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个人遗传学:从服务提供商角度看欧洲的监管框架。

Personal genetics: regulatory framework in Europe from a service provider's perspective.

机构信息

Biomedical Engineering Laboratory, Institute of Communication and Computer Systems, National Technical University of Athens, Athens, Greece.

出版信息

Eur J Hum Genet. 2011 Apr;19(4):382-8. doi: 10.1038/ejhg.2010.189. Epub 2010 Dec 1.

Abstract

The purpose of this article is to give an overview and discuss the relevant regulations in place, or under consideration, regarding healthcare-related personal genetics services in Europe - this is a rapidly evolving field and in most European Union (EU) countries the regulatory framework is not yet clear. The review will be framed from the perspective of potential service providers (companies, health services and practitioners, including medical, nutritional, complementary, etc), the growing number of which will need to be aware of potential regulatory hurdles existing now and that may arise in the future. The main conclusion from the survey is that strict regulations regarding practitioner-delivered personal genetic-testing services are unlikely to be enforced over the next 5 years in most EU countries, with the exception of Germany. There is broad-based, but by no means universal, support for a strong voluntary code of practice as an alternative to government regulations to protect consumers and to enable all stakeholders to recognise serious and reputable service providers. On the other hand, there are influential bodies calling for strict regulation. As genotyping costs rapidly fall, it is likely that it will become routine and a major challenge that does not seem to be addressed by current debate on regulations is the emergence of companies offering/selling personal genetic services based on a customer's pre-existing genetic results and therefore no actual laboratory testing involved.

摘要

本文旨在概述和讨论欧洲与医疗相关的个人遗传学服务的现有或正在考虑的相关法规——这是一个快速发展的领域,在大多数欧盟(EU)国家,监管框架尚不清楚。本综述将从潜在服务提供商(公司、医疗服务和从业者,包括医疗、营养、补充等)的角度出发,随着这一群体数量的不断增加,他们需要了解当前和未来可能存在的潜在监管障碍。调查的主要结论是,在未来 5 年内,除德国以外,大多数欧盟国家不太可能对从业者提供的个人基因检测服务实施严格的法规,尽管有广泛的支持,但并非普遍支持以强有力的行业自律守则替代政府监管,以保护消费者并使所有利益攸关方能够认可认真和信誉良好的服务提供商。另一方面,也有一些有影响力的机构呼吁进行严格的监管。随着基因分型成本的迅速下降,基因检测可能变得很常见,而目前关于监管的讨论似乎没有解决的一个主要挑战是,一些公司基于客户预先存在的基因检测结果提供/销售个人基因服务,而无需进行实际的实验室检测。

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