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提高生物样本库西班牙语同意书的翻译质量及文化适应性

Improving Translation and Cultural Appropriateness of Spanish-Language Consent Materials for Biobanks.

作者信息

Brelsford Kathleen M, Ruiz Ernesto, Hammack Catherine M, Beskow Laura M

机构信息

Research assistant professor in the Center for Biomedical Ethics & Society at Vanderbilt University Medical Center.

Postdoctoral fellow in the Department of Family and Community Medicine at Meharry Medical College.

出版信息

Ethics Hum Res. 2019 Sep;41(5):16-27. doi: 10.1002/eahr.500028.

DOI:10.1002/eahr.500028
PMID:31541540
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC6856797/
Abstract

A growing proportion of prospective research participants in the United States speak limited or no English. We conducted cognitive interviews with native Spanish speakers to test Spanish-language translations of simplified and traditional biobank consent forms. Comprehension was generally high and did not differ by form. Most of those who received the simplified form felt it contained the right amount of information, compared with fewer than half of those who received the traditional form. Qualitative results allowed us to identify overarching issues related to tone, formality, and voice that may affect prospective participants' trust and willingness to participate. Certain characteristics of written Spanish are seemingly at odds with recommended actions to simplify consent forms; thus, even when significant empirical effort has been expended to develop simplified consent materials in English, additional work is needed to ensure the accuracy, comprehensibility, and cultural-congruence of Spanish-language translations.

摘要

在美国,越来越多的潜在研究参与者英语水平有限或不会说英语。我们对母语为西班牙语的人进行了认知访谈,以测试简化版和传统生物样本库同意书的西班牙语翻译。理解程度总体较高,且两种形式之间没有差异。与收到传统形式同意书的人中不到一半的人相比,大多数收到简化版同意书的人认为其包含了适量的信息。定性结果使我们能够识别与语气、正式程度和口吻相关的总体问题,这些问题可能会影响潜在参与者的信任度和参与意愿。书面西班牙语的某些特征似乎与简化同意书的建议措施不一致;因此,即使在为开发英语简化同意材料付出了大量实证努力之后,仍需要开展额外工作,以确保西班牙语翻译的准确性、可理解性和文化适应性。

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本文引用的文献

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Clin Trials. 2018 Dec;15(6):557-566. doi: 10.1177/1740774518801591. Epub 2018 Oct 8.
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Encouraging Participation And Transparency In Biobank Research.鼓励生物库研究的参与和透明化。
Health Aff (Millwood). 2018 Aug;37(8):1313-1320. doi: 10.1377/hlthaff.2018.0159.
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The Right to Know: A Revised Standard for Reporting Incidental Findings.知情同意权:偶然发现报告的修订标准。
Hastings Cent Rep. 2018 Mar;48(2):22-32. doi: 10.1002/hast.836.
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Community recommendations on biobank governance: Results from a deliberative community engagement in California.生物样本库管理的社区建议:加利福尼亚州一次审议性社区参与的结果
PLoS One. 2017 Feb 24;12(2):e0172582. doi: 10.1371/journal.pone.0172582. eCollection 2017.
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The meaning of genetic research results: reflections from individuals with and without a known genetic disorder.基因研究结果的意义:来自有和没有已知遗传疾病个体的思考
J Empir Res Hum Res Ethics. 2011 Dec;6(4):30-40. doi: 10.1525/jer.2011.6.4.30.
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How to achieve informed consent for research from Spanish-speaking individuals with low literacy: a qualitative report.如何从低识字率的西班牙语个体中获得研究的知情同意:定性报告。
J Health Commun. 2010;15 Suppl 2:172-82. doi: 10.1080/10810730.2010.499990.
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Public Health Genomics. 2010;13(6):368-77. doi: 10.1159/000276767. Epub 2010 Jan 15.
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