In recent years, the amount of information collected about human beings has increased dramatically. This development has been partially driven by individuals posting and storing data about themselves and friends using online social networks or collec
ting their data for self-tracking purposes (quantified-self movement). Across the sciences, researchers conduct studies collecting data with an unprecedented resolution and scale. Using computational power combined with mathematical models, such rich datasets can be mined to infer underlying patterns, thereby providing insights into human nature. Much of the data collected is sensitive. It is private in the sense that most individuals would feel uncomfortable sharing their collected personal data publicly. For this reason, the need for solutions to ensure the privacy of the individuals generating data has grown alongside the data collection efforts. Out of all the massive data collection efforts, this paper focuses on efforts directly instrumenting human behavior, and notes that -- in many cases -- the privacy of participants is not sufficiently addressed. For example, study purposes are often not explicit, informed consent is ill-defined, and security and sharing protocols are only partially disclosed. This paper provides a survey of the work related to addressing privacy issues in research studies that collect detailed sensor data on human behavior. Reflections on the key problems and recommendations for future work are included. We hope the overview of the privacy-related practices in massive data collection studies can be used as a frame of reference for practitioners in the field. Although focused on data collection in an academic context, we believe that many of the challenges and solutions we identify are also relevant and useful for other domains where massive data collection takes place, including businesses and governments.
Human brain activity collected in the form of Electroencephalography (EEG), even with low number of sensors, is an extremely rich signal. Traces collected from multiple channels and with high sampling rates capture many important aspects of participa
nts brain activity and can be used as a unique personal identifier. The motivation for sharing EEG signals is significant, as a mean to understand the relation between brain activity and well-being, or for communication with medical services. As the equipment for such data collection becomes more available and widely used, the opportunities for using the data are growing; at the same time however inherent privacy risks are mounting. The same raw EEG signal can be used for example to diagnose mental diseases, find traces of epilepsy, and decode personality traits. The current practice of the informed consent of the participants for the use of the data either prevents reuse of the raw signal or does not truly respect participants right to privacy by reusing the same raw data for purposes much different than originally consented to. Here we propose an integration of a personal neuroinformatics system, Smartphone Brain Scanner, with a general privacy framework openPDS. We show how raw high-dimensionality data can be collected on a mobile device, uploaded to a server, and subsequently operated on and accessed by applications or researchers, without disclosing the raw signal. Those extracted features of the raw signal, called answers, are of significantly lower-dimensionality, and provide the full utility of the data in given context, without the risk of disclosing sensitive raw signal. Such architecture significantly mitigates a very serious privacy risk related to raw EEG recordings floating around and being used and reused for various purposes.
This paper describes the deployment of a large-scale study designed to measure human interactions across a variety of communication channels, with high temporal resolution and spanning multiple years - the Copenhagen Networks Study. Specifically, we
collect data on face-to-face interactions, telecommunication, social networks, location, and background information (personality, demographic, health, politics) for a densely connected population of 1,000 individuals, using state-of-art smartphones as social sensors. Here we provide an overview of the related work and describe the motivation and research agenda driving the study. Additionally the paper details the data-types measured, and the technical infrastructure in terms of both backend and phone software, as well as an outline of the deployment procedures. We document the participant privacy procedures and their underlying principles. The paper is concluded with early results from data analysis, illustrating the importance of multi-channel high-resolution approach to data collection.
Combining low cost wireless EEG sensors with smartphones offers novel opportunities for mobile brain imaging in an everyday context. We present a framework for building multi-platform, portable EEG applications with real-time 3D source reconstruction
. The system - Smartphone Brain Scanner - combines an off-the-shelf neuroheadset or EEG cap with a smartphone or tablet, and as such represents the first fully mobile system for real-time 3D EEG imaging. We discuss the benefits and challenges of a fully portable system, including technical limitations as well as real-time reconstruction of 3D images of brain activity. We present examples of the brain activity captured in a simple experiment involving imagined finger tapping, showing that the acquired signal in a relevant brain region is similar to that obtained with standard EEG lab equipment. Although the quality of the signal in a mobile solution using a off-the-shelf consumer neuroheadset is lower compared to that obtained using high density standard EEG equipment, we propose that mobile application development may offset the disadvantages and provide completely new opportunities for neuroimaging in natural settings.
