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传递遗传和基因组信息:健康素养与数字能力考量

Communicating genetic and genomic information: health literacy and numeracy considerations.

作者信息

Lea D H, Kaphingst K A, Bowen D, Lipkus I, Hadley D W

机构信息

National Human Genome Research Institute, NIH, Bethesda, MD 20892-2070, USA.

出版信息

Public Health Genomics. 2011;14(4-5):279-89. doi: 10.1159/000294191. Epub 2010 Apr 20.

DOI:10.1159/000294191
PMID:20407217
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC2909377/
Abstract

Genomic research is transforming our understanding of the role of genes in health and disease. These advances, and their application to common diseases that affect large segments of the general population, suggest that researchers and practitioners in public health genomics will increasingly be called upon to translate genomic information to individuals with varying levels of health literacy and numeracy. This paper discusses the current state of research regarding public understanding of genetics and genomics, the influence of health literacy and numeracy on genetic communication, and behavioral responses to genetic and genomic information. The existing research suggests that members of the general public have some familiarity with genetic and genomic terms but have gaps in understanding of underlying concepts. Findings from the limited research base to date indicate that health literacy affects understanding of print and oral communications about genetic and genomic information. Numeracy is also likely to be an important predictor of being able to understand and apply this information, although little research has been conducted in this area to date. In addition, although some research has examined behavior change in response to the receipt of information about genetic risk for familial disorders and genomic susceptibility to common, complex diseases, the effects of health literacy and numeracy on these responses have not been examined. Potential areas in which additional research is needed are identified and practical suggestions for presenting numeric risk information are outlined. Public health genomics researchers and practitioners are uniquely positioned to engage in research that explores how different audiences react to and use genomic risk information.

摘要

基因组研究正在改变我们对基因在健康与疾病中所起作用的理解。这些进展及其在影响广大普通人群的常见疾病中的应用表明,公共卫生基因组学领域的研究人员和从业者将越来越多地被要求把基因组信息转化给具有不同健康素养和数字能力水平的个体。本文讨论了关于公众对遗传学和基因组学理解的研究现状、健康素养和数字能力对基因交流的影响,以及对基因和基因组信息的行为反应。现有研究表明,普通公众对基因和基因组术语有一定程度的熟悉,但对基本概念的理解存在差距。迄今为止有限的研究基础得出的结果表明,健康素养会影响对有关基因和基因组信息的书面及口头交流的理解。数字能力也很可能是能否理解和应用这些信息的一个重要预测因素,尽管目前该领域的研究很少。此外,虽然一些研究考察了在收到关于家族性疾病的遗传风险和常见复杂疾病的基因组易感性信息后行为的变化,但尚未研究健康素养和数字能力对这些反应的影响。确定了需要进一步研究的潜在领域,并概述了呈现数字风险信息的实用建议。公共卫生基因组学研究人员和从业者处于独特地位,能够开展探索不同受众如何对基因组风险信息做出反应和使用这些信息的研究。

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