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A profile of the genetic counsellor and genetic nurse profession in European countries

机译:欧洲国家的遗传咨询师和遗传护士专业简介

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摘要

Quality genetic healthcare services should be available throughout Europe. However, due to enhanced diagnostic and genetic testing options, the pressure on genetic counselling services has increased. It has been shown in many countries that appropriately trained genetic counsellors and genetic nurses can offer clinical care for patients seeking information or testing for a wide range of genetic conditions. The European Society of Human Genetics is setting up a system of accreditation for genetic counsellors, to ensure safe practice, however there has been little information about the practice and education of non-medical genetic counsellors in Europe. To collect baseline data, we approached key informants (leaders in national genetics organisations or experienced practitioners) to complete an online survey, reporting on the situation in their own country. Twenty-nine practitioners responded, providing data from 18 countries. The findings indicate huge variation in genetic counsellor numbers, roles, and education across Europe. For example, in UK and The Netherlands, there are more than four counsellors per million population, while in Germany, Hungary, Turkey, and Czech Republic, there are no non-medical counsellors. There are specific educational programmes for genetic counsellors in seven countries, but only France has a specific governing legal framework for genetic counsellors. In the post-genomic era, with added pressure on health systems due to increases in availability and use of genetic testing, these disparities are likely to result in inequalities in service provided to European citizens. This study underpins the need for a coherent European approach to accreditation of genetic counsellors.
机译:优质的基因保健服务应在整个欧洲提供。但是,由于增加了诊断和基因检测选择,对遗传咨询服务的压力增加了。在许多国家已经证明,经过适当培训的遗传咨询师和遗传护士可以为寻求信息或进行广泛遗传状况检测的患者提供临床护理。欧洲人类遗传学会正在建立遗传咨询师的认证系统,以确保安全的做法,但是,关于欧洲非医学遗传咨询师的实践和教育的信息很少。为了收集基准数据,我们与关键信息提供者(国家遗传学组织的负责人或有经验的从业人员)进行了互动,以完成在线调查,并报告其本国的情况。 29名从业者回答了这一问题,提供了来自18个国家的数据。研究结果表明,整个欧洲的遗传咨询师人数,角色和教育情况差异很大。例如,在英国和荷兰,每百万人口中有超过四名顾问,而在德国,匈牙利,土耳其和捷克共和国,则没有非医学顾问。在七个国家/地区,有针对遗传咨询师的特定教育计划,但只有法国对遗传咨询师具有特定的管理法律框架。在后基因组时代,由于可用性的提高和基因检测的使用增加了对卫生系统的压力,这些差距很可能导致向欧洲公民提供的服务不平等。这项研究强调了对欧洲遗传咨询师认可的一致方法的需求。

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