Genebanks: a comparison of eight proposed international genetic
databases.
Austin MA, Harding S, McElroy C.
Institute for Public Health Genetics, University of Washington, 1959
N.E. Pacific Avenue, Box 357236, Seattle, WA 98195-7236, USA.
maustin{at}u.washington.edu

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 publicized projects. None of the proposed
databases are currently operational and at least one project was
terminated due to opposition. 

CONCLUSIONS: 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. Copyright 2003 S. Karger AG, Basel
PMID: 12748437 [PubMed - indexed for MEDLINE]
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