国际人类基因数据宣言

基因研究,尤其是对于人类染色体组序列的研究,为长久的医疗研究和生物医学应用打开了道路。基因数据可以用于医疗诊断,疾病预防和人口基因研究。正因为每个人的基因继承都是独一无二的,法医学和法律系统也用基因作鉴别。基因数据银行的数目正逐步上升,有一些银行更拥有超过一百万的记录标本。这些数据库有的甚至在全国层面运营,拥有这个国家人口的所有基因样本。

在这个迅速发展的领域里,许多人担心人类基因数据会被用于危害人权和自由的目的。各国政府,非政府组织,学术团体和社会大众呼吁确定国际一级的指导方针。

为了解决这些问题, 20031016日,联合国教科文组织第32次全体会议一致通过了《国际人类基因数据宣言》。此宣言和世界人类基因组和人权宣言是国际上生物伦理学领域研究的唯一参考。


宣言版本 (2003年10月16日)
| | 西 | | | ا阿 

| 土耳其语 | 希伯来语


More on this topic: Aware of the complexity and scale of research in genetics and the urgent need for international guidelines, the Director-General of UNESCO asked the IBC to examine the possibility of drafting an international instrument on human genetic data. The IBC was well-placed to do so: it had already considered human genetic data and had produced two reports: “Confidentiality and Genetic Data” (June 2000) and “Human Genetic Data: Preliminary Study of the IBC on their Collection, Processing, Storage and Use” (finalized in May 2002). The Director-General announced his initiative to the Second Session of the IGBC in May 2001, which welcomed it. At its 31st session in Autumn 2001, the General Conference endorsed the proposal and requested the Director-General to “keep it informed of the action he intends to take on the advice and recommendations of the IBC and IGBC concerning the possibility of drafting an international instrument on genetic data” (31 C/Res. 22, para. 5). The IBC set up in 2002, a Drafting Group chaired by Ms Nicole Questiaux (France) and Mr Patrick Robinson (Jamaica) that was invited to make proposals concerning the elaboration of the instrument. The Drafting Group elaborated a first outline of the text, which the IBC as a whole examined during its Ninth Session, in Montreal (Canada) in November 2002. The revised outline was then the object of international consultation. It was sent to Member States of UNESCO, intergovernmental organizations, non-governmental organizations, specialists, professional research associations and many other organizations. As part of this consultation, a Public Hearings Day (read the final report) was held on 28 February 2003 in Monaco, and associations and institutions representing aboriginal groups, the handicapped, doctors and the private sector expressed their views. After having been again examined by the Drafting Group, the outline was submitted in April 2003 to the Executive Board of UNESCO and then to the IBC at its Tenth Session in 2003. The International Declaration, as finalized by the Meeting of Governmental Experts in June and by the Working Group set up by Commission III at the 32nd General Conference, was adopted unanimously and by acclamation by the General Conference on 16 October 2003.

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