Biotechnology in the Baltic

Frank, Lone

doi:10.1038/89229

Cited by 7 publications

(9 citation statements)

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“…With the exception of articles considering ethical, legal and social issues involved in aspects of the Iceland Health Sector Database and several brief news articles in Nature [20], Nature Biotechnology [21, 22, 23], and Science [24]that summarize projects in Estonia and the United Kingdom, few scientific journal articles were found. Many articles in the popular press also contained useful information on the projects.…”

Section: Resultsmentioning

confidence: 99%

“…The database will include genetic profiles and information on individual health status and lifestyle [17]. The EGP Foundation, a nonprofit organization funded by public investment, will retain ownership of the data and biological samples and license access to the genebank to outside researchers [22]. The Estonian Parliament passed the Human Genes Research Act in December of 2000 to facilitate the establishment and maintenance of the genebank [39].…”

Section: Resultsmentioning

confidence: 99%

“…For example, in the Kingdom of Tonga, participants would have received free health care [16]. In Estonia and Latvia, profits earned by the respective genebank projects will contribute to the national health care budget [17, 22, 41]. In Estonia, Latvia, and the United Kingdom, knowledge gained from the studies will be used to augment medical care and the genebanks will be integrated into the national health care system [17, 22, 41, 53].…”

Section: Discussionmentioning

confidence: 99%

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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: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

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Genebanks: A Comparison of Eight Proposed International Genetic Databases

Austin

Harding²,

McElroy³

2003

Public Health Genomics

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“…Further, the Estonia Genome Project garnered a high degree of public participation (i.e., more than 75%), and participant awareness was reported to be strong. 31 …”

Section: Public Consultationmentioning

confidence: 99%

“…14 A cornerstone of the public consultation process is public education, and Estonia represents a success story. In 1999, a 31 Publicity for these efforts generated enormous public interest in genomics. Tartu University in Estonia experienced a sharp increase in the number of students enrolling in genetic courses and pursuing life science and biotechnology majors.…”

Section: Public Consultationmentioning

confidence: 99%

National population-based biobanks for genetic research

Swede

Stone²,

Norwood

2007

Genetics in Medicine

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“Iceland Inc.”?: On the ethics of commercial population genomics

Merz

McGee

Sankar

2004

Social Science & Medicine

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A detailed analysis of the Icelandic commercial population-wide genomics database project of deCODE Genetics was performed for the purpose of providing ethics insights into public/private efforts to develop genetic databases. This analysis examines the moral differences between the general case of governmental collection of medical data for public health purposes and the centralized collection planned in Iceland. Both the process of developing the database and its design vary in significant ways from typical government data collection and analysis activities. Because of these differences, the database may serve the interests of deCODE more than it serves the interests of the public, undermining the claim that presumed consent for this data collection and its proprietary use is ethical. We believe that there is an evolving consensus that informed consent of participants must be secured for population-based genetics databases and research. The Iceland model provides an informative counterexample that holds key ethics lessons for similar ventures.

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Biotechnology in the Baltic

Cited by 7 publications

References 0 publications

Genebanks: A Comparison of Eight Proposed International Genetic Databases

Genebanks: A Comparison of Eight Proposed International Genetic Databases

National population-based biobanks for genetic research

“Iceland Inc.”?: On the ethics of commercial population genomics

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