当前偶然发现处理方法的实证分析。
Empirical analysis of current approaches to incidental findings.
作者信息
Lawrenz Frances, Sobotka Suzanne
机构信息
University of Minnesota, MN, USA.
出版信息
J Law Med Ethics. 2008 Summer;36(2):249-55, 211. doi: 10.1111/j.1748-720X.2008.00267.x.
Abstract
This paper presents results found through searching publicly available U.S. data sources for information about how to handle incidental findings (IF) in human subjects research, especially in genetics and genomics research, neuroimaging research, and CT colonography research. We searched the Web sites of 14 federal agencies, 22 professional societies, and 100 universities, as well as used the search engine Google for actual consent forms that had been posted on the Internet. Our analysis of these documents showed that there is very little public guidance available for researchers as to how to deal with incidental findings. Moreover, the guidance available is not consistent.
摘要
本文展示了通过搜索美国公开数据源所得的结果，这些结果涉及在人体受试者研究中，特别是在遗传学和基因组学研究、神经成像研究以及CT结肠造影研究中，如何处理偶发发现（IF）。我们搜索了14个联邦机构、22个专业协会和100所大学的网站，并使用谷歌搜索引擎查找已发布在互联网上的实际知情同意书。我们对这些文件的分析表明，对于研究人员如何处理偶发发现，几乎没有公开的指导意见。此外，现有的指导意见并不一致。
相似文献
1
Empirical analysis of current approaches to incidental findings.当前偶然发现处理方法的实证分析。
J Law Med Ethics. 2008 Summer;36(2):249-55, 211. doi: 10.1111/j.1748-720X.2008.00267.x.
2
An empirical examination of the management of return of individual research results and incidental findings in genomic biobanks.对个体研究结果和基因组生物库偶然发现的返还管理进行实证检验。
Genet Med. 2012 Apr;14(4):444-50. doi: 10.1038/gim.2012.20. Epub 2012 Feb 23.
3
Managing incidental findings in human subjects research: analysis and recommendations.人类受试者研究中偶然发现的管理：分析与建议
J Law Med Ethics. 2008 Summer;36(2):219-48, 211. doi: 10.1111/j.1748-720X.2008.00266.x.
4
Models of consent to return of incidental findings in genomic research.同意返回基因组研究偶然发现结果的模型。
Hastings Cent Rep. 2014 Jul-Aug;44(4):22-32. doi: 10.1002/hast.328. Epub 2014 Jun 11.
5
The law of incidental findings in human subjects research: establishing researchers' duties.人类受试者研究中的偶然发现法则：确立研究者的职责
J Law Med Ethics. 2008 Summer;36(2):361-83, 214. doi: 10.1111/j.1748-720X.2008.00281.x.
6
A national survey of policies on disclosure of conflicts of interest in biomedical research.一项关于生物医学研究中利益冲突披露政策的全国性调查。
N Engl J Med. 2000 Nov 30;343(22):1621-6. doi: 10.1056/NEJM200011303432207.
7
Incidental findings found in "healthy" volunteers during imaging performed for research: current legal and ethical implications.影像学检查中在“健康”志愿者身上偶然发现的结果：当前的法律和伦理影响。
Br J Radiol. 2010 Jun;83(990):456-65. doi: 10.1259/bjr/15877332. Epub 2010 Mar 24.
8
Discovery and disclosure of incidental findings in neuroimaging research.神经影像学研究中偶然发现的发现与披露。
J Magn Reson Imaging. 2004 Nov;20(5):743-7. doi: 10.1002/jmri.20180.
9
Germany: toxicology information on the World Wide Web.
Toxicology. 2003 Aug 21;190(1-2):23-33. doi: 10.1016/s0300-483x(03)00194-x.
10
Patenting of university and non-university public research organisations in Germany: evidence from patent applications for medical research results.德国大学和非大学公共研究机构的专利：来自医学研究成果专利申请的证据。
PLoS One. 2010 Nov 18;5(11):e14059. doi: 10.1371/journal.pone.0014059.
引用本文的文献
1
Research Participant Bill of Rights: Clarifying the Role of Research Physicians.研究参与者权利法案：阐明研究医师的角色。
Ethics Hum Res. 2025 Sep-Oct;47(5):29-36. doi: 10.1002/eahr.60035.
2
Discovery and informing research participants of incidental findings detected in brain magnetic resonance imaging studies: Review and multi-institutional study.脑磁共振成像研究中偶然发现的发现和告知研究参与者：综述和多机构研究。
Brain Behav. 2017 Mar 29;7(5):e00676. doi: 10.1002/brb3.676. eCollection 2017 May.
3
A Systematic Review of the Management of Incidental Findings in Genomic Research.基因组研究中偶发发现管理的系统评价
BEOnline. 2016;3(1):1-21. doi: 10.20541/beonline.2016.0006. Epub 2016 Nov 22.
4
INTRODUCTION: Return of Research Results: What About the Family?引言：研究结果的反馈：家人怎么办？
J Law Med Ethics. 2015 Fall;43(3):437-9. doi: 10.1111/jlme.12287.
5
An implementation framework for the feedback of individual research results and incidental findings in research.一项关于研究中个体研究结果及偶发发现反馈的实施框架。
BMC Med Ethics. 2014 Dec 23;15:88. doi: 10.1186/1472-6939-15-88.
6
Handling incidental findings in neuroimaging research in Japan: current state of research facilities and attitudes of investigators and the general population.日本神经影像研究中偶然发现的处理：研究机构的现状以及研究者和普通民众的态度
Health Res Policy Syst. 2014 Oct 6;12:58. doi: 10.1186/1478-4505-12-58.
7
Incidental findings from clinical sequencing in Greece: reporting experts' attitudes.希腊临床测序中的偶然发现：报告专家的态度。
J Community Genet. 2014 Oct;5(4):383-93. doi: 10.1007/s12687-014-0194-0. Epub 2014 Jul 22.
8
Incidental findings from clinical genome-wide sequencing: a review.临床全基因组测序的偶然发现：综述
J Genet Couns. 2014 Aug;23(4):463-73. doi: 10.1007/s10897-013-9604-4. Epub 2013 May 26.
9
Secondary variants--in defense of a more fitting term in the incidental findings debate.次要变异——在偶然发现辩论中为一个更合适的术语辩护。
Eur J Hum Genet. 2013 Dec;21(12):1331-4. doi: 10.1038/ejhg.2013.89. Epub 2013 May 22.
10
Incidental variants are critical for genomics.偶然变异对于基因组学至关重要。
Am J Hum Genet. 2013 May 2;92(5):648-51. doi: 10.1016/j.ajhg.2013.04.001.
本文引用的文献
1
Managing incidental findings in human subjects research: analysis and recommendations.人类受试者研究中偶然发现的管理：分析与建议
J Law Med Ethics. 2008 Summer;36(2):219-48, 211. doi: 10.1111/j.1748-720X.2008.00266.x.
2
ASHG report. Statement on informed consent for genetic research. The American Society of Human Genetics.美国人类遗传学会报告。关于基因研究知情同意的声明。美国人类遗传学会。
Am J Hum Genet. 1996 Aug;59(2):471-4.
Zotero 插件