Since 1999, Estonian, as well as foreign media have expressed considerable interest in the Estonian Genome Project. The media have had a key role in informing people about such an ambitious project, for such a small country.
Coverage in the media
Over the last three years, foreign media have published more than fifty major articles on the Estonian Genome Project. A dozen of these were published in the worlds leading science magazines, Science and Nature. While the leaders of the Genome Project have been interviewed, the laboratory complex itself has been inundated with visits from numerous TV and radio journalists from Germany, the United Kingdom, Finland, Italy, and Latvia.
The Estonian media first covered the subject of the Genome Project in spring 1999. By autumn 1999, the topic had reached most news channels and initial responses were appearing in the public realm. Since that time, the Estonian media has published more than three hundred articles and opinion pieces directly or indirectly connected to the Genome Project. Estonians have been treated to lively debate, including special programmes devoted to the issues involved on Estonian National Television during the years 2000-02 and radio programmes on both public and commercial channels. A list of the articles about the Estonian Genome Project published both in the Estonian and foreign media can be found at the homepage of the Estonian Genome Project Foundation.
In general, the attitude of Estonian and foreign media towards the Genome Project is positive. However, there have been a few sceptical analyses, which can be attributed to the fact that the field of genetics, genes and biotechnology is new to the authors of those analyses. They have failed to grasp either the true nature or future plans of the Genome Project.
Different opinions
Most of the critical articles about the Estonian Genome Project appearing in the Estonian media were written by Tiina Tasmuth. Ms Tasmuth has also aired her views in the foreign media, and in online magazines like openDemocracy. Unfortunately her views are opinions based on a shaky factual foundation.
A typical dissenting view is that millions of Estonian crowns are poured into the Estonian Genome Project, at the expense of overall health care. The fact is the Estonian Genome Project does not siphon any money off from the health care system. On the contrary, the project is an opportunity for both the state and health care institutions to raise funds. The costs of carrying out the project are covered mostly by venture capital from abroad. By the end of the first round of financing in November 2002, major investors included the international venture fund, Small Enterprise Assistance Funds (SEAF), an investment company, Draper Fisher Jurvetson ePlanet Ventures, and a biotechnological-investments-oriented fund Biobank Technology Ventures.
The state of Estonia has earmarked 3 million Estonian crowns, i.e. 225,000 US dollar for the Estonian Genome Project. This state money was used for drafting the Human Genes Research Act and the projects mission statement, and for setting up the Estonian Genome Project Foundation (EGPF). The state will also cover the costs of the Ethics Committee, about 200,000 Estonian crowns per year, or 15,000 US dollar.
But the Estonian Genome Project Foundation has paid 4 million Estonian crowns, 304,000 US dollar, in taxes to the state. This is more than the state has given to the project.
Another argument alleges that the Estonian Genome Project has plans in sight for including children of 7-15 years, and that the plan contradicts the Declaration of Helsinki and other international documents. The truth is that the Estonian Genome Project has no such plan in the near future, although the Human Genes Research Act certainly allows children from seven years old onwards to be included. Moreover, the Ethics Committee of EGPF has started to discuss the topic of including people under 18 years, as a lot of teenagers have asked to participate in the project. But the problems which arise as a result need a public airing and more time to think about them.
One more component of the dissenting view is that the Estonian Genome Project has no independent ethical committee, as the members are appointed by the Supervisory Board of the EGPF and may be removed by them also. What is the reality? The Members of the Supervisory Board are appointed by the Estonian Parliament, the Government of Estonia and the Estonian Academy of Sciences. Could you imagine all these institutions purposefully electing irresponsible people onto the Ethics Committee? Both the functions and rights of the Ethics Committee of EGPF are covered by the Human Genes Research Act. EGPF strictly follows all the legal injunctions laid down by the relevant international working group, and guidance has been obtained from all the available international documents dealing with genetic research.
What about public opinion and awareness?
Emor the most comprehensive marketing research and consulting company in Estonia has carried out five investigations in order to establish the levels of awareness and the opinions of the Estonian population regarding the Genome Project. The last one was conducted in March 2003. The investigation included 500 citizens of the Republic of Estonia (age 15 to 74 years).
It emerged that 65% of the population of Estonia were well-informed about the Estonian Genome Project. There were more informed people in the counties of the pilot project (75%), while only 6% of inhabitants throughout the country knew about it, and as little as 2% in the counties where the pilot project took place, said that they were against the project.
The tests culminated in several opinion-statements. Those polled were asked to select a response: completely agree, mostly agree, rather not agree or not agree. One of those statements suggested that the Estonian Genome Project is carried out in the interests both of the state and of the people of Estonia. More than three-quarters of those who replied said that they completely or mostly agree. This number is far more telling than any number of words in however many articles.
