ABSTRACT
Informed consent procedures need to be adapted for use in human genetic banking as this activity carries a different set of often complicated potentials for harm than 'traditional', non-genetic research. The best known human genetic database suitable for pharmacogenomics and population genetics research is the Icelandic collection of the country's health records. The database contains tissue samples and identifiable health data from official medical records and is based on 'opt-out' consent, drawing on a population of 270,000, the database offers enormous potential for genetic research. Detailed medical records of every Icelandic inhabitant have been kept for over fifty years, as have tissue samples for many; genealogical data also exists for most Icelanders. The chapter argues that the individualistic focus of informed consent must be supplemented by pro-active forms of on-going institutional governance, and that this requires greater attention to the duties pertaining to the custodians of gene banks, and to the institutions that fund them.
