Morality of the privacy of genetic information: possible improvements of procedures

Genetic screening has opened up new paths for progress in preventive and curative medicine, and will probably progressively increase its positive contribution in the future. Rules and regulations have been established attempting to protect the donors' rights and to avoid damage to the donor and to others. Present day regulations seem unable to prevent the occurrence of serious problems and possible dangers. These are: 1. Ownership of genetic information and right to determine to whom it is divulged. 2. Direct emotional damage to individuals (mainly young persons expecting late-onset catastrophes) by having the information. 3. Damage caused by unsought for findings. 4. Restriction of transfer of information to the stated aim. 5. Right to release information important for public safety. The aim of this article is to propose that the donor's ownership of the information be abolished and that a board should decide to whom the genetic information should be given. An alternative solution is to leave the decisions regarding to whom genetic information should be divulged in the hands of the donor and his physician, controlled by an institutional review board.