Kalokairinou L, Howard H C, Slokenberga S, Fisher E, Flatscher-Thöni M, Hartlev M, van Hellemondt R, Juškevičius J, Kapelenska-Pregowska J, Kováč P, Lovrečić L, Nys H, de Paor A, Phillips A, Prudil L, Rial-Sebbag E, Romeo Casabona C M, Sándor J, Schuster A, Soini S, Søvig K H, Stoffel D, Titma T, Trokanas T, Borry P
Department of Public Health and Primary Care, Centre for Biomedical Law and Ethics, University of Leuven, Kapucijnenvoer 35, Box 7001, 3000, Leuven, Belgium.
Centre for Research Ethics and Bioethics, Uppsala University, Uppsala, Sweden.
J Community Genet. 2018 Apr;9(2):117-132. doi: 10.1007/s12687-017-0344-2. Epub 2017 Nov 18.
Despite the increasing availability of direct-to-consumer (DTC) genetic testing, it is currently unclear how such services are regulated in Europe, due to the lack of EU or national legislation specifically addressing this issue. In this article, we provide an overview of laws that could potentially impact the regulation of DTC genetic testing in 26 European countries, namely Austria, Belgium, Cyprus, the Czech Republic, Denmark, Estonia, Finland, France, Germany, Greece, Hungary, Ireland, Italy, Latvia, Lithuania, Luxembourg, Norway, Poland, Portugal, Romania, Slovakia, Slovenia, Spain, Sweden, the Netherlands and the United Kingdom. Emphasis is placed on provisions relating to medical supervision, genetic counselling and informed consent. Our results indicate that currently there is a wide spectrum of laws regarding genetic testing in Europe. There are countries (e.g. France and Germany) which essentially ban DTC genetic testing, while in others (e.g. Luxembourg and Poland) DTC genetic testing may only be restricted by general laws, usually regarding health care services and patients' rights.
尽管直接面向消费者(DTC)的基因检测服务越来越普及,但由于缺乏欧盟或国家层面专门针对此问题的立法,目前尚不清楚此类服务在欧洲是如何受到监管的。在本文中,我们概述了可能影响26个欧洲国家DTC基因检测监管的法律,这26个国家分别是奥地利、比利时、塞浦路斯、捷克共和国、丹麦、爱沙尼亚、芬兰、法国、德国、希腊、匈牙利、爱尔兰、意大利、拉脱维亚、立陶宛、卢森堡、挪威、波兰、葡萄牙、罗马尼亚、斯洛伐克、斯洛文尼亚、西班牙、瑞典、荷兰和英国。重点放在与医学监督、遗传咨询和知情同意相关的条款上。我们的结果表明,目前欧洲关于基因检测的法律范围广泛。有些国家(如法国和德国)基本上禁止DTC基因检测,而在其他一些国家(如卢森堡和波兰),DTC基因检测可能仅受到一般法律的限制,这些法律通常涉及医疗保健服务和患者权利。