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 th...

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Detalhes bibliográficos
Main Authors: Gibbons, S, Kaye, J
Formato: Journal article
Idioma:English
Publicado em: 2007
Descrição
Resumo: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.