Genome forum highlights Estonian progress

TALLINN - An international conference, Gene Technology Forum 2001, held in the Estonian city of Tartu Sept. 13-15 helped lay the foundations for Estonia's Genome Project, which gets under way next year.

Over 400 scientists from Scandinavia, Western Europe, North America and the Baltic states attended the conference, the second of its kind in Estonia, on this exciting field of research.

The main aim of the Estonian Genome Project is to create databases of health and gene data gathered from the Estonian population which will help researchers find the genes that cause and influence diseases.

The Estonian Genome Project Foundation, which will carry out the genome project, was established on March 6, 2001.

The project's supervisors hope to persuade 10,000 people to donate blood. Talks with possible investors will be completed by Christmas, according to the foundation.

Jaanus Pikani, head of the foundation's supervisory council, said genetic material would only be taken with the voluntary consent of donors. After giving a blood sample each donor will be given a personal code. If at any time they wish to sign out of the project they can ask for the key linking them to material they have donated to be destroyed, thus making the material anonymous.

The issue of privacy is currently exercising the project's opponents. They hypothesize that data such as the donor's blood group, chronic diseases they may have and genetic immunity to disease might be accessed by hackers. Donors might then face discrimination from potential employers or insurance companies which got hold of the information.

Andres Metspalu, professor of biology and one of the Genome Project's founders, believes the possibility of tracking down blood donors must remain. "Otherwise research would be hindered, and it would be impossible to inform donors about their health and genes."

At a conference session he tried to reassure the skeptical, "Under the project's legislation misusing data is punishable by a jail sentence."

In the long term it is hoped the genome database will contain genetic information on about a million Estonian residents. It is thought that as the population's genetic characteristics became better understood the prescribing of drugs will become more precise.

"Studies show that about 40 percent of the prescriptions for drugs which doctors write have no effect on patients," said Klaus Lindpaintner, director of Roche Genetics, a Swiss company.

Pikani added the project will yield practical results for the next generation of the population. The first findings on disease risk may take 15 years to produce.