当你假设时:关于公众对遗传学理解的研究结果与思考

IF 6.1 2区 医学 Q1 CLINICAL NEUROLOGY European Neuropsychopharmacology Pub Date : 2024-10-01 DOI:10.1016/j.euroneuro.2024.08.102
José J. Morosoli , Lucia Colodro-Conde , Fiona K. Barlow , Sarah E. Medland
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引用次数: 0

摘要

在我看来,科学传播不仅仅是专家向非专家传递信息。科学传播是动态的,受到个人特点和社会政治背景的影响。作为科学家,我们不仅要了解受众,还要更好地了解自己。本讲座的主要议题是:(i) 在谈论遗传学时的读写能力和行话的使用;(ii) 我们在处理遗传学信息时的特定认知偏差,包括个人价值观和经历如何影响我们对科学信息的理解:第一部分总结了我们之前在公众理解遗传学方面所做的工作。首先,我将讨论一项关于遗传学知识和公众对精神健康基因检测态度的调查研究。在这项研究中,我们调查了曾参与澳大利亚 QIMR Berghofer 遗传学研究的家庭(样本数=3974),以及英国(样本数=501)和美国(样本数=500)的普通人群。结果显示,人们对精神疾病基因检测的兴趣很高,但此类信息可能带来的负面影响也很大,超过三分之一的参与者对了解个人基因倾向表示严重担忧。较高的遗传知识水平减轻了人们的担忧,从而减少了人们对了解几种精神健康问题的高遗传倾向的担忧,也减少了人们对高遗传倾向者的偏见。其次,我将讨论我们最近对涉及全基因组关联研究(GWAS)的网络媒体文章进行的审查。我们的研究表明,我们可能错失了一个提高人们对基因研究结果的普遍认识的重要机会。事实上,95% 有关全基因组关联研究的新闻网站和博客所使用的语言过于复杂,大多数成年人都无法理解。大多数新闻文章使用了 "RNA"、"风险"、"基因"、"基因组 "和 "DNA "等术语,而 "标记"、"多态性 "或 "等位基因 "等术语则很少出现。为了说明这些结果的来龙去脉,我将介绍我们调查中的新数据,这些数据显示了 "遗传学成人识字率快速评估"(REAL-G)的修改版结果,该结果评估了公众对 "遗传学"、"染色体"、"易感性"、"突变"、"遗传变异"、"遗传 "和 "多基因 "等术语的熟悉程度。我将简要谈谈 "框架 "的概念,即信息的解读如何受到某些词语或图像存在与否的影响。例如,关于全球基因组研究的媒体倾向于关注 "风险"(63.7%的文章提到),而不是 "易感性"(12.2%)或 "保护"(11.3%)--"保护 "等词的词干。也就是说,我们不是被动甚至客观地接受科学信息,而是有策略地选择与我们的目标相一致的事实,或忽略特别具有威胁性的信息。我将从当前公众对气候变化态度研究的角度来阐述这项工作,这可以说是近来科学传播研究中最多产的学科。在演讲的最后,我将提及该领域的一些良好实践范例,包括QIMR Berghofer研究所重新联系土著居民和托雷斯海峡岛民的磋商过程。
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WHEN YOU ASSUME: RESULTS AND REFLECTIONS FROM STUDIES ON PUBLIC UNDERSTANDING OF GENETICS
From my perspective, science communication goes beyond the mere transmission of information from experts to non-experts. Science communication is dynamic and influenced by personal characteristics and sociopolitical context. As scientists, we not only need to know our audience but also understand ourselves better. The main topics of this presentation are (i) literacy and the use of jargon when talking about genetics; and (ii) specific cognitive biases in how we process information about genetics, including how personal values and experiences can influence how we understand scientific information.
The talk will be structured in two sections: The first section synthesises our previous work on public understanding of genetics. First, I will discuss a survey study on genetic literacy and public attitudes towards genetic testing in mental health. In this study, we surveyed families that had previously participated in genetic research studies at QIMR Berghofer, Australia (N=3,974), and the general population from the U.K. (N=501) and the U.S. (N=500). Results showed a high interest in psychiatric genetic testing, but the potential for negative impact of such information is also high, with more than a third of the participants showing serious concerns relating to learning about personal genetic predisposition. Concerns were mitigated by higher levels of genetic literacy, leading to less worry about coping with learning about a high genetic predisposition for several mental health problems and less prejudice against people with a high genetic predisposition. Second, I will discuss our recent review on online media articles covering genome-wide association studies (GWAS). We show that we might be missing a major opportunity for increasing general knowledge about genetic findings. Indeed, ∼95% of the news sites and blogs on GWAS used a language too complex to be understood by most adults. Most news articles used the terms ‘RNA’, ‘risk’, ‘gene’, ‘genome’, and ‘DNA’, while the terms ‘marker, ‘polymorphism’, or ‘allele’, rarely appeared. To contextualise these results, I will present new data from our survey showing the results from a modified version of the Rapid Estimate of Adult Literacy in Genetics (REAL-G), which evaluates how familiar the public is with the terms ‘genetics’, ‘chromosome’, ‘susceptibility’, ‘mutation’, ‘genetic variant’, ‘heredity’, and ‘polygenic’. I will briefly touch on the concept of ‘framing’, or how interpretation of information can be influenced by the presence or absence of certain words or images. For example, media on GWAS tends to focus on ‘risk’ (mentioned in 63.7% of articles) versus ‘susceptibility’ (12.2%) or ‘protect’ (11.3%) – the stem of words such as ‘protective’.
In the second section, I will discuss previous research on genetic determinism as a cognitive bias, as well as the role of motivated cognition. That is, we are not passive or even objective recipients of scientific information, but rather we strategically choose facts that align with our goals or ignore particularly threatening information. I will frame this work from the perspective of current research on public attitudes towards climate change, which arguably has become the most prolific discipline in science communication research in recent times. I will finish the presentation mentioning some examples of good practices in the field, including the consultation process to recontact Aboriginal and Torres Strait Islander people at QIMR Berghofer.
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来源期刊
European Neuropsychopharmacology
European Neuropsychopharmacology 医学-精神病学
CiteScore
10.30
自引率
5.40%
发文量
730
审稿时长
41 days
期刊介绍: European Neuropsychopharmacology is the official publication of the European College of Neuropsychopharmacology (ECNP). In accordance with the mission of the College, the journal focuses on clinical and basic science contributions that advance our understanding of brain function and human behaviour and enable translation into improved treatments and enhanced public health impact in psychiatry. Recent years have been characterized by exciting advances in basic knowledge and available experimental techniques in neuroscience and genomics. However, clinical translation of these findings has not been as rapid. The journal aims to narrow this gap by promoting findings that are expected to have a major impact on both our understanding of the biological bases of mental disorders and the development and improvement of treatments, ideally paving the way for prevention and recovery.
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