Godard Béatrice, Raeburn Sandy, Pembrey Marcus, Bobrow Martin, Farndon Peter, Aymé Ségolène
INSERM SC11, Paris, France.
Eur J Hum Genet. 2003 Dec;11 Suppl 2:S123-42. doi: 10.1038/sj.ejhg.5201117.
The present paper examines the professional and scientific views on the social, ethical and legal issues that impact on genetic information and testing in insurance and employment in Europe. For this purpose, many aspects have been considered, such as the concerns of medical geneticists, of the insurers and employers, of the public, as well as the regulatory frameworks and unresolved issues. The method used was primarily the review of the technical, social, economical and ethical aspects of advances in genetics and the concerns of parties who are involved, that is, the insurers, the employers and the public. The existing guidelines and legislation on this topic were also reported. Then, the method was to examine the issues debated by these parties in Europe, as well as by 47 experts from 14 European countries invited to an international workshop organized by the European Society of Human Genetics Public and Professional Policy Committee in Manchester, UK, 25-27 February 2000. The result of this was that the most important issues raised by genetic information and testing in insurance and employment in Europe include a need for clear definitions of terms used in genetics, declaring the grounds on which genetic information is or is not used, and promoting confidence between the public and the insurance industry. There is currently very little use of genetic information in relation to employment, but the situation should be kept under review.
本文探讨了欧洲关于保险和就业领域中影响基因信息及检测的社会、伦理和法律问题的专业及科学观点。为此，考虑了诸多方面，比如医学遗传学家、保险公司和雇主、公众的关切，以及监管框架和未解决的问题。所采用的方法主要是审视遗传学进展在技术、社会、经济和伦理方面的情况以及相关各方（即保险公司、雇主和公众）的关切。还报告了关于这一主题的现有指南和立法。接着，该方法是研究这些各方在欧洲所辩论的问题，以及2000年2月25日至27日在英国曼彻斯特由欧洲人类遗传学学会公共与专业政策委员会组织的一次国际研讨会上受邀的来自14个欧洲国家的47位专家所辩论的问题。结果是，欧洲保险和就业领域中基因信息及检测所引发的最重要问题包括需要明确遗传学中所用术语的定义、声明使用或不使用基因信息的依据，以及增进公众与保险业之间的信任。目前基因信息在就业方面的使用非常少，但这种情况应持续受到关注。
