Sickle cell disease genomics of Africa (SickleGenAfrica) network: ethical framework and initial qualitative findings from community engagement in Ghana, Nigeria, and Tanzania
File(s)
Published version
Author(s)
Type
Journal Article
Abstract
Objectives
To 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.
Design
Focus groups utilising 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 bio-banking, 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.
To 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.
Design
Focus groups utilising 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 bio-banking, 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.
Date Issued
2021-07-23
Date Acceptance
2021-06-29
Citation
BMJ Open, 2021, 11 (7)
ISSN
2044-6055
Publisher
BMJ Journals
Journal / Book Title
BMJ Open
Volume
11
Issue
7
Copyright Statement
© Author(s) (or their employer(s)) 2021. Re-use permitted under CC BY. Published by BMJ. https://creativecommons.org/licenses/by/4.0/This is an open access article distributed in accordance with the Creative Commons Attribution 4.0 Unported (CC BY 4.0) license, which permits others to copy, redistribute, remix, transform and build upon this work for any purpose, provided the original work is properly cited, a link to the licence is given, and indication of whether changes were made. See: https://creativecommons.org/licenses/by/4.0/.
License URL
Subjects
haematology
medical ethics
public health
qualitative research
Anemia, Sickle Cell
Biological Specimen Banks
Genomics
Ghana
Humans
Nigeria
Qualitative Research
Tanzania
SickleGenAfrica Network
1103 Clinical Sciences
1117 Public Health and Health Services
1199 Other Medical and Health Sciences
Publication Status
Published
Article Number
ARTN e048208
Date Publish Online
2021-07-23