Exploring the Role of Shared Decision Making in the Consent Process for Pediatric Genomics Research in Cameroon, Tanzania, and Ghana.
Exploring the Role of Shared Decision Making in the Consent Process for Pediatric Genomics Research in Cameroon, Tanzania, and Ghana.
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DOI：
10.1080/23294515.2019.1645759
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发表时间：
2019-07-01
影响因子：
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通讯作者：
Wonkam, Ambroise
中科院分区：
文献类型：
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作者：
Bukini, Daima;deVries, Jantina;Wonkam, Ambroise
背景资料：人们通常认为，在非洲，关于参与研究的决定可能不仅基于个人的思考，而且也基于与他人的讨论。一些作者认为，这种决策反映了一种更传统的社群主义非洲世界观;对这种观点的一种批评是，它缺乏经验基础。在这项研究中，我们探讨了在非洲三个国家，即加纳，喀麦隆和坦桑尼亚的镰状细胞基因组学研究招生决策。特别是，我们专注于探索参与基因组研究的共同决策的作用。结果如下：我们涉及64名参与者在15个个人访谈或49个焦点小组讨论与研究参与者在农村和城市坦桑尼亚（n=20），加纳（n=30），喀麦隆（n=14）。我们使用了一个小插曲，探讨决策周围的儿童入学镰状细胞基因组学研究。将数据导入NVivo 11，并使用主题内容分析进行分析。我们的研究结果表明，大多数来自农村和城市环境的参与者更喜欢自己做出个人决定，而不是与大家庭或社区领导人协商。只有那些被认为在某种程度上易受伤害的个人才认为有必要共同决策。结论：我们发现非常有限的支持，共同决策的主要过程，决策参与研究。虽然磋商被认为是重要的，以支持个人的决策，特别是当父母被视为脆弱的，有没有在我们的数据表明，共同决策将是一个更重要的或有价值的手段，寻求同意参与研究在非洲的研究背景。
Background: It is customarily perceived that in Africa, decisions around research participation may be based not only on individual reflection but also on discussions with others. Some authors have argued that such decision making is reflective of a more traditional communitarian African worldview; one critique of such a perspective is that it is lacking an empirical grounding. In this study, we explore decision making around enrollment in sickle cell genomics research in three countries in Africa, namely, Ghana, Cameroon, and Tanzania. Particularly, we focus on exploring the role of shared decision making with regard to participating in genomic studies. Results: We involved 64 participants in 15 individual interviews or in 49 focus-group discussions with research participants in rural and urban Tanzania (n=20), Ghana (n=30), and Cameroon (n=14). We used a vignette to explore decision making around enrollment of children in sickle cell genomics research. Data were imported in NVivo11 and analyzed using thematic content analysis. Our findings indicate that the majority of the participants from both rural and urban settings prefer to make their own individual decisions and not consult with extended family or community leaders. Shared decision making was only considered necessary for individuals who were perceived to be in some way vulnerable. Conclusion: We found very limited support for shared decision making as the primary process for decision making about research participation. While consultation was considered important to support individual decision making, particularly when parents were perceived as vulnerable, there was no suggestion in our data that shared decision making would be a more important or valuable means of seeking consent for research participation in the African research context.