儿科环境卫生研究中的隐私与伦理——第一部分：基因检测与产前检测
Privacy and ethics in pediatric environmental health research-part I: genetic and prenatal testing.
作者信息
Fisher Celia B
机构信息
Center for Ethics Education, Fordham University, Bronx, New York 10458, USA.
出版信息
Environ Health Perspect. 2006 Oct;114(10):1617-21. doi: 10.1289/ehp.9003.
Abstract
The pressing need for empirically informed public policies aimed at understanding and promoting children's health has challenged environmental scientists to modify traditional research paradigms and reevaluate their roles and obligations toward research participants. Methodologic approaches to children's environmental health research raise ethical challenges for which federal regulations may provide insufficient guidance. In this article I begin with a general discussion of privacy concerns and informed consent within pediatric environmental health research contexts. I then turn to specific ethical challenges associated with research on genetic determinants of environmental risk, prenatal studies and maternal privacy, and data causing inflicted insight or affecting the informational rights of third parties.
摘要
针对理解和促进儿童健康的、基于实证的公共政策的迫切需求，促使环境科学家改变传统研究范式，并重新评估他们对研究参与者的角色和义务。儿童环境卫生研究的方法学途径引发了伦理挑战，而联邦法规可能对此提供的指导不足。在本文中，我首先总体讨论儿科环境卫生研究背景下的隐私问题和知情同意。然后，我将转向与环境风险的遗传决定因素研究、产前研究和母亲隐私以及导致深刻见解或影响第三方信息权利的数据相关的具体伦理挑战。
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