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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Date
2021
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Publisher
BMJ Open
Abstract
Objectives 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.
Description
This article is published by BMJ Open and is also available at http://bmjopen.bmj.com/
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Citation
Anie 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