FREEDOM AND RESPONSIBILITY IN GENETIC TESTING

Extract

Public statements by various international groups emphasize that decisions to undergo genetic screening, either for disease-carrier status or for predisposition-to-disease status, and decisions about the use of the resulting information should be made voluntarily by the party to be screened. For example, the World Medical Association, in its Declaration on the Human Genome Project, says, “One should respect the will of persons screened and their right to decide about participation and about the use of the information obtained.” Giving this principle a name, “voluntarism,” the Council for International Organizations of Medical Sciences, in its Declaration of Inuyama (the host city for the conference), announced that “voluntarism should be the guiding principle in the provision of genetic services.