ETHICAL REVIEW BOARDS AND PERVASIVE DATA RESEARCH: GAPS AND OPPORTUNITIES

Resumen

The growing prevalence of data-rich networked information technologies—such as social media platforms, smartphones, wearable devices, and the internet of things —brings an increase in the flow of rich, deep, and often identifiable personal information available for researchers. More than just “big data,” these datasets reflect 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. Multiple stakeholders are embroiled in the challenges of research ethics in pervasive data research: researchers struggle with questions of privacy and consent, user communities may not even be aware of the widespread harvesting of their data for scientific study, platforms are increasingly restricting researcher’s access to data over fears of privacy and security, and ethical review boards face increasing difficulties in properly considering the complexities of research protocols relying on user data collected online. The results presented in this paper expand our understanding of how ethical review board members think about pervasive data research. It provides insights into how IRB professionals make decisions about the use of pervasive data in cases not obviously covered by traditional research ethics guidelines, and points to challenges for IRBs when reviewing research protocols relying on pervasive data.