Strengthening ethical practice in population-based genetics and genomics research: participant views arising from Sickle-Cell Disease screening activities in East Africa
Vicki Marsh
This is a qualitative study of the social and ethical implications of research-based and diagnostic SCD screening in Kenya, aiming to provide evidence to support the development of recommendations for SCD and other genetic screening programmes in this and other developing countries. Sickle cell disease (SCD) is an inherited disorder with a high burden of morbidity and mortality in Africa for which diagnostic screening is practised and predictive screening has been recommended. Associated ethical, legal and social implications (ELSI) of genetic screening, including SCD, are well described globally. However, there is relatively little empirical data from Africa on the social and ethical implications of genetic screening to support planning of service provision.