Whether patients, or part of traffic, or exercising or simply walking with one of the behavioral trackers du jour, we are constantly giving data about ourselves and our surroundings to data collecters with few returns. From privacy regulations to bureaucratic barriers to collecting and locking up information just in case it might create monetary value in the future, there are a multitude of barriers between those who collect information and those who want to use it.
With support from Robert Wood Johnson Foundation (RWJF), we are launching two projects exploring different aspects that often get in the way of easy sharing of citizen-sourced information.
In collaboration with the Institute for Human Genetics and EngageUC at UCSF, and Personal Genome Project at Harvard University, we will explore the practical, ethical and legal implications of emphasizing benefits of sharing over the need for privacy at a workshop planned for Spring 2015 in Washington DC. A few of the questions to be tackled at the workshop: What if, instead of emphasizing the imperative of protecting privacy, we emphasized the potential benefits from sharing? Would most patients agree to let their information be shared? more →
Partnering with Manylabs, a San Francisco-based sensor tools and education nonprofit, and Urban Matter, Inc., a Brooklyn-based design studio, and in collaboration with the City of Louisville, Kentucky, and Propeller Health, maker of a mobile platform for respiratory health management, we will design, develop and install a network of sensor-based hardware that will collect environmental information at high temporal and spatial scales and store it in a software platform designed explicitly for storing and retrieving such data.
Further, we will design, create and install a public data art installation that will be powered by the data we collect thereby communicating back to the public what has been collected about them. more →Comments Off on Examining deficiencies of and limitations on data sharing