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

机译:遗传咨询和直接针对消费者遗传测试的道德问题

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摘要

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 ethical lens. 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 geneticbased healthcare system.
机译:在过去的几年中,直接面向消费者(DTC)的基因测试在公共,医疗保健和学术领域越来越受到关注。 DTC基因测试公司面临相当多的批评和怀疑,尤其是在医学和基因咨询界。这就提出了一个问题,即DTC基因检测的哪些具体方面引起了遗传咨询师的关注,反之,则是希望。本文通过从伦理角度探讨DTC基因测试来解决这个问题。通过考虑影响遗传咨询的基本伦理方法(护理伦理和基于原则的伦理),我们强调了DTC基因检测公司提出的特定伦理问题。最终,在考虑基因咨询背景下的DTC测试伦理时,我们应该将其视为一种平衡行为。我们需要仔细而详细地考虑此类测试的风险和令人不安的方面,以及DTC基因测试可用性的增加可能带来的直接和间接的潜在好处。因此,至关重要的是,遗传咨询师必须了解情况并参与正在进行的有关DTC基因检测和DTC公司的辩论。这样做将确保不仅在传统的咨询会议中而且在更广泛的层面上促进遗传咨询专业的基本伦理理论和原则。最终,这将有助于确保公众享受日益普及的基于基因的医疗保健系统的好处。

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