Bukini Daima, deVries Jantina, Treadwell Marsha, Anie Kofi, Dennis-Antwi Jemima, Kamga Karene Kengne, McCurdy Sheryl, Ohene-Frempong Kwaku, Makani Julie, Wonkam Ambroise
a Sickle Cell Disease Programme, Muhimbili University of Health and Allied Sciences , Dar es Salaam , Tanzania.
b Department of Medicine, Faculty of Health Sciences, University of Cape Town , Cape Town , South Africa.
AJOB Empir Bioeth. 2019 Jul-Sep;10(3):182-189. doi: 10.1080/23294515.2019.1645759. Epub 2019 Aug 5.
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. We involved 64 participants in 15 individual interviews or in 49 focus-group discussions with research participants in rural and urban Tanzania ( = 20), Ghana ( = 30), and Cameroon ( = 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. 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.
通常认为，在非洲，关于参与研究的决定可能不仅基于个人思考，还基于与他人的讨论。一些作者认为，这种决策反映了一种更传统的非洲社群主义世界观；对这种观点的一种批评是，它缺乏实证依据。在本研究中，我们探讨了非洲三个国家（即加纳、喀麦隆和坦桑尼亚）镰状细胞基因组学研究的入组决策。特别是，我们专注于探讨共同决策在参与基因组研究方面的作用。我们让64名参与者参与了15次个人访谈，或与坦桑尼亚农村和城市地区（n = 20）、加纳（n = 30）和喀麦隆（n = 14）的研究参与者进行了49次焦点小组讨论。我们使用了一个 vignette 来探讨儿童参与镰状细胞基因组学研究的入组决策。数据导入 NVivo11 并使用主题内容分析法进行分析。我们的研究结果表明，来自农村和城市地区的大多数参与者更喜欢自己做出个人决定，而不咨询大家庭或社区领袖。只有那些被认为在某种程度上脆弱的个人才被认为共同决策是必要的。我们发现，作为研究参与决策的主要过程，共同决策得到的支持非常有限。虽然咨询被认为对支持个人决策很重要，特别是当父母被认为脆弱时，但我们的数据中没有迹象表明，在非洲研究背景下，共同决策将是寻求研究参与同意的更重要或更有价值的方式。
