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营养基因组学研究中的知情同意缺失

Uninformed consent in nutrigenomic research.

作者信息

Janssens A Cecile Jw, Bunnik Eline M, Burke Wylie, Schermer Maartje Hn

机构信息

Department of Epidemiology, Rollins School of Public Health, Emory University, Atlanta, GA, USA.

Department of Clinical Genetics/EMGO Institute for Health and Care Research, Section Community Genetics, VU University Medical Center, Amsterdam, The Netherlands.

出版信息

Eur J Hum Genet. 2017 Jun;25(7):789-790. doi: 10.1038/ejhg.2017.63. Epub 2017 May 10.

DOI:10.1038/ejhg.2017.63
PMID:28488677
原文链接:https://pmc.ncbi.nlm.nih.gov/articles/PMC5520075/
Abstract

Genetic testing for personalizing diet and wellness programs is performed without extensive counseling that informs about the potential implications of knowing one's genotype status. Genetic counseling seems redundant for genes that impact the effect of diet on biomarkers such as cholesterol and blood pressure, but the same genes may have pleiotropic effects that cannot be ignored. A well-known example is the APOE gene, which is implicated in cholesterol regulation and is a major risk factor for Alzheimer's disease. Not fully informing participants about the major pleiotropic effects of genes has ethical implications and invalidates informed consent.

摘要

用于个性化饮食和健康计划的基因检测在没有广泛咨询的情况下进行,这种咨询应告知了解个人基因型状态的潜在影响。对于影响饮食对胆固醇和血压等生物标志物作用的基因,基因咨询似乎多余,但相同的基因可能具有不可忽视的多效性作用。一个著名的例子是APOE基因,它与胆固醇调节有关,是阿尔茨海默病的主要危险因素。没有充分告知参与者基因的主要多效性作用具有伦理意义,并使知情同意无效。

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Uninformed consent in nutrigenomic research.营养基因组学研究中的知情同意缺失
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2
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A case of inappropriate apolipoprotein e testing in Alzheimer's disease due to lack of an informed consent discussion.一例因缺乏知情同意讨论而在阿尔茨海默病中进行不适当载脂蛋白E检测的病例。
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本文引用的文献

1
Erratum to: Using ApoE Genotyping to Promote Healthy Lifestyles in Finland - Psychological Impacts: Randomized Controlled Trial.《芬兰利用载脂蛋白E基因分型促进健康生活方式——心理影响:随机对照试验》勘误
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2
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Am J Clin Nutr. 2016 Sep;104(3):827-36. doi: 10.3945/ajcn.116.135012. Epub 2016 Aug 10.
3
Design and baseline characteristics of the Food4Me study: a web-based randomised controlled trial of personalised nutrition in seven European countries.Food4Me研究的设计与基线特征:一项在七个欧洲国家开展的基于网络的个性化营养随机对照试验。
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4
Do we know enough? A scientific and ethical analysis of the basis for genetic-based personalized nutrition.我们了解得足够吗?基于遗传学的个性化营养的科学和伦理基础分析。
Genes Nutr. 2013 Jul;8(4):373-81. doi: 10.1007/s12263-013-0338-6. Epub 2013 Mar 8.
5
Informed consent in direct-to-consumer personal genome testing: the outline of a model between specific and generic consent.直接面向消费者的个人基因组检测中的知情同意:特定同意与一般同意之间的模式概述。
Bioethics. 2014 Sep;28(7):343-51. doi: 10.1111/bioe.12004. Epub 2012 Nov 8.
6
Genetic counseling and testing for Alzheimer disease: joint practice guidelines of the American College of Medical Genetics and the National Society of Genetic Counselors.阿尔茨海默病的遗传咨询和检测:美国医学遗传学学院和全国遗传咨询师协会的联合实践指南。
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7
"I know what you told me, but this is what I think:" perceived risk of Alzheimer disease among individuals who accurately recall their genetics-based risk estimate.“我知道你告诉过我,但这是我的想法:”那些能准确回忆起基于遗传风险评估的人对阿尔茨海默病风险的感知。
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Disclosure of APOE genotype for risk of Alzheimer's disease.载脂蛋白E基因分型与阿尔茨海默病风险的披露
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9
What makes clinical research ethical?临床研究的伦理准则是什么?
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