Cordier Cristophe, Lambert Debby, Voelckel Marie-Antoinette, Hosterey-Ugander Ulrika, Skirton Heather
Department of Oncology and Haematology, University Hospital of Strasbourg, Strasbourg, France.
J Community Genet. 2012 Jan;3(1):19-24. doi: 10.1007/s12687-011-0073-x. Epub 2011 Dec 14.
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.
优质的基因医疗服务应遍布欧洲。然而，由于诊断和基因检测选项的增加，基因咨询服务面临的压力增大。许多国家已经表明，经过适当培训的基因咨询师和基因护士能够为寻求各种基因疾病信息或检测的患者提供临床护理。欧洲人类遗传学学会正在建立一个基因咨询师认证体系，以确保安全执业，然而，关于欧洲非医学基因咨询师的执业和教育情况，几乎没有相关信息。为收集基线数据，我们联系了关键信息提供者（国家遗传学组织的负责人或经验丰富的从业者），请他们完成一项在线调查，报告各自国家的情况。29名从业者做出了回应，提供了来自18个国家的数据。研究结果表明，欧洲各地基因咨询师的数量、角色和教育存在巨大差异。例如，在英国和荷兰，每百万人口中有超过4名咨询师，而在德国、匈牙利、土耳其和捷克共和国，没有非医学咨询师。七个国家有针对基因咨询师的特定教育项目，但只有法国有针对基因咨询师的特定管理法律框架。在后基因组时代，由于基因检测的可及性和使用增加，卫生系统面临更大压力，这些差异可能导致为欧洲公民提供的服务不平等。这项研究强调了欧洲需要采取一致的基因咨询师认证方法。
