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界定公众参与的范围:审视公共卫生基因组学中的“不知情权”

Defining the Scope of Public Engagement: Examining the "Right Not to Know" in Public Health Genomics.

作者信息

Allen Clarissa, Sénécal Karine, Avard Denise

机构信息

Research Assistant at the Center of Genomics and Policy, located within the McGill University/Genome Quebec Innovation Center in Montreal, Quebec.

Academic Associate at the Centre of Genomics and Policy in the Faculty of Medicine at McGill University in Montreal, Québec.

出版信息

J Law Med Ethics. 2014 Spring;42(1):11-8. doi: 10.1111/jlme.12114.

DOI:10.1111/jlme.12114
PMID:26767472
Abstract

In this article, we explore the concept of a "right not to know" on a population rather than individual level. We argue that a population level "right not to know" is a useful concept for helping to define the appropriate boundaries of public engagement initiatives in the emerging public health genomics context.

摘要

在本文中,我们探讨的是群体层面而非个体层面的“不知情权”概念。我们认为,群体层面的“不知情权”是一个有用的概念,有助于在新兴的公共卫生基因组学背景下界定公众参与倡议的适当界限。

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Defining the Scope of Public Engagement: Examining the "Right Not to Know" in Public Health Genomics.界定公众参与的范围:审视公共卫生基因组学中的“不知情权”
J Law Med Ethics. 2014 Spring;42(1):11-8. doi: 10.1111/jlme.12114.
2
Is There a Right Time to Know? The Right Not to Know and Genetic Testing in Children.存在知晓的恰当时间吗?儿童的不知情权与基因检测
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INTRODUCTION: From the Right to Know to the Right Not to Know.引言:从知情权到不知情权
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引用本文的文献

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The Ethics of General Population Preventive Genomic Sequencing: Rights and Social Justice.普通人群预防性基因组测序的伦理:权利与社会正义
J Med Philos. 2018 Jan 12;43(1):22-43. doi: 10.1093/jmp/jhx034.
2
Genomics England's implementation of its public engagement strategy: Blurred boundaries between engagement for the United Kingdom's 100,000 Genomes project and the need for public support.英国基因组学公司实施公众参与策略:英国“十万基因组计划”的公众参与和公众支持之间的界限日益模糊。
Public Underst Sci. 2018 Apr;27(3):352-364. doi: 10.1177/0963662517747200. Epub 2017 Dec 14.