The devil, as the old saying goes, is in the details. Or, in the case of the new Estonian law setting up a national genetic data bank, there is reason for concern that the devil may get involved in the actual workings of that country's Human Gene Research Act (See "Gene Pool Expeditions," page 1).
The authors of the 34-section act have made a serious effort to prevent misuse of the data and to protect gene donors' rights and privacy. Participation in the project is strictly voluntary, on the basis of informed consent. It will be illegal to ask anyone if he or she is participating in the free program. People won't be paid for providing a tissue sample, medical, and family history to the Estonian Gene Bank. That information is immediately given "a unique code consisting of at least 16 random characters." Genetic and medical data become and remain ...
