社区守门员对非洲裂研究中的基因组风险信息的看法和信念
Abimbola M Oladayo1,2, Oluwakemi Odukoya3, Veronica Sule4
1Department of Oral Pathology, Radiology and Medicine, College of Dentistry, University of Iowa, Iowa City, IA, USA. Abimbola-oladayo@uiowa.edu.
BMC public health
|February 16, 2024
概括
尼日利亚的社区守门员对基因组风险信息的看法不同. 培训和文化敏感性是将基因组研究纳入非洲社区的关键.
科学领域:
- 基因组学就是基因组学.
- 生物伦理学生物伦理学
- 公共卫生 公共卫生
背景情况:
- 社会文化因素对基因组信息在非洲研究中的接受性和实用性产生重大影响,特别是对于像 orofacial clefts (OFCs) 这样的污名化疾病.
- 社区守门员对社区成员的健康决策有很大的影响,他们的观点对于设计有效的参与基因组学研究策略至关重要.
- 解决非洲人在基因组研究中的代表性不足需要了解门卫对基因组风险信息 (GRI) 的看法.
研究的目的:
- 在撒哈拉以南非洲人口中调查社区守门人的观点,以基因组风险信息 (GRI) 为背景,在Orofcial裂 (OFCs) 的背景下.
- 探索社会文化因素和信仰如何影响影响力社区成员对GRI的理解和接受.
- 确定有效参与和协作在涉及非洲社区的基因组学研究的战略.
主要方法:
- 在尼日利亚拉各斯与214名守门员 (宗教,社区,民族领袖,传统分娩助理) 进行了25次重点小组讨论.
- 探讨了门对基因组风险信息 (GRI) 的意见,与OFC的经验,以及对合作决策的意愿.
- 在NVivo中使用主题分析分析了编码的转录.
主要成果:
- 出现了三个关键主题:关于GRI的知识,信念和愿意采取行动.
- 守门员对接受GRI表达了不同的看法,强调他们在基于信任的支持成员方面发挥的作用.
- 参与者表示需要医疗专家进行培训,并强调宗教和文化信仰对理解OFC和接受GRI的影响.
结论:
- 对文化敏感的公众参与对于开发有效的策略来管理非洲社区围绕基因组信息的不同意识形态至关重要.
- 通过卫生专家,科学家和社区/精神领袖之间的协同关系,可以实现GRI的更好理解和利用.
- 这些方法可以为非洲代表性不足的人口提供更广泛的获取基因组学研究进展.
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