Yes, You Can Reconcile The Wide Sharing Of Personal Medical Research Data With Greater Participant Control | Techdirt
"Although the benefits of sharing big datasets are well-known, so are the privacy issues that can arise as a result. The tension between a desire to share information widely and the need to respect the wishes of those to whom it refers is probably most acute in the medical world. Although the hope is that aggregating health data on a large scale can provide new insights into diseases and their treatments, doing so makes issues of consent even trickier to deal with. A new study of Parkinson's disease from Sage Bionetworks, which describes itself as a 'non-profit biomedical research organization,' takes a particularly interesting approach. Unusually, it used an iPhone app to gather data directly from the participants ... That's a clever use of smartphone capabilities to allow people to become active participants in the study -- citizen scientists, almost -- but hardly a major breakthrough. What is much more impressive is the way in which the study has handled the issue of how widely the resulting data will be shared, and with whom ...