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本文引用的文献

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Biobank: What's in a Name?生物样本库:名称中有何含义?
Biopreserv Biobank. 2019 Jun;17(3):204-208. doi: 10.1089/bio.2019.29053.mjb.
2
Metaphors matter: from biobank to a library of medical information.隐喻很重要:从生物样本库到医学信息库。
Genet Med. 2018 Aug;20(8):802-805. doi: 10.1038/gim.2017.204. Epub 2017 Dec 21.
3
Translating Biobank Science into Patient-Centered Language.将生物样本库科学转化为以患者为中心的语言。
Biopreserv Biobank. 2018 Feb;16(1):59-63. doi: 10.1089/bio.2017.0089. Epub 2017 Nov 30.
4
The biobank for the molecular classification of kidney disease: research translation and precision medicine in nephrology.肾脏疾病分子分类生物样本库:肾脏病学中的研究转化与精准医学
BMC Nephrol. 2017 Jul 26;18(1):252. doi: 10.1186/s12882-017-0669-4.
5
Genes, cells, and biobanks: Yes, there's still a consent problem.基因、细胞与生物样本库:没错,同意问题依然存在。
PLoS Biol. 2017 Jul 25;15(7):e2002654. doi: 10.1371/journal.pbio.2002654. eCollection 2017 Jul.
6
Development of Plain Language Supplemental Materials for the Biobank Informed Consent Process.生物样本库知情同意流程的简明语言补充材料的开发。
J Cancer Educ. 2017 Dec;32(4):836-844. doi: 10.1007/s13187-016-1029-y.
7
Active recruitment and limited participant-load related to high participation in large population-based biobank studies.主动招募以及与大型人群生物样本库研究中的高参与度相关的有限参与者负荷。
J Clin Epidemiol. 2016 Oct;78:52-62. doi: 10.1016/j.jclinepi.2016.03.009. Epub 2016 Mar 29.
8
An Overview of Biorepositories-Past, Present, and Future.生物样本库的概述——过去、现在与未来
Mil Med. 2015 Oct;180(10 Suppl):57-66. doi: 10.7205/MILMED-D-15-00119.
9
Research participants' perceptions and views on consent for biobank research: a review of empirical data and ethical analysis.研究参与者对生物样本库研究知情同意的认知与观点:实证数据回顾与伦理分析
BMC Med Ethics. 2015 Sep 9;16:60. doi: 10.1186/s12910-015-0053-5.
10
The use of biospecimens in population-based research: a review of the National Cancer Institute's Division of Cancer Control and Population Sciences grant portfolio.生物样本在基于人群的研究中的应用:对美国国立癌症研究所癌症控制与人口科学司资助项目组合的综述。
Biopreserv Biobank. 2014 Aug;12(4):240-5. doi: 10.1089/bio.2014.0009.

语义内涵如何影响人们对生物样本捐赠的关注

How Semantics Connotations May Influence Concerns About Donation of Biospecimens.

机构信息

Department of Community Health Sciences, Cumming School of Medicine, University of Calgary, Calgary, Canada.

Department of Pediatrics, Cumming School of Medicine, The Owerko Centre at the Alberta Children's Hospital Research Institute, University of Calgary, Calgary, Canada.

出版信息

Biopreserv Biobank. 2021 Jun;19(3):156-162. doi: 10.1089/bio.2020.0072. Epub 2020 Nov 11.

DOI:10.1089/bio.2020.0072
PMID:33179960
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC8217592/
Abstract

Human biological specimen (biospecimen) donation is routinely requested for clinical care and research purposes. Successfully engaging patients and research participants in biospecimen donation depends on what they understand these initiatives entail, including their perceptions of risk. Human biospecimens are stored in facilities routinely referenced as biobanks or biorepositories, both of which labels are known to embody a variety of connotations. The words chosen to describe biospecimen facilities may influence decisions about donation. To explore differences in likelihood of donation as a function of the words chosen to represent human biospecimen storage facilities and the commensurate concerns each label evokes. Two-group experimental design. Participants completed a survey about a fictitious undertaking requesting that they consider biospecimen donation. The term used to describe the facility housing the biospecimens differed; one half of the surveys referenced a biobank, and one half referenced a biorepository. Two thousand five hundred ninety-six surveys were distributed; 586 completed surveys were received (response rate: 22.6%). Sixty-three percent of respondents, regardless of whether the label referenced a biobank or biorespository, reported being extremely likely to donate. There were no significant differences between the 2 groups on the 11 concerns sampled. Factor analyses revealed that concerns could be classified in two groups: use-related concerns and person-related concerns. The label biobank evoked significantly lower perception of importance of the person-related concerns sampled (e.g., personal or other benefit, discomfort or inconvenience). Our results suggest that researchers may consider using the word biobank to describe the facility housing the biospecimen, as this term appears less subject to concern biases. These outcomes confirm that misunderstandings or misattributions of words used to refer to biospecimen facilities could deter participation in clinical care or research. Participation may be enhanced through ensuring clear understanding of what biospecimen donation entails and by directly addressing common semantic misunderstandings and associations.

摘要

人体生物标本(生物标本)捐赠通常是为了临床护理和研究目的而提出的。成功地让患者和研究参与者参与生物标本捐赠取决于他们对这些计划的理解,包括他们对风险的看法。人体生物标本存储在通常被称为生物库或生物库的设施中,这两个标签都被认为包含了各种含义。用来描述生物标本设施的词语可能会影响捐赠决策。为了探讨由于选择描述生物标本存储设施的词语以及每个标签引起的相应问题而导致的捐赠可能性的差异。 两组实验设计。参与者完成了一项关于虚构承诺的调查,要求他们考虑生物标本捐赠。用于描述存放生物标本的设施的术语不同;一半的调查提到了生物库,另一半提到了生物库。共发放了 2596 份调查问卷,收到了 586 份完整的调查问卷(回复率:22.6%)。无论标签是指生物库还是生物库,63%的受访者表示非常有可能捐赠。在抽样的 11 个关注点上,两组之间没有显著差异。因素分析表明,关注点可以分为两类:使用相关关注点和人与相关关注点。标签“生物库”引起的与人为相关的关注点(例如个人或其他利益、不适或不便)的重要性感知明显降低。 我们的结果表明,研究人员可能会考虑使用“生物库”一词来描述存放生物标本的设施,因为这个术语似乎不太容易受到关注偏见的影响。这些结果证实,用于指代生物标本设施的词语的误解或错误归因可能会阻碍参与临床护理或研究。通过确保清楚地了解生物标本捐赠的含义,并直接解决常见的语义误解和关联,可以增强参与度。