New Gene Bank Plan Faces Opposition

TALLINN, ESTONIA--Scientists are hoping to catalog information on the health status and genetic makeup of more than 70% of Estonia's population of 1.4 million. The database would be accessible to private companies as well as doctors able to use the information to provide care better tailored to individuals. But the plan, presented to the Estonian government last month, is being criticized by some people who say Estonia is wiser to spend its scarce resources on education campaigns on the hazards of smoking and other unhealthy behaviors.

A similar nationwide project in Iceland has provoked fierce debate there and around the world. Researchers, medical ethicists, and data-protection specialists in many countries lobbied the Icelandic government last year not to pass a law giving a genetics company access to the health records of the entire country (Science, 1 January, p. 13). Since then, some physicians and patients have refused to cooperate in building up the genetic database.

Estonian biotechnologist Andres Metspalu of the University of Tartu identifies two main goals for his country's project. One is to identify disease genes--particularly those involved in conditions with complex origins, such as asthma and heart disease--by comparing genetic sequences within a group of patients with a given disease. The second goal is 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. "This database would allow individuals to gain knowledge of disease risks and to receive the most effective medication," says Metspalu.

Estonia's Genome Center Foundation estimates that collecting data on 1 million people will cost $90 million to $150 million over 10 years, but it expects that more than half the costs will be covered by companies buying rights to use the data for genetic research. The Estonian government reacted favorably, last month naming the gene bank proposal as one of three large-scale national projects to receive state funding next year. Assuming that governmental and public approval is forthcoming, the researchers hope to begin gathering data and sampling blood from consenting Estonians by 2001.

But the proposal may not get an easy ride: As news of the plan begins to leak out, it is provoking a heated reaction in some medical circles. "With an underfunded health care system and a population that would benefit more from a focus on lifestyle factors, such as smoking and abuse of alcohol and drugs, we should not enter into expensive high-tech endeavors," says Tiina Tasmuth, a professor of medical education at the University of Tallinn.

Posted in Europe, Biology