ABSTRACT
This chapter describes the scientific research strategies in the emerging field of functional genomics and the way in which investigators are using biological sample collections, geneological data and personal medical information to hunt for gene-disease associations. It shows that the use of sample collections cannot be easily separated from the use of medical records and data about family relationships. The public policy objective must be to regulate the creation and dissemination of genetic information in such a way that the maximum benefits for health care and industry are ensured, while protecting research subjects and civil rights. The chapter presents a series of case studies of research involving the use of large biological sample collections and personal medical information. Much of the discussion of sample collections has been sparked by developments in Iceland and the activities of the biotechnology company, deCODE Genetics. The chapter also presents the UK legal framework relating to the ownership of biological materials, patient confidentiality and consent.
