语言的遗产:当我们谈论基因组学时,我们说什么,人们听到什么

IF 3.3 Q2 GENETICS & HEREDITY HGG Advances Pub Date : 2023-08-31 eCollection Date: 2023-10-12 DOI:10.1016/j.xhgg.2023.100231
Anna Middleton, Alessia Costa, Richard Milne, Christine Patch, Lauren Robarts, Ben Tomlin, Mark Danson, Sasha Henriques, Jerome Atutornu, Ugbaad Aidid, Daniela Boraschi, Catherine Galloway, Keith Yazmir, Sachi Pettit, Tegan Harcourt, Alannah Connolly, Amanda Li, Jacob Cala, Shelby Lake, Julian Borra, Vivienne Parry
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引用次数: 0

摘要

我们“谈论”遗传学的方式在公众是否对谈论遗传学感到放心方面发挥着至关重要的作用。我们的研究探讨了在向基因组学数据集中已知缺失的社区群体提供遗传学信息时,“我们所说的”和“人们所听到的”之间是否存在差异。我们进行了16个焦点小组,100名英国公众对基因组学了解有限,他们自称属于非洲黑人、加勒比黑人和巴基斯坦血统的社区,以及来自弱势社会经济背景的各种祖先。向参与者提供解释基因组学的口头信息,并分析他们对这些信息的反应。结果表明,通过基因组学的潜在益处来构建基因组学的对话遭到了冷嘲热讽和怀疑。与会者列举了历史和当前的不公正现象以及对私营公司和政府的不信任。相反,在介绍科学的任何细节之前,更富有成效的对话首先承认有些人对基因组学有疑问和合理的担忧。为了使基因组数据集多样化,我们需要在语言上满足公众的需求。我们的研究表明,研究人员和临床医生每天谈论基因组学的方式与预期不同。我们可能会在无意中进一步脱离多元化节目旨在接触的受众。
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The legacy of language: What we say, and what people hear, when we talk about genomics.

The way we "talk" about genetics plays a vital role in whether public audiences feel at ease in having conversations about it. Our research explored whether there was any difference between "what we say" and "what people hear" when providing information about genetics to community groups who are known to be missing from genomics datasets. We conducted 16 focus groups with 100 members of the British public who had limited familiarity with genomics and self-identified as belonging to communities with Black African, Black Caribbean, and Pakistani ancestry as well as people of various ancestral heritage who came from disadvantaged socio-economic backgrounds. Participants were presented with spoken messages explaining genomics and their responses to these were analyzed. Results indicated that starting conversations that framed genomics through its potential benefits were met with cynicism and skepticism. Participants cited historical and present injustices as reasons for this as well as mistrust of private companies and the government. Instead, more productive conversations led with an acknowledgment that some people have questions-and valid concerns-about genomics, before introducing any of the details about the science. To diversify genomic datasets, we need to linguistically meet public audiences where they are at. Our research has demonstrated that everyday talk about genomics, used by researchers and clinicians alike, is received differently than it is likely intended. We may inadvertently be further disengaging the very audiences that diversity programs aim to reach.

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来源期刊
HGG Advances
HGG Advances Biochemistry, Genetics and Molecular Biology-Molecular Medicine
CiteScore
4.30
自引率
4.50%
发文量
69
审稿时长
14 weeks
期刊最新文献
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