Ethical aspects of human genetic databases: Distinctions on the nature, provision, and ownership of genetic information

Antonio Casado da Rocha

University of the Basque Country

Abstract. This article examines the controversy surrounding the Icelandic Health Sector Database in order to provide an overview of the main ethical aspects of this kind of databases. The background for the discussion is the history of genomic research, which is characterized by a tension between private and public research strategies. After some basic distinctions, arguments for different models of appropriation and control of genetic information are examined. Using some criticisms of genetic exceptionalism, I argue that if information about the genome is as ethically relevant as other kinds of developmental information, then many ethical aspects of the new genetics are quite old. Not only do we need a theory of justice to account for a fair distribution of the benefits of human genetic databases, but we also need an ethics of virtue in order to learn how our societies can be modified so as to achieve greater inclusion for those who suffer genetic diseases.