patients and parents/caregivers to participate in genomics research in Africa, with advice from community leaders and reassurance from health professionals and policy-makers, despite their apprehensions regarding healthcare systems.

Keyphrases

healthcare
sickle cell disease
mental health
single cell
end stage renal disease
newly diagnosed
ejection fraction
chronic kidney disease
public health
palliative care
peritoneal dialysis
prognostic factors
social media
decision making
patient reported outcomes