Ethical, Legal, and Social Implications of Newborn Screening in Africa: A Scoping Review
Victory Oghenetega Samuel1, Abdullahi Adeyinka Adejare1,2, Ushotanefe Useh1
1Lifestyle Diseases Research Entity, Faculty of Health Sciences, North-West University, Mafikeng 2745, South Africa.
Insights
Newborn screening in Africa shows promise for child health but faces ethical, legal, and social challenges. Strengthening policy and community engagement is crucial for effective newborn screening programs.
Area of Science:
- Public Health
- Bioethics
- Health Systems Research
Background:
- Newborn screening (NBS) can reduce childhood morbidity in Africa.
- NBS initiatives present unique ethical, legal, and social implications (ELSI) due to health system constraints, cultural diversity, and resource limitations.
Purpose of the Study:
- To conduct a scoping review of ELSI in NBS across Africa.
- Identify key challenges, research gaps, and future needs for NBS programs in the African context.
Main Methods:
- Systematic search of 5 databases (AJOL, Scopus, PubMed, Web of Science, BMJ Journals) for peer-reviewed studies (2008-2025).
- Included 27 studies from 12 African countries, analyzing disease types and ELSI dimensions.
- Thematic analysis of recurring ethical, legal, and social concerns.
Main Results:
- Most studies focused on ethical (informed consent, privacy, justice) and social (stigma, awareness, cultural perceptions) dimensions.
- Legal frameworks and data protection were rarely addressed.
- Sickle cell disease and hearing screening were the primary focus; South Africa, Tanzania, and Ghana led publications.
Conclusions:
- Ethical and social issues dominate the discourse on NBS in Africa, with limited legal oversight.
- Strengthening national policy guidelines, community involvement, and context-specific ethical frameworks is essential.
- This is vital for establishing equitable, reliable, and sustainable NBS programs across Africa.
Abstract:
Newborn screening initiatives have the potential to mitigate childhood morbidity in Africa, but they also have special ethical, legal, and social implications (ELSI) that are influenced by issues with the health system, cultural diversity, and limited resources. This scoping review explores the ELSI of newborn screening across Africa to identify key challenges, gaps, and future research needs. A systematic search identified 27 peer-reviewed studies published between 2008 and 2025, covering 12 African countries. Data were extracted on study characteristics, disease types, and ELSI dimensions from African Journals Online (AJOL), Scopus, PubMed, Web of Science, and BMJ Journals. Thematic analysis mapped recurring ethical, legal, and social concerns. Most studies examined ethical and social dimensions, while legal frameworks were rarely addressed. South Africa, Tanzania, and Ghana contributed the largest number of publications. Sickle cell disease (52%) and hearing screening (30%) were the dominant foci. Common ethical issues included informed consent, privacy, and justice; legal gaps centered on the absence of data protection and frameworks; and social concerns involved stigma, awareness, and cultural perceptions of hereditary disease. Ethical and social issues dominate NBS discourse in Africa, whereas legal oversight remains limited. To guarantee fair, reliable, and long-lasting newborn screening programs, national policy guidelines, community involvement, and context-specific ethical frameworks must be strengthened.
