Open data

http://www.nature.com/news/open-data-project-aims-to-ease-the-way-for-genomic-research-1.10507?WT.ec_id=NEWS-20120501

Last summer, biologist Andrew Kasarskis was eager to help decipher the genetic origin of the Escherichia coli strain that infected roughly 4,000 people in Germany between May and July. But he knew it that might take days for the lawyers at his company — Pacific Biosciences of Menlo Park, California — to parse the agreements governing how his team could use data collected on the strain. Luckily, one team had released its data under a Creative Commons licence that allowed free use of the data, allowing Kasarskis and his colleagues to join the international research effort and publish their work¹ without wasting time on legal wrangling.

The Portable Legal Consent will initially deliver data to Synapse, a computational research environment developed by Sage Bionetworks, a non-profit biomedical research organization based in Seattle, Washington. But the project is also developing tools that will allow researchers outside of Synapse to tap into its databases. The project, part of a groundswell of new consumer- and patient-driven models for conducting science², approaches consent in a different way to many genomic studies, by informing donors that it is not possible to guarantee full anonymity of their data, not tying the data to specific studies, and asking researchers to respect broad terms of use — by not attempting to identify data contributors and not sharing the data with others who don't agree to the same terms, for example.