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

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dc.contributor.authorAnie A Kofi
dc.contributor.authorOlayemi Edeghonghon
dc.contributor.authorPaintsil Vivian
dc.contributor.authorOwusu-Dabo Ellis
dc.contributor.authorAdeyemo Adenike Titilope
dc.contributor.authorSarfo-Antwi Joseph....et al
dc.date.accessioned2023-12-06T09:21:03Z
dc.date.available2023-12-06T09:21:03Z
dc.date.issued2021
dc.descriptionThis article is published by BMJ Open and is also available at http://bmjopen.bmj.com/
dc.description.abstractObjectives To 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. Design Focus groups using qualitative methods. Setting Six cities in Ghana, Nigeria and Tanzania within communities and secondary care. Participants Patients, parents/caregivers, healthcare professionals, community leaders and government healthcare representatives. Results Results 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. Conclusions 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.
dc.description.sponsorshipKNUST
dc.identifier.citationAnie KA, Olayemi E, Paintsil V, et al. Sickle Cell Disease Genomics of Africa (SickleGenAfrica) Network: ethical framework and initial qualitative findings from community engagement in Ghana, Nigeria and Tanzania
dc.identifier.uri10.1136/ bmjopen-2020-048208
dc.identifier.urihttps://ir.knust.edu.gh/handle/123456789/14632
dc.language.isoen
dc.publisherBMJ Open
dc.titleSickle Cell Disease Genomics of Africa (SickleGenAfrica) Network: ethical framework and initial qualitative findings from community engagement in Ghana, Nigeria and Tanzania
dc.typeArticle
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