Section of Hygiene, Institute of Public Health, Università Cattolica del Sacro Cuore, Rome, Italy.
Department of Science for Health Promotion and Mother to Child Care "G. D'Alessandro", University of Palermo, Italy.
Eur J Public Health. 2017 Oct 1;27(5):931-937. doi: 10.1093/eurpub/ckw155.
A need for a governance of genomics in healthcare among European Union (EU) countries arose during an international meeting of experts on public health genomics (PHG). We have conducted a survey on existing national genomic policies in healthcare among Chief Medical Officers (CMOs) of the 28 EU member states, plus Norway.
A questionnaire was sent to CMOs after a meeting on the policy implications of PHG held during the Italian presidency of the Council of EU in 2014. The survey was closed in November 2015.
CMOs response rate was 65.5% (19/29). Twelve (63.2%) reported that their countries had a policy for genomics in healthcare in place, and 15 (78.9%) reported that public funding existed. Public research facilities for the development of such policies were documented in 13 (68.4%) countries, and 15 (83.3%) had working groups devoted to policy development. National agencies carrying out Health Technology Assessment of genomic-based technologies were present in nine countries (50%). Sixteen (88.9%) countries reported having agencies dealing with ethical issues related to genomic technologies. About 55% of countries disclosed the lack of information campaigns aimed at citizens, and 44.4% reported they had a legal framework for direct-to-consumer genetic tests.
Belgium, France, Italy, Spain and UK documented the presence of a policy on genomics in healthcare. While many caveats are necessary because of the methodology, results suggest a need for a co-ordinated effort to foster development and harmonization of dedicated policies across EU to responsibly integrate genomics policies into existing health systems.
在一次公共卫生基因组学（PHG）国际专家会议上，欧盟（EU）国家对医疗保健中的基因组学治理产生了需求。我们对欧盟 28 个成员国和挪威的首席医疗官（CMO）进行了一项关于医疗保健中现有国家基因组政策的调查。
在 2014 年意大利担任欧盟理事会主席期间举行的 PHG 政策影响会议之后，向 CMO 发送了一份问卷。调查于 2015 年 11 月结束。
CMO 的回复率为 65.5%（29 人中的 19 人）。有 12 人（63.2%）报告说他们的国家已经制定了医疗保健中的基因组政策，15 人（78.9%）报告说存在公共资金。在 13 个国家（68.4%）中记录了用于制定此类政策的公共研究设施，并且 15 个国家（83.3%）有专门致力于政策制定的工作组。有 9 个国家（50%）设有开展基因组技术健康技术评估的国家机构。16 个国家（88.9%）报告说有处理与基因组技术相关的伦理问题的机构。大约 55%的国家没有透露针对公民的信息宣传活动，44.4%的国家报告说他们有直接面向消费者的遗传测试的法律框架。
比利时、法国、意大利、西班牙和英国记录了医疗保健中基因组学政策的存在。由于方法学的原因，存在许多警告，但结果表明需要协调努力，在欧盟内促进专门政策的发展和协调，以负责任地将基因组学政策纳入现有卫生系统。
