人类微生物组研究伦理观
Perspectives on human microbiome research ethics.
作者信息
McGuire Amy L, Achenbaum Laura S, Whitney Simon N, Slashinski Melody J, Versalovic James, Keitel Wendy A, McCurdy Sheryl A
机构信息
Baylor College of Medicine, Houston, TX, USA.
出版信息
J Empir Res Hum Res Ethics. 2012 Jul;7(3):1-14. doi: 10.1525/jer.2012.7.3.1.
Abstract
Study of ethical, legal, and social implications (ELSI) of human microbiome research has been integral to the Human Microbiome Project (HMP). This study explores core ELSI issues that arose during the first phase of the HMP from the perspective of individuals involved in the research. We conducted semi-structured in-depth interviews with investigators and NIH employees ("investigators") involved in the HMP, and with individuals recruited to participate in the HMP Healthy Cohort Study at Baylor College of Medicine ("recruits"). We report findings related to three major ELSI issues: informed consent, data sharing, and return of results. Our findings demonstrate that investigators and recruits were similarly sensitive to these issues yet generally comfortable with study design in light of current knowledge about the microbiome.
摘要
人类微生物组研究的伦理、法律和社会影响（ELSI）研究一直是人类微生物组计划（HMP）不可或缺的一部分。本研究从参与研究的个人角度探讨了HMP第一阶段出现的核心ELSI问题。我们对参与HMP的研究人员和美国国立卫生研究院员工（“研究人员”）以及被招募参加贝勒医学院HMP健康队列研究的个人（“招募对象”）进行了半结构化深度访谈。我们报告了与三个主要ELSI问题相关的研究结果：知情同意、数据共享和结果反馈。我们的研究结果表明，研究人员和招募对象对这些问题同样敏感，但鉴于目前关于微生物组的知识，他们总体上对研究设计感到满意。
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本文引用的文献
1
From patients to partners: participant-centric initiatives in biomedical research.从患者到合作伙伴：生物医学研究中的以参与者为中心的举措。
Nat Rev Genet. 2012 Apr 3;13(5):371-6. doi: 10.1038/nrg3218.
2
The Human Microbiome Project in 2011 and beyond.2011 年及以后的人类微生物组计划。
Cell Host Microbe. 2011 Oct 20;10(4):287-91. doi: 10.1016/j.chom.2011.10.001.
3
"Who owns your poop?": insights regarding the intersection of human microbiome research and the ELSI aspects of biobanking and related studies.“谁拥有你的粪便？”：人类微生物组研究与生物库和相关研究的 ELSI 方面相交的见解。
BMC Med Genomics. 2011 Oct 7;4:72. doi: 10.1186/1755-8794-4-72.
4
Ethical and practical guidelines for reporting genetic research results to study participants: updated guidelines from a National Heart, Lung, and Blood Institute working group.向研究参与者报告基因研究结果的伦理与实践指南：美国国立心肺血液研究所工作组的更新指南
Circ Cardiovasc Genet. 2010 Dec;3(6):574-80. doi: 10.1161/CIRCGENETICS.110.958827.
5
The evolution of consent forms for research: a quarter century of changes.研究同意书的演变：二十五年的变迁
IRB. 2010 May-Jun;32(3):7-11.
6
Forensic identification using skin bacterial communities.利用皮肤细菌群落进行法医鉴定。
Proc Natl Acad Sci U S A. 2010 Apr 6;107(14):6477-81. doi: 10.1073/pnas.1000162107. Epub 2010 Mar 15.
7
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Genome Res. 2009 Dec;19(12):2317-23. doi: 10.1101/gr.096651.109. Epub 2009 Oct 9.
8
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Resolving individuals contributing trace amounts of DNA to highly complex mixtures using high-density SNP genotyping microarrays.使用高密度单核苷酸多态性（SNP）基因分型微阵列解析对高度复杂混合物贡献微量DNA的个体。
PLoS Genet. 2008 Aug 29;4(8):e1000167. doi: 10.1371/journal.pgen.1000167.
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