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基因检测与初级保健:新环境下的新伦理准则。

Genetic testing and primary care: a new ethic for a new setting.

作者信息

Resnik David B

机构信息

Department of Medical Humanities, The Brody School of Medicine, East Carolina University, Greenville, NC 27858, USA.

出版信息

New Genet Soc. 2003 Dec;22(3):245-56. doi: 10.1080/1463677032000147207.

Abstract

For several decades, clinical geneticists have espoused two key ethical principles, nondirectiveness and confidentiality. These principles made a great deal of sense in the highly personal and controversial setting of reproductive genetics. Now that clinical genetics has entered the primary care setting, clinicians are rethinking the strength of their commitment to these traditional norms and they are revamping their ethical priorities. Patients increasingly need advice about whether they should take genetic tests and whether and how they should respond to the test results. Patients also need to know about how this information will impact family members and whether other members of their family should be tested. Clinical geneticists may even consider breaking individual confidentiality in order to prevent harms to family members. Although clinical geneticists do not need to abandon nondirectiveness and confidentiality in this new setting, they may not strictly adhere to these principles in some circumstances in order to benefit patients and their families.

摘要

几十年来,临床遗传学家一直秉持两项关键的伦理原则:非指导性和保密性。在生殖遗传学这个高度个人化且颇具争议的领域,这些原则极具意义。如今,临床遗传学已进入初级保健领域,临床医生正在重新思考他们对这些传统规范的坚守程度,并在调整他们的伦理优先事项。患者越来越需要关于是否应该进行基因检测以及是否以及如何应对检测结果的建议。患者还需要了解这些信息将如何影响家庭成员,以及他们的其他家庭成员是否应该接受检测。临床遗传学家甚至可能会考虑打破个人保密原则,以防止对家庭成员造成伤害。尽管临床遗传学家在这种新环境中无需摒弃非指导性和保密性原则,但在某些情况下,为了患者及其家人的利益,他们可能不会严格遵守这些原则。

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