ArticleBMJ open2021
Sickle Cell Disease Genomics of Africa (SickleGenAfrica) Network: ethical framework and initial qualitative findings from community engagement in Ghana, Nigeria and Tanzania.
Article in BMJ open, 2021. The graph could read no effect estimate from its abstract, so it casts no vote on the map. Cited by 13 papers, 1 of them a synthesis that pooled it.
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The trial behind it
Trials whose registry record cites this paper, or whose number appears in the abstract. A trial that started after this paper was published is citing it as background, not reporting it.
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Who cites it
13 citing papers in PubMed, 1 synthesis or guideline pooled it.
- Context of data sharing practices in collaborative human genomic research in low and middle income countries: A systematic review.PloS one · 2026Pooled it
- Decolonizing genomic data ownership: a qualitative study of legal practices and access in Uganda.BMC medical ethics · 2026Article
- Unleashing potential: assessing Africa's readiness for the data science revolution to impact health.Nature communications · 2026Review
- The West African Genetic Medicine Center as a model to address the challenge of genetic disorders in Africa.Nature genetics · 2026Article
- From policy to practice: World Health Organization's contribution to safer blood transfusions in Africa for sickle cell management - a review.Annals of medicine and surgery (2012) · 2026Review
- Patient, parent and provider perspectives on sickle cell disease genetics research in Jamaica.PLOS global public health · 2026Article
- Elevated serum heme oxygenase-1 in pediatric sickle cell disease: Insights from the SickleGenAfrica Network.HemaSphere · 2025Article
- The dawn of a cure for sickle cell disease through CRISPR-based treatment: A critical test of equity in public health genomics.Annals of human genetics · 2025Review
- The intersection of sickle cell disease, stigma, and pain in Africa.Hematology. American Society of Hematology. Education Program · 2024Review
- Financial strain and resilience: a qualitative exploration of parental perspectives on caring for children with sickle cell disease in Ghana.BMC health services research · 2024Article
- The ethical challenges of diversifying genomic data: A qualitative evidence synthesis.Cambridge prisms. Precision medicine · 2024Review
- Views of adults living with sickle cell disease on the theoretical return of secondary genomic findings.Genetics in medicine : official journal of the American College of Medical Genetics · 2024Article
- Polygenic risk scores for disease risk prediction in Africa: current challenges and future directions.Genome medicine · 2023Review
Corrections and comments
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Authors and funding
19 authors.
Funding
Abstract
objectivesTo provide lay information about genetics and sickle cell disease (SCD) and to identify and address ethical issues concerning the Sickle Cell Disease Genomics of Africa Network covering autonomy and research decision-making, risk of SCD complications and organ damage, returning of genomic findings, biorepository, data sharing, and healthcare provision for patients with SCD.
designFocus groups using qualitative methods.
settingSix cities in Ghana, Nigeria and Tanzania within communities and secondary care.
participantsPatients, parents/caregivers, healthcare professionals, community leaders and government healthcare representatives.
resultsResults from 112 participants revealed similar sensitivities and aspirations around genomic research, an inclination towards autonomous decision-making for research, concerns about biobanking, anonymity in data sharing, and a preference for receiving individual genomic results. Furthermore, inadequate healthcare for patients with SCD was emphasised.
conclusionsOur 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.
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What OpenQuestion holds
Registered trials
Read under generation 80e0d062 · epoch 390. Bibliography from PubMed, PubMed Central and OpenAlex; grants from NIH RePORTER; trial links from ClinicalTrials.gov; estimates, votes and beliefs from the OpenQuestion graph.