A qualitative study on aspects of consent for genomic research in communities with low literacy
A qualitative study on aspects of consent for genomic research in communities with low literacy
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DOI：
10.1186/s12910-020-00488-0
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发表时间：
2020-06-12
影响因子：
2.7
通讯作者：
Makani, Julie
中科院分区：
文献类型：
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作者：
Bukini, Daima;Mbekenga, Columba;Makani, Julie
撒哈拉以南非洲地区研究参与者的低文化水平与参与研究的同意过程中的理解能力差有关。当同意参与基因组研究时，由于所涉及的科学的复杂性，理解方面的问题要大得多。在努力探索将基因组技术应用于撒哈拉以南非洲流行疾病的可能性的同时，我们应该开发方法来提高参与者对基因组研究的理解。本研究的目的是了解不同的方法，可以用来寻求在撒哈拉以南非洲国家的低识字率的个人在基因组研究，以提高理解的同意。方法采用质性研究设计，采用焦点小组讨论、深度访谈和参与观察等方法收集资料。这项研究是在坦桑尼亚Muhimbili国家医院进行的一项基于医院的镰状细胞病基因组研究中进行的。专题内容分析被用来分析记录本和实地记录。结果研究发现，文化水平对研究细节的理解影响不大。根据这项研究的参与者，提供信息的方法，语言和与研究参与者一起度过的时间是影响理解的关键因素。与会者一致认为，在个人同意之前举行小组会议，以提供详细的问答格式，是促进理解的最佳方法。结论参与者知情同意过程的质量受多种因素的影响。同意的研究类型，研究将在哪里实施以及谁是潜在的研究参与者是在同意过程中需要评估的因素之一。在基因组研究中，需要制定提高参与者理解能力的措施，以使识字水平低的参与者同意。
Background Low literacy of study participants in Sub - Saharan Africa has been associated with poor comprehension during the consenting process in research participation. The concerns in comprehension are far greater when consenting to participate in genomic studies due to the complexity of the science involved. While efforts are made to explore possibilities of applying genomic technologies in diseases prevalent in Sub Saharan Africa, we ought to develop methods to improve participants' comprehension for genomic studies. The purpose of this study was to understand different approaches that can be used to seek consent from individuals with low literacy in Sub-Saharan African countries in genomic research to improve comprehension. Methods Using qualitative study design, we conducted focus-group discussions, in-depth interviews and participant observations as data collection methods. This study was embedded in a hospital based genomic study on Sickle Cell Disease at Muhimbili National Hospital in Tanzania. Thematic content analysis was used to analyse the transcripts and field notes. Results Findings from this study show that literacy level has little influence on understanding the research details. According to the participants of this study, the methods used to provide information, the language, and time spent with the study participants were the key factors influencing understanding. The availability of group sessions held before individual consent to allow for a detailed questions and answers format was agreed to be the best method to facilitate the comprehension. Conclusion The quality of the consenting process of participants will be influence by a number of factors. The type of research consented for, where the research will be implemented and who are the potential study participants are amongst the factors that need to be assessed during the consenting. Measures to improve participants' comprehension need to be developed when consenting participants with low literacy level in genomic studies.