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本文引用的文献

1
Consenting futures: professional views on social, clinical and ethical aspects of information feedback to embryo donors in human embryonic stem cell research.自主的未来:关于人类胚胎干细胞研究中向胚胎捐赠者反馈信息的社会、临床和伦理方面的专业观点。
Clin Ethics. 2010 Jun;5(2):77-85. doi: 10.1258/ce.2009.009038.
2
Public bioethics and public engagement: the politics of "proper talk".公共生命伦理学与公共参与:“恰当言说”的政治。
Public Underst Sci. 2010 Mar;19(2):197-211. doi: 10.1177/0963662508096781.
3
Tweeting science and ethics: social media as a tool for constructive public engagement.通过推文传播科学与伦理:社交媒体作为促进公众积极参与的工具
Am J Bioeth. 2010 May;10(5):30-1. doi: 10.1080/15265161003743497.
4
Empty ethics: the problem with informed consent.空洞的伦理:知情同意的问题
Sociol Health Illn. 2003 Nov;25(7):768-92. doi: 10.1046/j.1467-9566.2003.00369.x.
5
Refusing the information paradigm: informed consent, medical research, and patient participation.拒绝信息范式:知情同意、医学研究与患者参与
Health (London). 2009 Jan;13(1):87-106. doi: 10.1177/1363459308097362.
6
Public knowledge and public trust.公众认知与公众信任。
Community Genet. 2006;9(3):204-10. doi: 10.1159/000092658.
7
Volunteer human subjects' understandings of their participation in a biomedical research experiment.志愿者受试者对其参与生物医学研究实验的理解。
Soc Sci Med. 2006 Feb;62(4):998-1008. doi: 10.1016/j.socscimed.2005.06.044. Epub 2005 Aug 8.
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Drawing the line: an analysis of lay people's discussions about the new genetics.
Public Underst Sci. 1998 Apr;7(2):113-33. doi: 10.1177/096366259800700202.
9
False hopes and best data: consent to research and the therapeutic misconception.虚假的希望与最佳数据:研究同意与治疗性误解
Hastings Cent Rep. 1987 Apr;17(2):20-4.

研究、参与和公共生物伦理学:促进具有社会韧性的科学。

Research, engagement and public bioethics: promoting socially robust science.

机构信息

Centre for Population Health Sciences, Medical School, Teviot Place, University of Edinburgh, Edinburgh EH8 9AG, UK.

出版信息

J Med Ethics. 2011 Nov;37(11):698-701. doi: 10.1136/jme.2010.041954. Epub 2011 Jun 14.

DOI:10.1136/jme.2010.041954
PMID:21673017
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC3540974/
Abstract

Citizens today are increasingly expected to be knowledgeable about and prepared to engage with biomedical knowledge. In this article, I wish to reframe this 'public understanding of science' project, and place fresh emphasis on public understandings of research: an engagement with the everyday laboratory practices of biomedicine and its associated ethics, rather than with specific scientific facts. This is not based on an assumption that non-scientists are 'ignorant' and are thus unable to 'appropriately' use or debate science; rather, it is underpinned by an empirically-grounded observation that some individuals may be unfamiliar with certain specificities of particular modes of research and ethical frameworks, and, as a consequence, have their autonomy compromised when invited to participate in biomedical investigations. Drawing on the perspectives of participants in my own sociological research on the social and ethical dimensions of neuroscience, I argue that public understanding of biomedical research and its ethics should be developed both at the community level and within the research moment itself in order to enhance autonomy and promote more socially robust science. Public bioethics will have to play a key role in such an endeavour, and indeed will contribute in important ways to the opening up of new spaces of symmetrical engagement between bioethicists, scientists and wider publics-and hence to the democratisation of the bioethical enterprise.

摘要

今天,人们越来越期望公民了解并准备参与生物医学知识。在本文中,我希望重新构建这个“公众理解科学”项目,并对公众对研究的理解给予新的重视:参与生物医学的日常实验室实践及其相关伦理,而不是特定的科学事实。这并不是基于这样一种假设,即非科学家是“无知的”,因此无法“适当地”使用或辩论科学;相反,这是基于实证观察的结果,即有些人可能不熟悉特定研究模式和伦理框架的某些特殊性,因此,当被邀请参与生物医学研究时,他们的自主权就会受到损害。本文借鉴了我自己关于神经科学社会和伦理维度的社会学研究中参与者的观点,认为应该在社区层面和研究本身的时刻发展对生物医学研究及其伦理的公众理解,以增强自主权并促进更具社会稳健性的科学。公共生物伦理学将必须在这一努力中发挥关键作用,并且确实将以重要方式为生物伦理学家、科学家和更广泛的公众之间的对称参与开辟新的空间做出贡献——从而使生物伦理学事业民主化。