Regulations and practices of genetic counselling in 38 European countries: the perspective of national representatives
Regulations and practices of genetic counselling in 38 European countries: the perspective of national representatives
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DOI：
10.1038/ejhg.2008.93
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发表时间：
2008-10-01
影响因子：
5.2
通讯作者：
Kaariainen, Helena
中科院分区：
文献类型：
--
作者：
Rantanen, Elina;Hietala, Marja;Kaariainen, Helena
这篇文章的目的是审查38个欧洲国家遗传咨询的国家法规和做法，并检查它们与国际指南中定义的遗传咨询理想的交叉程度。利用电子调查，询问了29个国家的国家人类遗传学会的代表以及其他9个国家的遗传咨询领域的适当联系人关于条例和做法的情况。答复表明，同意、保密、产前诊断方面的遗传咨询、可进行遗传咨询的专业人员以及非指导性是专业人员之间最常商定的或在这些国家受到管制的专题。这些也是基于国际指南的理想遗传咨询的关键方面。相反，在多因素疾病敏感性测试方面的咨询、对少数族裔人士的咨询和与被咨询者的重新联系，是仅在少数国家普遍适用的做法所规范或指导的专题。许多答复表达了对遗传咨询进行更多监管的愿望，并表示欧洲欢迎更统一的教育和遗传咨询组织做法。
The aim of this article is to review the national regulations and practices of genetic counselling in 38 European countries, and to examine how well they intersect the ideals of genetic counselling defined in international guidelines. Using an electronic survey, representatives of the National Societies of Human Genetics in 29 countries, and appropriate contact persons for the field of genetic counselling in 9 other countries, were asked about the regulations and practices. The answers showed that consent, confidentiality, genetic counselling in the context of prenatal diagnosis, those professionals who may perform genetic counselling, and non-directiveness were the topics most often either agreed upon among professionals or regulated in those countries. These are also among the key aspects of ideal genetic counselling, based on international guidelines. Counselling in the context of susceptibility testing for multifactorial diseases, counselling people from ethnic minorities and recontacting the counsellees, on the contrary, were topics regulated or guided by generally applied practices in only few countries. Many of the answers expressed a desire for more regulation of genetic counselling, and that more uniform practices of education and organization of genetic counselling would be welcome in Europe.