Skirton Heather, Cordier Christophe, Lambert Debby, Hosterey Ugander Ulrika, Voelckel Marie-Antoinette, O'Connor Anita
Faculty of Health, Education and Society, Plymouth University, Wellington Road, Taunton, TA1 5YD, UK,
J Community Genet. 2013 Jan;4(1):69-75. doi: 10.1007/s12687-012-0119-8. Epub 2012 Sep 28.
Advances in genetics have meant that the genetic services are now accessed by increasing numbers of patients. One way of dealing with the pressure on services without jeopardising patient care is the inclusion of nonmedical genetic counsellors and genetic nurses in the genetic services team. However, a cohesive approach to the profession has been lacking in Europe, and an educational programme and registration system for European practitioners is required. The aim of this study was to ascertain the type of work undertaken by genetic nurses and counsellors in Europe and the context in which they practised. We used a cross-sectional survey design to collect data from 213 practitioners, either genetic nurses or genetic counsellors, from 18 European countries. Respondents completed the survey online, and data were analysed using descriptive statistics and cross-tabulations. The majority were involved in undertaking the initial contact with the patient (89.9 %) and explaining the genetic test to the patient (91.5 %), while 74 % ordered tests and 91.4 % obtained informed consent for such tests. Psychological support before and after genetic testing was provided by 80.2 % of respondents, and 82.1 % reported regularly managing cases autonomously. While the genetic counselling profession is barely established in some countries, counsellors are able to contribute substantially to patient care as part of the multi-disciplinary team. Further efforts to establish the profession at the European level through a registration process will enhance the confidence in this new group of allied health professionals.
遗传学的进展意味着越来越多的患者开始接受基因服务。在不危及患者护理的前提下，应对服务压力的一种方法是在基因服务团队中纳入非医学基因咨询师和基因护士。然而，欧洲一直缺乏对该职业的统一方法，因此需要为欧洲从业者制定教育计划和注册系统。本研究的目的是确定欧洲基因护士和咨询师所从事的工作类型以及他们的执业环境。我们采用横断面调查设计，从18个欧洲国家的213名从业者（基因护士或基因咨询师）中收集数据。受访者在线完成调查，数据采用描述性统计和交叉列表进行分析。大多数人参与了与患者的初步接触（89.9%）并向患者解释基因检测（91.5%），而74%的人订购检测，91.4%的人获得了此类检测的知情同意。80.2%的受访者在基因检测前后提供心理支持，82.1%的人报告经常自主管理病例。虽然基因咨询职业在一些国家刚刚起步，但作为多学科团队的一部分，咨询师能够为患者护理做出重大贡献。通过注册程序在欧洲层面进一步努力建立该职业，将增强对这一新的 allied health professionals 群体的信心。 （注：“allied health professionals”直译为“联合健康专业人员”，在医学领域可能有更专业的特定译法，此处保留英文以便准确传达原文含义）
