ABSTRACT
This chapter analyses the conditions necessary to safeguard the right to private life of individuals whose personal informational sources are used in the research. It focuses on information and consent and on protection of privacy. Issues of an organisational and procedural nature are less controversial. Research with a combination of large scale collections of tissue samples, medical data, family history genealogical information and environmental factors holds many prospects for improvements in health. Bio-banks are set up in the public sphere and on a commercial basis. If created in the public sector, access to the material is in principle open to a great number of researchers for a variety of research activities. Tissue research has many parallels with medical research on individual research participants and with research using personal medical data, but there are also differences. The family interest in protection of privacy was recently recognised in an Icelandic Supreme Court decision.
