Description and DNA Collection
Chairman of the Management Board of the Estonian Genome Foundation
The idea of a national gene bank – Estonian Genome Project – was proposed by Andres Metspalu, a professor of biotechnology at the University of Tartu. Regarding the fact that Estonians are a representative droplet from the European gene pool, the idea had two goals. First, to identify disease genes by comparing genotypes within a group of patients with a given disease. Second, to set up a health care database that would give Estonians access to their own data, so they can benefit from the personalized medicine of the future.
The project was first presented to politicians and the public in 1999 and was developed by a group of scientists under the supervision of the Estonian Genome Foundation (EGF), a non-profit body founded in January 1999 by Estonian scientists, doctors, and politicians to support genetic research in Estonia.
Planning of the Estonian Genome Project began in March 1999 with an agreement between the Estonian government and the EGF. Just days before the announcement of the newly decoded human genome in June 2000, a draft project was submitted to the Estonian Ministry of Social Affairs.
The next step was to establish a legal framework that was considered to be a prerequisite for such a large-scale innovative project that involved the majority of the population. It was also agreed that the project must be carried out by a government-backed structure and regarding a set of principles based
Bartha Maria Knoppers (ed.), Populations and Genetics: Legal and Socio-Ethical Perspectives. © 2003 Koninklijke Brill NV. Printed in the Netherlands.