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Innovation in the life sciences, particularly in biotechnology and genetics, contributes significantly to sustainable growth and development of economies as well as addressing social and global challenges. Biomedical research involving human genetic or genomic information analysed in conjunction with personal or health data is particularly promising and will be critical to improvements in the prevention, detection, diagnosis, treatment, and cure of disease and for the development of new products and services.
The use and exchange of human genetic material and the information derived from it, is not without some controversy. Within the scientific community, there is consensus that progress in understanding disease will depend on the establishment, harmonisation and broad use of human biobanks and genetic research databases.
Human biobanks and genetic research databases which bring together and allow the sharing of human biological material and information derived from its analysis, are a key element of the scientific infrastructure underpinning such research. In October 2009, the OECD Council adopted a Recommendation on Human Biobanks and Genetic Research Databases (HBGRD). Click here to download.
The recommendation provides guidelines for the establishment, management, governance, operation, access, use and discontinuation of HBGRDs. It recognises that one of the fundamental objectives of an HBGRD is to foster scientific research. Overall, it seeks to facilitate wide access to data and materials for biomedical advances while ensuring that research is conducted in a manner respectful of participants, and that upholds human dignity, fundamental freedoms and human rights.
As background work, an OECD book entitled Creation and Governance of Human Genetic Research Databases provides an analysis of a number of complex issues that arise in the establishment, governance, management and use of HBGRDs.