GOVERNING GENETIC DATABASES: COLLECTION, STORAGE AND USE.
This paper provides an introduction to a collection of five papers, published as a special symposium journal issue, under the title: "Governing Genetic Databases: Collection, Storage and Use". It begins by setting the scene, to provide a backdrop and context for the papers. It describes the evolving scientific landscape around genetic databases and genomic research, particularly within the biomedical and criminal forensic investigation fields. It notes the lack of any clear, coherent or coordinated legal governance regime, either at the national or international level. It then identifies and reflects on key cross-cutting issues and themes that emerge from the five papers, in particular: terminology and definitions; consent; special concerns around population genetic databases (biobanks) and forensic databases; international harmonisation; data protection; data access; boundary-setting; governance; and issues around balancing individual interests against public good values.
Dr Jane Kaye is a Research Officer with the Oxford Genetics Knowledge Park. She is based at the Ethox Centre, University of Oxford and is a principal investigator on a three-year project entitled "Governing Genetic Databases", funded under the Wellcome Trust's Biomedical Ethics programme (award ref: 076070/Z/04/Z). Dr Sue Gibbons is a Researcher in Law at the Ethox Centre, University of Oxford, and is undertaking legal research as part of that three-year project.
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