TY - JOUR
T1 - Sickle Cell Disease Genomics of Africa (SickleGenAfrica) Network
T2 - Ethical framework and initial qualitative findings from community engagement in Ghana, Nigeria and Tanzania
AU - Anie, Kofi A.
AU - Olayemi, Edeghonghon
AU - Paintsil, Vivian
AU - Owusu-Dabo, Ellis
AU - Adeyemo, Titilope Adenike
AU - Sani, Mahmoud U.
AU - Galadanci, Najibah Aliyu
AU - Nnodu, Obiageli
AU - Tluway, Furahini
AU - Adjei, David Nana
AU - Mensah, Peter
AU - Sarfo-Antwi, Joseph
AU - Nwokobia, Henry
AU - Gambo, Awwal
AU - Benjamin, Adebola
AU - Salim, Arafa
AU - Osae-Larbi, Judith A.
AU - Ofori-Acquah, Solomon Fiifi
N1 - Publisher Copyright:
©
PY - 2021/7/23
Y1 - 2021/7/23
N2 - 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.
AB - 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.
KW - haematology
KW - medical ethics
KW - public health
KW - qualitative research
UR - http://www.scopus.com/inward/record.url?scp=85111371073&partnerID=8YFLogxK
U2 - 10.1136/bmjopen-2020-048208
DO - 10.1136/bmjopen-2020-048208
M3 - Article
C2 - 34301659
AN - SCOPUS:85111371073
SN - 2044-6055
VL - 11
JO - BMJ Open
JF - BMJ Open
IS - 7
M1 - e048208
ER -
