The Rise and Fall of the Estonian Genome Project

Abstract

This paper presents the case study of the Estonian Genome Project (EGP) during its initial phase from 2001 to 2007. In these years, the EGP was an independent foundation established by the Estonian government and almost fully financed by foreign and local private venture capital. In essence, it was a public-private partnership in science, research and development. At the end of 2004, this governance structure broke down and private funding was pulled from the project. The paper discusses what went wrong with the EGP and what the main policy lessons are, namely that particularly developing and transition countries like Estonia with low administrative and policy implementation capacity should approach public-private partnerships in high-tech research and development with high caution as conflicts of interests and loss of accountability seem likely; this is particularly the case in biotechnology because of the high scientific and business uncertainty characteristic of the field.

2010 Presidential Address: Culture: The Silent Language Geneticists Must Learn— Genetic Research with Indigenous Populations

“…Some of the anticipated benefits are better healthcare, better healthcare delivery, development of gene technology, medical-sector infrastructure, and economic benefits (including jobs, investments, and education). Although not all has been smooth sailing, 40 the aspirations for the EGP expressed by the people of Estonia are little different from the expectations from research that aboriginal Canadians have expressed in the CIHR Guidelines. In other words, why should indigenous populations expect less?…”

Biobanking strategies and regulative approaches in the EU: recent perspectives

“…25 Estonia's database started as a private foundation in the framework of a nongovernmental organization as this "seemed to enable the involvement of private funding without many regulatory problems". 26 However, this framework failed.…”

Measuring Public Entrepreneurship of Quangos

“…The aim of the EGCUT is to create a database of health, genealogical and genome data representing 5% of Estonia's population. Although the organisational form of EGCUT has varied substantially over time, the basic aim has been kept (Kattel, Suurna, 2008).…”

“…As EGeen retained the right to commercialise the research results for 25 years, it was obligated to make fixed annual payment and additional fees depending on its financial success for its right to commercialise the data. The Ministry of Social Affairs being responsible for the EGCUT did not have any competence for handling risky economic projects (Kattel, Suurna, 2008), but also the conflict of interest between public goals set and profit motives of EGeen (Menrad et al, 2002) hindered the development of entrepreneurship. 24 However, in 2010-2011 the ECGUT budget was composed of government funding (30%) and research project funding (70%) and the role of the centre has changed respectively, incorporating more research-oriented activities (Estonian Genome Center, 2001-2011.…”

“…They also exist in Germany and appear in some form of private or public law. One finds them in other European countries, such as the Netherlands (Verschuere, 2006), Sweden, Estonia (Kattel, Suurna, 2008) and others. The debate concerning quangos focuses mainly on their definition, their scope of autonomy and whether they fit the responsibility of governments and the respective parliaments of jurisdictions.…”