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遗传咨询以及直接面向消费者的基因检测所涉及的伦理问题。

Genetic counseling and the ethical issues around direct to consumer genetic testing.

作者信息

Hawkins Alice K, Ho Anita

机构信息

Centre for Applied Ethics, University of British Columbia, 227-6356 Agricultural Road, Vancouver, BC V6T1Z2, Canada.

出版信息

J Genet Couns. 2012 Jun;21(3):367-73. doi: 10.1007/s10897-012-9488-8.

Abstract

Over the last several years, direct to consumer(DTC) genetic testing has received increasing attention in the public, healthcare and academic realms. DTC genetic testing companies face considerable criticism and scepticism,particularly from the medical and genetic counseling community. This raises the question of what specific aspects of DTC genetic testing provoke concerns, and conversely,promises, for genetic counselors. This paper addresses this question by exploring DTC genetic testing through an ethic allens. By considering the fundamental ethical approaches influencing genetic counseling (the ethic of care and principle-based ethics) we highlight the specific ethical concerns raised by DTC genetic testing companies. Ultimately,when considering the ethics of DTC testing in a genetic counseling context, we should think of it as a balancing act. We need careful and detailed consideration of the risks and troubling aspects of such testing, as well as the potentially beneficial direct and indirect impacts of the increased availability of DTC genetic testing. As a result it is essential that genetic counselors stay informed and involved in the ongoing debate about DTC genetic testing and DTC companies. Doing so will ensure that the ethical theories and principles fundamental to the profession of genetic counseling are promoted not just in traditional counseling sessions,but also on a broader level. Ultimately this will help ensure that the public enjoys the benefits of an increasingly genetic based healthcare system.

摘要

在过去几年中,直接面向消费者(DTC)的基因检测在公众、医疗保健和学术领域受到了越来越多的关注。DTC基因检测公司面临着相当多的批评和质疑,尤其是来自医学和遗传咨询界。这就引发了一个问题,即DTC基因检测的哪些具体方面引发了关注,反之,又为遗传咨询师带来了哪些希望。本文通过伦理视角探讨DTC基因检测来解决这个问题。通过考虑影响遗传咨询的基本伦理方法(关怀伦理和基于原则的伦理),我们突出了DTC基因检测公司引发的具体伦理问题。最终,在遗传咨询背景下考虑DTC检测的伦理时,我们应将其视为一种平衡行为。我们需要仔细且详细地考虑此类检测的风险和令人担忧的方面,以及DTC基因检测可及性增加所带来的潜在有益的直接和间接影响。因此,遗传咨询师必须了解并参与到关于DTC基因检测和DTC公司的持续辩论中。这样做将确保遗传咨询专业的基本伦理理论和原则不仅在传统咨询会议中得到推广,而且在更广泛的层面上得到推广。最终,这将有助于确保公众能够从日益基于基因的医疗保健系统中受益。

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