Storm Brews Over Gene Bank of Estonian Population

Frank, Lone

doi:10.1126/science.286.5443.1262

Cited by 19 publications

(8 citation statements)

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“…Groups such as Genewatch UK and Liberty argue that genetic information is itself a personal identifier, and therefore can never be kept truly confidential [19, 37]. In contrast, critics of the Estonian Genome Project claim that the public health infrastructure is already underfunded and disapprove of money being allocated to a large, expensive venture that may provide little benefit to the population [55]. …”

Section: Discussionmentioning

confidence: 99%

Genebanks: A Comparison of Eight Proposed International Genetic Databases

Austin

Harding²,

McElroy³

2003

Public Health Genomics

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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.

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Section: Discussionmentioning

confidence: 99%

Genebanks: A Comparison of Eight Proposed International Genetic Databases

Austin

Harding²,

McElroy³

2003

Public Health Genomics

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“…Furthermore, the advantage of genetic homogeneity so much trumpeted by deCODE as characterizing the Icelandic population and making it a unique corporate asset, has increasingly been questioned (Abbott, 2000;Á rnason, Sigurg ṍ slason & Benedikz, 2000;yet Gulcher, Helgason & Stefánsson, 2000). The waning genetic fortunes of Iceland have become increasingly noticeable internationally as plans to construct a comprehensive genetic database in Estonia (population 1.4 million) using informed consent have gained momentum (Albrecht & Krumm, 2000;Frank, 1999Frank, , 2000b. After the passing of a bill by the Estonian parliament in December 2000-the so-called Human Gene Research Act-authorizing the construction of such a database, an editor of the German newspaper Frankfurter Allgemeine Zeitung spoke of the coming revolution, with Iceland and Estonia leading the way to new biopolitics.…”

Section: Comparisonsmentioning

confidence: 99%

Yin-yang genetics, or the HSD deCODE controversy

Sigurdsson¹

2001

New Genet. Soc.

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Iceland has attracted world-wide attention because of a controversy surrounding the Icelandic Health Sector Database Act of 1998 and the genomics company deCODE Genetics. The controversy concerns limits to state power, bioethics and regulation of research, and civil liberties. Understanding it necessitates paying attention to the yin-yang-like character of deCODE; it is international or Icelandic, what is the relation between the HSD and deCODE, will the HSD engulf the Icelandic nation as a whole?

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“…The Estonian Gene Bank (www.geenivaramu.ee) is just one example of the DNA collections with invaluable potential for modern genomics (Frank, 1999). Now is the right time to start to realize these options and to generate new level of knowledge.…”

Section: Introductionmentioning

confidence: 99%