Sickle Cell Disease Genomics of Africa (SickleGenAfrica) Network: ethical framework and initial qualitative findings from community engagement in Ghana, Nigeria and Tanzania.
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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DOI：
10.1136/bmjopen-2020-048208
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发表时间：
2021-07-23
期刊：
影响因子：
2.9
通讯作者：
SickleGenAfrica Network
中科院分区：
文献类型：
--
作者：
Anie KA;Olayemi E;Paintsil V;Owusu-Dabo E;Adeyemo TA;Sani MU;Galadanci NA;Nnodu O;Tluway F;Adjei DN;Mensah P;Sarfo-Antwi J;Nwokobia H;Gambo A;Benjamin A;Salim A;Osae-Larbi JA;Ofori-Acquah SF;SickleGenAfrica Network
提供有关遗传学和镰状细胞病（SCD）的非专业信息，并确定和解决有关非洲镰状细胞病基因组学网络的伦理问题，包括自主权和研究决策，SCD并发症和器官损伤的风险，基因组研究结果的返回，生物储存库，数据共享和SCD患者的医疗保健提供。使用定性方法的焦点小组。加纳、尼日利亚和坦桑尼亚的六个城市的社区和二级保健。患者、父母/护理人员、医疗保健专业人员、社区领袖和政府医疗保健代表。来自112名参与者的结果显示，围绕基因组研究的敏感性和愿望相似，倾向于自主决策研究，对生物库的担忧，数据共享的匿名性，以及对接收个人基因组结果的偏好。此外，还强调了SCD患者的医疗保健不足。我们的研究结果揭示了患者和父母/护理人员参与非洲基因组学研究的渴望，社区领导人的建议以及卫生专业人员和政策制定者的保证，尽管他们对医疗保健系统感到担忧。
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. Focus groups using qualitative methods. Six cities in Ghana, Nigeria and Tanzania within communities and secondary care. Patients, parents/caregivers, healthcare professionals, community leaders and government healthcare representatives. 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. 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.
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