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The moral concerns of biobank donors: the effect of non-welfare interests on willingness to donate.生物样本库捐赠者的道德考量:非福利利益对捐赠意愿的影响。
Life Sci Soc Policy. 2016;12:3. doi: 10.1186/s40504-016-0036-4. Epub 2016 Mar 11.
2
Governing the research-care divide in clinical biobanking: Dutch perspectives.临床生物样本库中研究与医疗之间差异的管理:荷兰视角
Life Sci Soc Policy. 2015;11:7. doi: 10.1186/s40504-015-0025-z. Epub 2015 Aug 6.
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Constructing populations in biobanking.生物样本库中的群体构建
Life Sci Soc Policy. 2015;11:5. doi: 10.1186/s40504-015-0024-0. Epub 2015 Jul 21.
4
Public participation in genetic databases: crossing the boundaries between biobanks and forensic DNA databases through the principle of solidarity.公众对基因数据库的参与:通过团结原则跨越生物样本库与法医DNA数据库之间的界限。
J Med Ethics. 2015 Oct;41(10):820-4. doi: 10.1136/medethics-2014-102126. Epub 2015 Jul 2.
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About DNA databasing and investigative genetic analysis of externally visible characteristics: A public survey.关于DNA数据库建设及外部可见特征的调查性基因分析:一项公众调查。
Forensic Sci Int Genet. 2015 Jul;17:163-172. doi: 10.1016/j.fsigen.2015.05.010. Epub 2015 May 14.
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The impact of commercialisation and genetic data sharing arrangements on public trust and the intention to participate in biobank research.商业化和基因数据共享安排对公众信任及参与生物样本库研究意愿的影响。
Public Health Genomics. 2015;18(3):160-72. doi: 10.1159/000375441. Epub 2015 Mar 13.
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Public's attitudes on participation in a biobank for research: an Italian survey.公众对参与生物样本库用于研究的态度:一项意大利调查。
BMC Med Ethics. 2014 Nov 26;15:81. doi: 10.1186/1472-6939-15-81.
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Neglected ethical issues in biobank management: Results from a U.S. study.生物样本库管理中被忽视的伦理问题:一项美国研究的结果。
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年轻人对生物样本库和DNA图谱分析的认知:对意大利大学生进行问卷调查的结果。

Young people's awareness on biobanking and DNA profiling: results of a questionnaire administered to Italian university students.

作者信息

Tozzo Pamela, Fassina Antonio, Caenazzo Luciana

机构信息

Department of Molecular Medicine, University of Padova, via Falloppio 50, 35121, Padova, Italy.

出版信息

Life Sci Soc Policy. 2017 Dec;13(1):9. doi: 10.1186/s40504-017-0055-9. Epub 2017 Jun 10.

DOI:10.1186/s40504-017-0055-9
PMID:28601979
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC5466852/
Abstract

Current policy approaches to social and ethical issues surrounding biobanks manifest lack of public information given by researchers and government, despite the evidence that Italian citizens are well informed about technical and other public perspectives of biotechnologies. For this reason, the focus of our survey was to interview our University's students on these aspects. The sample consisted of Padua University students (N = 959), who were administered a questionnaire comprising eight questions covering their knowledge about biobanks, their perception of the related benefits and risks, their willingness to donate samples to a biobank for research purposes, their attitude to having their own DNA profile included in a forensic DNA database, and the reasons behind their answers. The vast majority of the students invited to take part in the survey completed the questionnaire, and the number of participants sufficed to be considered representative of the target population. Despite the respondents' unfamiliarity with the topics explored, suggested by the huge group of respondents answering "I don't know" to the questions regarding Itaian regulation and reality, their answers demonstrate a general agreement to participate in a biobanking scheme for research purposes, as expressed by the 91% of respondents who were reportedly willing to donate their samples. As for the idea of a forensic DNA database, 35% of respondents said they would agree to having their profile included in such a database, even if they were not fully aware of the benefits and risks of such action.This study shows that Italian people with a higher education take a generally positive attitude to the idea of donating biological samples. It contributes to empirical evidence of what Italy's citizens understand about biobanking, and of their willingness to donate samples for research purposes, and also to have their genetic profiles included in a national forensic DNA database. Our findings may have clear implications for the policy discussion on biobanks in Italy, in particular it is important to take into account the Italian population's poor consciousness of forensic DNA database, in order to ensure a better interaction between policy makers and citizens and to make them more aware of the need to balance the individual's rights and the security of society.

摘要

尽管有证据表明意大利公民对生物技术的技术和其他公众观点有充分了解,但目前围绕生物样本库的社会和伦理问题的政策方法显示出研究人员和政府缺乏向公众提供信息的情况。出于这个原因,我们调查的重点是就这些方面采访我校的学生。样本包括帕多瓦大学的学生(N = 959),他们接受了一份包含八个问题的问卷,这些问题涵盖了他们对生物样本库的了解、他们对相关益处和风险的认知、他们为研究目的向生物样本库捐赠样本的意愿、他们对将自己的DNA图谱纳入法医DNA数据库的态度以及他们回答背后的原因。绝大多数被邀请参加调查的学生完成了问卷,参与者的数量足以被视为代表目标人群。尽管大量受访者对有关意大利法规和实际情况的问题回答“我不知道”,表明他们对所探讨的主题不熟悉,但他们的回答显示出总体上同意参与用于研究目的的生物样本库计划,据报道91%的受访者愿意捐赠样本就表达了这一点。至于法医DNA数据库的想法,35%的受访者表示他们会同意将自己的图谱纳入这样一个数据库,即使他们并未完全意识到这种行动的益处和风险。这项研究表明,受过高等教育的意大利人对捐赠生物样本的想法总体上持积极态度。它为意大利公民对生物样本库的理解以及他们为研究目的捐赠样本并将其基因图谱纳入国家法医DNA数据库的意愿提供了实证证据。我们的研究结果可能对意大利生物样本库的政策讨论有明确影响,特别是考虑到意大利民众对法医DNA数据库的意识淡薄很重要,以便确保政策制定者与公民之间有更好的互动,并使他们更意识到平衡个人权利与社会安全的必要性。