Genebanks: A Comparison of Eight Proposed International Genetic Databases

• Published in: Public Health Genomics
• Main Authors: Austin, Melissa A., Harding, Sarah, McElroy, Courtney
• Format: Article in Journal/Newspaper
• Language: English
• Published: S. Karger AG 2003
• Subjects: Canada; Tonga; Iceland
• Online Access: http://dx.doi.org/10.1159/000069544; https://www.karger.com/Article/Pdf/69544

Objective: 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. Methods: 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. Results: 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 ...