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克洛伊法案:一项挑战基因检测核心伦理规范的强大立法运动。

Chloe's Law: A Powerful Legislative Movement Challenging a Core Ethical Norm of Genetic Testing.

作者信息

Caplan Arthur L

机构信息

Director, Division of Medical Ethics, NYU Langone Medical Center, New York, New York, United States of America.

出版信息

PLoS Biol. 2015 Aug 6;13(8):e1002219. doi: 10.1371/journal.pbio.1002219. eCollection 2015 Aug.

Abstract

Since the early 1970s, the ethical norm governing counselors involved in testing and screening for genetic conditions related to reproduction has been strict neutrality. Counseling about reproductive genetics was to be patient centered but nondirective. Many advocates for people with Down syndrome believe that high abortion rates following a diagnosis of this condition show an unfounded bias against those with Down syndrome. These advocates have succeeded in enacting federal and state legislation that requires women who receive a prenatal diagnosis of Down syndrome to receive positive information about the condition, thereby ending the nominal goal of value-neutral counseling and setting the stage for further normative shifts in clinical reproductive genetics as counseling expands because of cell-free testing.

摘要

自20世纪70年代初以来,指导参与与生殖相关的基因疾病检测和筛查的咨询师的道德规范一直是严格的中立。关于生殖遗传学的咨询应以患者为中心,但不具有指导性。许多唐氏综合征患者的倡导者认为,诊断出这种疾病后高堕胎率表明对唐氏综合征患者存在无端偏见。这些倡导者成功推动了联邦和州立法,要求接受唐氏综合征产前诊断的女性获得有关该疾病的积极信息,从而结束了价值中立咨询这一表面目标,并随着因无细胞检测而使咨询范围扩大,为临床生殖遗传学的进一步规范转变奠定了基础。

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引用本文的文献

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Re-examining the Ethics of Genetic Counselling in the Genomic Era.
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Regulating Preimplantation Genetic Testing across the World: A Comparison of International Policy and Ethical Perspectives.
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本文引用的文献

1
Cell-free DNA analysis for noninvasive examination of trisomy.
N Engl J Med. 2015 Apr 23;372(17):1589-97. doi: 10.1056/NEJMoa1407349. Epub 2015 Apr 1.
2
With new prenatal testing, will babies with Down syndrome slowly disappear?
Arch Dis Child. 2009 Nov;94(11):823-6. doi: 10.1136/adc.2009.166017. Epub 2009 Jun 15.

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