Estonian Parliament enacts genome law

  • 2000-12-21
  • Kairi Kurm
TALLINN - Parliament enacted a law on Dec. 13 allowing the creation of a nationwide gene bank in Estonia. The Human Genes Research Act was enacted by a vote of 42 to three with one abstention.

"It was a very progressive step taken by the Estonian Parliament," said Jaanus Pikani, chairman of the supervisory board at the Estonian Genome Foundation.

He said that Estonia is one of the first countries to regulate human gene research and other countries should follow in the future. Genetic research is also regulated in Iceland and partly in Great Britain and Canada.

Minister of Social Affairs Eiki Nestor said that unlike the genome research act of Iceland, the Estonian law was a step further because it would allow the identification of gene donors when technology advanced so far that it would become possible to treat their diseases. He said that rapid progress in scientific research would have led to genomes anyway and it was good to have the proper legislation before it happened.

"If genome research were not regulated in Estonia, data could be misused," said Pikani. "Now people know what rights they have and how their genome data will be used."

The new law regulates how a human genome should be researched, how health data bases of the Estonian population should be created and stored. The act also guarantees a gene donor's basic right to maintain his privacy.

According to the genome law the gene bank may be used only for scientific research, research and treatment of illnesses of gene donors, public health research and statistical purposes. Use of the gene bank for other purposes, especially for collecting evidence in civil or criminal proceedings or surveillance, is banned.

A gene donor's doctor also has the right to obtain a decoded description of the gene donor's health status from the gene bank for his treatment on his consent.

Although participation in the process is strictly voluntary, initiators are hoping to collect data on a million people for the reserve within five years. At first an institution should be created next to the Ministry of Social Affairs, which would take over the administration of the gene project from the Estonian Genome Foundation, said Pikani.

"The genome foundation, which is a small institution created by private persons two years ago, will probably start looking for foreign investments," said Pikani. He said that a number of foreign investors had already expressed interest in the project, but the genome foundation didn't have any authorization to deal with it at the moment.

According to preliminary estimates, the gene reserve project will cost about 1.5 billion kroons ($84 million), one-third of which will be provided by the state and the rest by Estonian and foreign private capital.

After an institution has been created a six-month pilot project is started, for which a data base of about 10,000 people is established with the help of 40 doctors. Pikani believes that the institution will start the pilot project in July or August next year and the real five-year project will be started in 2002.

Andres Metspalu, a professor of biotechnology at Tartu University and a key figure in developing the gene project, is confident that Estonia's gene bank plan will not only advance gene science but also promote the growth of a biotech industry which will allow Estonians to benefit from gene-specific drugs now being developed.