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[通过遗传咨询进行风险沟通:要求与问题]

[Risk communication through genetic counselling: requirements and problems].

作者信息

Henn Wolfram, Schindelhauer-Deutscher H J

机构信息

Institut für Humangenetik, Universität des Saarlandes, Homburg/Saar, BRD.

出版信息

Bundesgesundheitsblatt Gesundheitsforschung Gesundheitsschutz. 2007 Feb;50(2):174-80. doi: 10.1007/s00103-007-0138-5.

Abstract

Genetic counselling is the single most important instrument for the individual communication of genetic risks. Beyond medical and psychosocial purposes in terms of preparing diagnostic measures and coping with results, genetic counselling also serves as a means to ensure the clients' decision autonomy through adequately informed consent. Accordingly, indispensable preconditions of the counselling process are voluntariness, individuality, non-directiveness, and respect of the right not to know. However, the requirement that any genetic diagnosis should be embedded into genet ic counselling is all too often neglected in today's reality of medicine. Consequently, there is urgent need of legislation ensuring mandatory counselling at least before prenatal and predictive genetic testing. Additionally, clear standards must be established and enforced for the quality of the counselling process as well as for the qualification of counsellors, and sufficient personal and institutional resources must be provided.

摘要

遗传咨询是就遗传风险进行个体沟通的最重要工具。除了在准备诊断措施和应对结果方面的医学及心理社会目的外,遗传咨询还作为一种手段,通过充分知情同意来确保客户的决策自主性。因此,咨询过程必不可少的前提条件是自愿性、个体性、非指导性以及尊重不知情权。然而,在当今医学现实中,任何基因诊断都应纳入遗传咨询这一要求常常被忽视。因此,迫切需要立法确保至少在产前和预测性基因检测之前进行强制咨询。此外,必须为咨询过程的质量以及咨询师的资质制定并执行明确标准,并且必须提供充足的个人和机构资源。

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