Data Sharing in the Post-Genomic World: The Experience of the International Cancer Genome Consortium (ICGC) Data Access Compliance Office (DACO)
|Originally posted:||13th July 2012: 9:09 am|
|Public - anyone can view|
The scientific community, research funders, and governments have repeatedly recognized the importance of open access to genomic data for scientific research and medical progress. Open access is becoming a well-established practice for large-scale, publicly funded, data-intensive community science projects, particularly in the field of genomics. Given this consensus, restrictions to open access should be regarded as exceptional and treated with caution. Yet, several developments have led scientists and policymakers to investigate and implement open access restrictions –. Notably, there are privacy concerns within the genomics community and critiques from some researchers that open access, if left completely unregulated, could raise significant scientific, ethical, and legal issues (e.g., quality of the data, appropriate credit to data generators, relevance of the system for small and medium projects, etc.) –. A recent paper by Greenbaum and colleagues in this journal identified protecting the privacy of study participants as the main challenge to open genomic data sharing.
by Yann Joly, Edward S. Dove, Bartha M. Knoppers, Martin Bobrow, Don Chalmers