Yes, You Can Reconcile The Wide Sharing Of Personal Medical Research Data With Greater Participant Control

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:

The mPower app, built by Sage with support from the Robert Wood Johnson Foundation, collects data on capacities affected by Parkinson's disease, including dexterity, balance and gait, memory, and certain vocal characteristics, through tasks that make use of iPhone sensors. For example, to measure dexterity, participants complete a speed tapping exercise on their iPhone’s touchscreen. To evaluate speech, participants use their iPhone's microphone to record themselves pronouncing a vowel -- saying Aaaaah -- for 10 seconds. The app also allows participants to track when each task is completed alongside the time they take their medication, to help determine the effects of that medicine on their symptoms. Participants also complete regular surveys, rating the severity of their symptoms and what they think makes them better or worse.

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...