Imperial College London
Dr Kofi A Anie MBE

Dr Kofi A Anie MBE

Faculty of Medicine, Faculty of Medicine Centre

 
 
 
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Contact

 

+44 (0)20 8453 2060k.anie Website

 
 
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Location

 

Central Middlesex HospitalCentral Middlesex Hospital

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Summary

 

Publications

Citation

BibTex format

@article{Anie:2021:10.1136/bmjopen-2020-048208,
author = {Anie, KA and Olayemi, E and Paintsil, V and Owusu-Dabo, E and Adeyemo, TA and Sani, MU and Galadanci, NA and Nnodu, O and Tluway, F and Adjei, DN and Mensah, P and Sarfo-Antwi, J and Nwokobia, H and Gambo, A and Benjamin, A and Salim, A and Osae-Larbi, JA and Ofori-Acquah, SF and SickleGenAfrica, Network},
doi = {10.1136/bmjopen-2020-048208},
journal = {BMJ Open},
title = {Sickle cell disease genomics of Africa (SickleGenAfrica) network: ethical framework and initial qualitative findings from community engagement in Ghana, Nigeria, and Tanzania},
url = {http://dx.doi.org/10.1136/bmjopen-2020-048208},
volume = {11},
year = {2021}
}
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RIS format (EndNote, RefMan)

TY  - JOUR
AB  - ObjectivesTo provide lay information about genetics and sickle cell disease (SCD), and to identify and address ethical issues concerning SickleGenAfrica 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 utilising 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 bio-banking, 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.
AU  - Anie,KA
AU  - Olayemi,E
AU  - Paintsil,V
AU  - Owusu-Dabo,E
AU  - Adeyemo,TA
AU  - Sani,MU
AU  - Galadanci,NA
AU  - Nnodu,O
AU  - Tluway,F
AU  - Adjei,DN
AU  - Mensah,P
AU  - Sarfo-Antwi,J
AU  - Nwokobia,H
AU  - Gambo,A
AU  - Benjamin,A
AU  - Salim,A
AU  - Osae-Larbi,JA
AU  - Ofori-Acquah,SF
AU  - SickleGenAfrica,Network
DO  - 10.1136/bmjopen-2020-048208
PY  - 2021///
SN  - 2044-6055
TI  - Sickle cell disease genomics of Africa (SickleGenAfrica) network: ethical framework and initial qualitative findings from community engagement in Ghana, Nigeria, and Tanzania
T2  - BMJ Open
UR  - http://dx.doi.org/10.1136/bmjopen-2020-048208
UR  - http://hdl.handle.net/10044/1/90733
VL  - 11
ER  -
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