The growing prevalence of data-rich networked information technologies—such as the internet of things, wearable devices, ubiquitous sensors, and social sharing platforms—brings an increase in the flow of rich, deep, and often identifiable personal information available for researchers. As the Computational Social Science group at Microsoft Research notes:
With an increasing amount of data on every aspect of our daily activities—from what we buy, to where we travel, to who we know, and beyond—we are able to measure human behavior with precision largely thought impossible just a decade ago, creating an unprecedented opportunity to address longstanding questions in the social sciences.
More than just “big data,” the datasets envisioned above are unique in that they represent people’s lives and activities, bridge multiple dimensions of a person’s life, and are often collected, aggregated, exchanged, and mined without them knowing. We call this data “pervasive data,” and the increased scale, scope, speed, and depth of pervasive data available to researchers require that we confront the ethical frameworks that guide such research activities.
The NSF-funded PERVADE project (Pervasive Data Ethics for Computational Research) brings together a multi-disciplinary team to tackle these ethical issues head-on. With expertise in social science, computational science, research ethics, law, and policy, this team of researchers is applying qualitative and quantitative research methods to better understand how diverse stakeholders—big data researchers, platforms, regulators, and user communities—understand their ethical obligations and choices related to computational research that relies on big, pervasive data sets about people.
Survey of IRB Members
The PERVADE team is particularly interested in how IRB members think about pervasive data research. For example, we want to learn how IRB professionals make decisions about the use of pervasive data in cases not explicitly covered by the Common Rule. How do IRBs define public or repurposed data? What are the biggest challenges for IRBs when reviewing big data research protocols?
To help gain insight to these issues, IRB members are invited to participate in a survey containing questions about your attitudes and practices around regulating big data collection and use. The survey asks for anonymous reporting of whether your IRB regularly reviews research that relies on pervasive data, the kind of training or resources your IRB members rely on to review such submissions, and your professional assessment of numerous hypothetical research protocols.
The survey takes about 30 minutes to complete and participation is completely voluntary. We invite the PRIM&R community to participate and help improve our understanding of how IRBs are navigating the ethics of big data research.