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本文引用的文献

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Public views on the donation and use of human biological samples in biomedical research: a mixed methods study.公众对生物医学研究中人类生物样本捐赠和使用的看法:一项混合方法研究。
BMJ Open. 2013 Aug 7;3(8):e003056. doi: 10.1136/bmjopen-2013-003056.
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Newborn screening cards: a legal quagmire.新生儿筛查卡片:法律的泥潭。
Med J Aust. 2011 Mar 21;194(6):319-22. doi: 10.5694/j.1326-5377.2011.tb02985.x.
3
Public opinion about the importance of privacy in biobank research.公众对生物样本库研究中隐私重要性的看法。
Am J Hum Genet. 2009 Nov;85(5):643-54. doi: 10.1016/j.ajhg.2009.10.002. Epub 2009 Oct 29.
4
Regulating biobanks: a twelve-point typological tool.
Med Law Rev. 2009 Autumn;17(3):313-46. doi: 10.1093/medlaw/fwp016. Epub 2009 Aug 11.
5
Certificates should be strengthened.证书应予以强化。
Science. 2009 Mar 6;323(5919):1289-90; author reply 1298-90. doi: 10.1126/science.323.5919.1289.
6
Research ethics. Certificates of confidentiality and compelled disclosure of data.研究伦理。保密证书与数据的强制披露。
Science. 2008 Nov 14;322(5904):1054-5. doi: 10.1126/science.1164100.
7
Will forensic use of medical biobanks decrease public trust in healthcare services? Some empirical observations.法医学对生物样本库的使用会降低公众对医疗服务的信任吗?一些实证观察。
Scand J Public Health. 2007;35(4):442-4. doi: 10.1080/14034940701280768.
8
Bioethics in Sweden.
Camb Q Healthc Ethics. 2006 Summer;15(3):285-93. doi: 10.1017/s0963180106060361.
9
The expanding use of DNA in law enforcement: what role for privacy?
J Law Med Ethics. 2006 Summer;34(2):153-64. doi: 10.1111/j.1748-720X.2006.00024.x.
10
Forensic genetics and ethical, legal and social implications beyond the clinic.法医遗传学及其临床以外的伦理、法律和社会影响。
Nat Genet. 2004 Nov;36(11 Suppl):S8-12. doi: 10.1038/ng1594.

研究生物样本库的法医学用途:是否应告知捐赠者?

Forensic uses of research biobanks: should donors be informed?

作者信息

Dranseika Vilius, Piasecki Jan, Waligora Marcin

机构信息

REMEDY, Research Ethics in Medicine Study Group, Department of Philosophy and Bioethics, Jagiellonian University Medical College, Michalowskiego 12, 31-126, Krakow, Poland.

Department of Logic and History of Philosophy, Vilnius University, Vilnius, Lithuania.

出版信息

Med Health Care Philos. 2016 Mar;19(1):141-6. doi: 10.1007/s11019-015-9667-0.

DOI:10.1007/s11019-015-9667-0
PMID:26419480
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC4805715/
Abstract

Occasional reports in the literature suggest that biological samples collected and stored for scientific research are sometimes accessed and used for a variety of forensic purposes. However, donors are almost never informed about this possibility. In this paper we argue that the possibility of forensic access may constitute a relevant consideration at least to some potential research subjects in deciding whether to participate in research. We make the suggestion that if some type of forensic access to research collections is likely to be perceived by the subjects as a reason against donating their biological materials, there are good ethical reasons to make this type of access impossible or at least severely restricted. We also provide an ethical argument for the claim that, if a total ban on this type of forensic access cannot be achieved, potential research subjects should be informed about the extent to which this type of forensic access is possible.

摘要

文献中偶尔有报道称,为科学研究而收集和储存的生物样本有时会被获取并用于各种法医目的。然而,捐赠者几乎从未被告知这种可能性。在本文中,我们认为,法医获取样本的可能性至少对一些潜在的研究对象在决定是否参与研究时可能是一个相关的考虑因素。我们建议,如果研究对象可能会将某种类型的法医获取研究样本视为反对捐赠其生物材料的理由,那么从伦理角度出发,有充分的理由使其无法进行或至少受到严格限制。我们还为以下观点提供了伦理依据:如果无法完全禁止这种类型的法医获取,那么应该告知潜在的研究对象这种法医获取的可能性有多大。