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Biotechnology in Estonia, 2005

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Estonian, British Databases Use "Opt-In" Policies
15.07.2004

Author: STEPHANIE OVERBY
SCIENTISTS AROUND the world attempting similar genetic database projects have been watching DeCode's troubles closely, says Dr. Russ B. Altman, associate professor of genetics, medicine and computer science at the Stanford University Medical Center. Altman says that DeCode's public relations problems in Iceland made health database projects in other countries "more careful about the issue of privacy."

Other database projects include citizens in their databases based on consent that is informed (individuals must opt in) rather than presumed. That's the case with both the Estonian Genome Project Foundation, created by the government in 2001 to study the former Soviet republic's caucasian population—one that is more diverse than Iceland's—and the UK Biobank at the University of Manchester.

The UK Biobank, which aims to be the world's biggest resource for the study of nature and nurture in health issues by involving up to half a million participants, has also set up an ethics council to support research into ethical issues raised by the project and says it will allow "no exclusive access to [its database] by any one organisation or commercial company."

Efforts to reassure local populations have gone a long way. "I think that DeCode was already having sufficient troubles with public relations that the other efforts were more careful about the issue of privacy. Estonia seems to have gotten a system that people are happy with. The British effort seems to have addressed these issues satisfactorily," says Altman, who is a past president of the International Society for Computational Biology. "Although it might be a setback for DeCode, it might be a vindication of these other efforts and their approaches."

Source: CIO Magazine

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