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This page can be accessed directly at
www.oecd.org/sti/biotechnology/hbgrd
The completion of the mapping of the human genome under the Human Genome Project has opened huge potential for research into the ways in which genes relate to human conditions, diseases, capacities, impairments and susceptibilities. These advances in our understanding of genetics and genomics have also lead to the emergence of other “omics” sciences, such as proteomics, transcriptomics, and metabolomics.
Research involving the human genome and resulting applications open up new prospects in improving the health of individuals and of humankind as a whole. The success of such research is dependent on sharing knowledge comprised of data, biological samples and information derived from the analysis of those samples.
The ability to effectively use these vast amounts of knowledge will depend in part on the bringing together of different strands of information and data within resources such as human biobanks and genetic research databases (HBGRDs). Current uses of HBGRDs are already contributing significantly to our understanding of genetic and environmental factors that influence disease risk and treatment.
To serve these research purposes, there are many different types of HBGRDs being established, including cross-sectional, longitudinal, large-scale, disease-specific, or population-based. Such resources will provide platforms for international collaboration on a scale not previously attained. However, establishing such HBGRDs raises numerous challenges.
As background work, a report was produced which provides an analysis of a number of complex issues that arise in the establishment, governance, management and use of HBGRDs.
The OECD has been working on developing guidelines for Human Biobanks and Genetic Research Databases (HBGRDs) intended to assist both OECD member countries and non-OECD economies in the development of policies applicable to HBGRDs. The guidelines will aim to offer principles and best practices for and are targeted at all those involved in the establishment, governance, management and use of human biobanks and genetic research databases. They also aim to provide guidance on legal, administrative, financial, institutional and social aspects.
Draft guidelines were developed by experts nominated by the OECD member countries. A number of expert drafting meetings were held over the course of 2007 and the beginning of 2008. Experts included those who manage and are involved with national or international biobanks, human genetic research databases, or collections, policy makers, researchers, lawyers, ethicists, and private sector representatives.
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