For many neurodevelopmental disorders, the gene mutation cause is unknown. A recent article in Scientific American describes the shift to whole exome and genome sequencing studies from three new large-scale research groups. A key problem these researchers face is sharing results and experiences from their studies with other researchers without compromising their own ability to publish. It’s kind of ridiculous that data ownership is sometimes a barrier to collaboration. There is a pervasive fear in the scientific community that if you talk about the specifics of your research you face the possibility of being “scooped”. In the cases of these new studies, individual researchers may find rare mutations that could be involved in the genetics of neurodevelopmental disorders, and sharing these with others in a formal way may result in a confirmation of their findings in a second patient. The problem is, this type of interaction has been informal, and mostly between groups that are already involved in collaboration. We need a system to share data – without losing ownership of it. We need to stop being so scared of getting scooped.
Source - http://www.scientificamerican.com/article.cfm?id=gene-hunt-is-on-for-mental-disabilities-in-children