Ethical Issues in Contemporary Clinical Genetics.
Ethical Issues in Contemporary Clinical Genetics.
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DOI：
10.1016/j.mayocpiqo.2018.03.005
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发表时间：
2018-06-01
期刊：
影响因子：
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通讯作者：
Bernstein, Jonathan A
中科院分区：
文献类型：
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作者：
Braverman, Genna;Shapiro, Zachary E;Bernstein, Jonathan A
随着基因测序能力变得越来越强大，成本下降，基因组学的范围正在从研究实验室扩大到病房、门诊诊所，并随着直接面向消费者的检测服务的营销，扩大到患者的家中。越来越多的病人接受各种诊断从癌症到心肌病可以合理地期望与他们的提供者就基因检测的适应症进行对话。在这种动态的背景下，掌握临床遗传学的伦理原则和历史将为临床医生提供指导他们的实践和帮助患者导航复杂的医学-心理社会领域的工具。本文概述了临床遗传学的突出伦理问题。这个问题是接近临床实践的重点，但也考虑到研究。该审查是围绕时间和信息序列的问题，通常出现在过程中的预测试，测试和测试后阶段的病人护理。从医学，法律的，和历史的角度来看，这篇评论涵盖了以下主题：（1）知情同意，（2）返回的结果，（3）隐私和保密性，并打算为读者提供一个适当的基础，适用于伦理原则的基因检测范式与这些情况发生的背景景观的理解。
As genetic sequencing capabilities become more powerful and costs decline, the reach of genomics is expanding beyond research laboratories to the wards, outpatient clinics, and, with the marketing of direct-to-consumer testing services, patients' homes. Increasingly, patients receiving various diagnoses-from cancer to cardiomyopathy-can reasonably expect to have conversations with their providers about indications for genetic testing. In this dynamic context, a grasp of the ethical principles and history underlying clinical genetics will provide clinicians with the tools to guide their practice and help patients navigate complex medical-psychosocial terrain. This article provides an overview of the salient ethical concerns pertaining to clinical genetics. The subject is approached with an emphasis on clinical practice, but consideration is also given to research. The review is organized around the temporal and informational sequence of issues commonly arising during the course of pretesting, testing, and posttesting phases of patient care. Drawing from medical, legal, and historical perspectives, this review covers the following topics: (1) informed consent, (2) return of results, and (3) privacy and confidentiality, and intends to equip readers with an appropriate foundation to apply ethical principles to genetic testing paradigms with an understanding of the contextual landscape against which these situations occur.