PDF(Pubmed)
Abstract：
BACKGROUND: A fundamental ethical issue in African genomics research is how socio-cultural factors impact perspectives, acceptance, and utility of genomic information, especially in stigmatizing conditions like orofacial clefts (OFCs). Previous research has shown that gatekeepers (e.g., religious, political, family or community leaders) wield considerable influence on the decision-making capabilities of their members, including health issues. Thus, their perspectives can inform the design of engagement strategies and increase exposure to the benefits of genomics testing/research. This is especially important for Africans underrepresented in genomic research. Our study aims to investigate the perspectives of gatekeepers concerning genomic risk information (GRI) in the presence of OFCs in a sub-Saharan African cohort.
METHODS: Twenty-five focus group discussions (FGDs) consisting of 214 gatekeepers (religious, community, ethnic leaders, and traditional birth attendants) in Lagos, Nigeria, explored the opinions of participants on genomic risk information (GRI), OFC experience, and the possibility of involvement in collaborative decision-making in Lagos, Nigeria. Transcripts generated from audio recordings were coded and analyzed in NVivo using thematic analysis.
RESULTS: Three main themes-knowledge, beliefs, and willingness to act-emerged from exploring the perspective of gatekeepers about GRI in this group. We observed mixed opinions regarding the acceptance of GRI. Many participants believed their role is to guide and support members when they receive results; this is based on the level of trust their members have in them. However, participants felt they would need to be trained by medical experts to do this. Also, religious and cultural beliefs were crucial to determining participants\' understanding of OFCs and the acceptance and utilization of GRI.
CONCLUSIONS: Incorporating cultural sensitivity into public engagement could help develop appropriate strategies to manage conflicting ideologies surrounding genomic information in African communities. This will allow for more widespread access to the advances in genomics research in underrepresented populations. We also recommend a synergistic relationship between community health specialists/scientists, and community leaders, including spiritual providers to better understand and utilize GRI.
METHODS: Twenty-five focus group discussions (FGDs) consisting of 214 gatekeepers (religious, community, ethnic leaders, and traditional birth attendants) in Lagos, Nigeria, explored the opinions of participants on genomic risk information (GRI), OFC experience, and the possibility of involvement in collaborative decision-making in Lagos, Nigeria. Transcripts generated from audio recordings were coded and analyzed in NVivo using thematic analysis.
RESULTS: Three main themes-knowledge, beliefs, and willingness to act-emerged from exploring the perspective of gatekeepers about GRI in this group. We observed mixed opinions regarding the acceptance of GRI. Many participants believed their role is to guide and support members when they receive results; this is based on the level of trust their members have in them. However, participants felt they would need to be trained by medical experts to do this. Also, religious and cultural beliefs were crucial to determining participants\' understanding of OFCs and the acceptance and utilization of GRI.
CONCLUSIONS: Incorporating cultural sensitivity into public engagement could help develop appropriate strategies to manage conflicting ideologies surrounding genomic information in African communities. This will allow for more widespread access to the advances in genomics research in underrepresented populations. We also recommend a synergistic relationship between community health specialists/scientists, and community leaders, including spiritual providers to better understand and utilize GRI.
摘要：
背景：非洲基因组学研究中的一个基本伦理问题是社会文化因素如何影响观点，接受,和基因组信息的效用，尤其是在口面裂痕(OFC)等污名化的情况下。先前的研究表明，看门人(例如，宗教,政治,家庭或社区领导人)对其成员的决策能力产生相当大的影响，包括健康问题。因此，他们的观点可以为参与策略的设计提供信息，并增加基因组学测试/研究的好处。这对基因组研究中代表性不足的非洲人尤其重要。我们的研究旨在调查在撒哈拉以南非洲队列中存在OFC的情况下，看门人对基因组风险信息（GRI）的看法。
方法：二十五个焦点小组讨论（FGD），由214名看门人组成（宗教，社区,民族领袖,和传统的助产士)在拉各斯，尼日利亚,探索参与者对基因组风险信息(GRI)的看法，OFC经验,以及参与拉各斯合作决策的可能性，尼日利亚。使用主题分析在NVivo中对从音频记录生成的转录本进行编码和分析。
结果：三个主要主题-知识，信仰,以及采取行动的意愿是通过探索该群体中GRI的看门人的观点而产生的。我们观察到关于接受GRI的不同意见。许多参与者认为，他们的作用是在成员收到结果时指导和支持他们；这是基于他们的成员对他们的信任程度。然而,参与者认为他们需要接受医学专家的培训才能做到这一点。此外，宗教和文化信仰对于确定参与者对OFC的理解以及对GRI的接受和利用至关重要。
结论：将文化敏感性纳入公众参与可以帮助制定适当的策略来管理非洲社区基因组信息的冲突意识形态。这将允许在代表性不足的人群中更广泛地获得基因组学研究的进展。我们还建议社区健康专家/科学家之间建立协同关系，和社区领袖，包括精神提供者，以更好地理解和利用GRI。
方法：二十五个焦点小组讨论（FGD），由214名看门人组成（宗教，社区,民族领袖,和传统的助产士)在拉各斯，尼日利亚,探索参与者对基因组风险信息(GRI)的看法，OFC经验,以及参与拉各斯合作决策的可能性，尼日利亚。使用主题分析在NVivo中对从音频记录生成的转录本进行编码和分析。
结果：三个主要主题-知识，信仰,以及采取行动的意愿是通过探索该群体中GRI的看门人的观点而产生的。我们观察到关于接受GRI的不同意见。许多参与者认为，他们的作用是在成员收到结果时指导和支持他们；这是基于他们的成员对他们的信任程度。然而,参与者认为他们需要接受医学专家的培训才能做到这一点。此外，宗教和文化信仰对于确定参与者对OFC的理解以及对GRI的接受和利用至关重要。
结论：将文化敏感性纳入公众参与可以帮助制定适当的策略来管理非洲社区基因组信息的冲突意识形态。这将允许在代表性不足的人群中更广泛地获得基因组学研究的进展。我们还建议社区健康专家/科学家之间建立协同关系，和社区领袖，包括精神提供者，以更好地理解和利用GRI。
