Cornel Martina C, van El Carla G, Borry Pascal
Section Community Genetics, Department of Clinical Genetics and EMGO Institute for Health and Care Research, VU University Medical Center, Amsterdam, The Netherlands,
J Community Genet. 2014 Jan;5(1):7-12. doi: 10.1007/s12687-012-0121-1. Epub 2012 Oct 9.
Genetics and genomics have developed fast in the last decade, but have not revolutionized medicine, as some had expected. While translation of research findings to public health applications is lagging behind, direct-to-consumer (DTC) offers of genetic testing have become available, both for monogenic and severe genetic disorders and for genetic variants possibly associated with common complex diseases (susceptibility variants). The European Society of Human Genetics is concerned about the way in which commercial companies are currently introducing genetic tests into the market outside of the scope of the traditional health-care system. There is a sort of a paradox between the lagging implementation in health care of the few genetic tests with proven clinical utility, on the one hand, and the speedy DTC offer of tests, with or without clinical utility. To translate research findings into appropriate clinical applications, assessment of the clinical validity and utility is needed. Many of the parameters needed in assessment frameworks are not available yet. Clinically relevant associations between genetic variants and disease risks have been established, e.g., in oncogenetics and cardiogenetics, and can be used to reflect on the possibilities and obstacles in using the new genetics in public health. In the absence of sufficient information on clinical validity and clinical utility, introduction of genetic tests in common complex disorders is often premature. Priority should be given to settings where clinical utility is proven or likely, to gain additional information concerning diagnosis, prognosis, and disease management. Monitoring and evaluation are essential.
在过去十年中,遗传学和基因组学发展迅速,但并未像一些人预期的那样给医学带来变革。尽管研究成果向公共卫生应用的转化滞后,但直接面向消费者(DTC)的基因检测服务已可提供,涵盖单基因和严重遗传性疾病以及可能与常见复杂疾病相关的基因变异(易感性变异)。欧洲人类遗传学学会对商业公司目前在传统医疗保健系统范围之外将基因检测引入市场的方式表示关切。一方面,少数经证实具有临床效用的基因检测在医疗保健中的应用滞后,另一方面,无论有无临床效用,检测的DTC服务却迅速推出,这存在一种矛盾。为了将研究成果转化为适当的临床应用,需要评估临床有效性和实用性。评估框架所需的许多参数目前尚不具备。基因变异与疾病风险之间的临床相关关联已经确立,例如在肿瘤遗传学和心脏遗传学领域,可用于思考在公共卫生中使用新遗传学的可能性和障碍。在缺乏关于临床有效性和临床实用性的充分信息的情况下,在常见复杂疾病中引入基因检测往往为时过早。应优先考虑已证明或可能具有临床效用的情况,以获取有关诊断、预后和疾病管理的更多信息。监测和评估至关重要。