Austin Melissa A, Harding Sarah, McElroy Courtney
Institute for Public Health Genetics, University of Washington, 1959 N.E. Pacific Avenue, Box 357236, Seattle, WA 98195-7236, USA.
Community Genet. 2003;6(1):37-45. doi: 10.1159/000069544.
To identify and compare population-based genetic databases, or "genebanks", that have been proposed in eight international locations between 1998 and 2002. A genebank can be defined as a stored collection of genetic samples in the form of blood or tissue, that can be linked with medical and genealogical or lifestyle information from a specific population, gathered using a process of generalized consent.
Genebanks were identified by searching Medline and internet search engines with key words such as "genetic database" and "biobank" and by reviewing literature on previously identified databases such as the deCode project. Collection of genebank characteristics was by an electronic and literature search, augmented by correspondence with informed individuals. The proposed genebanks are located in Iceland, the United Kingdom, Estonia, Latvia, Sweden, Singapore, the Kingdom of Tonga, and Quebec, Canada. Comparisons of the genebanks were based on the following criteria: genebank location and description of purpose, role of government, commercial involvement, consent and confidentiality procedures, opposition to the genebank, and current progress.
All of the groups proposing the genebanks plan to search for susceptibility genes for complex diseases while attempting to improve public health and medical care in the region and, in some cases, stimulating the local economy through expansion of the biotechnology sector. While all of the identified plans share these purposes, they differ in many aspects, including funding, subject participation, and organization. The balance of government and commercial involvement in the development of each project varies. Genetic samples and health information will be collected from participants and coded in all of the genebanks, but consent procedures range from presumed consent of the entire eligible population to recruitment of volunteers with informed consent. Issues regarding confidentiality and consent have resulted in opposition to some of the more publicized projects. None of the proposed databases are currently operational and at least one project was terminated due to opposition.
Ambitious genebank projects have been proposed in numerous countries and provinces. The characteristics of the projects vary, but all intend to map genes for common diseases and hope to improve the health of the populations involved. The impact of these projects on understanding genetic susceptibility to disease will be increasingly apparent if the projects become operational. The ethical, legal, and social implications of the projects should be carefully considered during their development.
识别并比较1998年至2002年间在八个国际地点提议建立的基于人群的遗传数据库，即“基因库”。基因库可定义为以血液或组织形式存储的遗传样本集合，这些样本可与来自特定人群的医疗、族谱或生活方式信息相联系，这些信息是通过广义同意程序收集的。
通过在Medline和互联网搜索引擎中使用“遗传数据库”和“生物样本库”等关键词进行搜索，并查阅如deCode项目等先前已识别数据库的文献来识别基因库。通过电子搜索和文献检索收集基因库特征，并与相关知情人士通信进行补充。提议建立的基因库位于冰岛、英国、爱沙尼亚、拉脱维亚、瑞典、新加坡、汤加王国和加拿大魁北克。基因库的比较基于以下标准：基因库位置及目的描述、政府作用、商业参与情况、同意和保密程序、对基因库的反对意见以及当前进展。
所有提议建立基因库的团体都计划寻找复杂疾病的易感基因，同时试图改善该地区的公共卫生和医疗保健，在某些情况下，还通过扩大生物技术部门来刺激当地经济。虽然所有已识别的计划都有这些目的，但它们在许多方面存在差异，包括资金、受试者参与情况和组织形式。每个项目开发过程中政府和商业参与的平衡各不相同。所有基因库都将从参与者那里收集遗传样本和健康信息并进行编码，但同意程序从假定全体合格人群同意到招募有知情同意的志愿者不等。关于保密和同意的问题导致了对一些更受关注项目的反对。目前没有一个提议的数据库投入运营，至少有一个项目因反对而终止。
许多国家和省份都提出了雄心勃勃的基因库项目。这些项目的特点各不相同，但都旨在绘制常见疾病的基因图谱，并希望改善相关人群的健康状况。如果这些项目投入运营，它们对理解疾病遗传易感性的影响将越来越明显。在项目开发过程中应仔细考虑其伦理、法律和社会影响。
