The weekly SRI Seminar Series welcomes Katie Shilton, an associate professor in the College of Information Studies at the University of Maryland, College Park, who leads the Ethics & Values in Design (EViD) Lab. Shilton’s research explores ethics and policy for the design of information technologies.
In this seminar, Shilton explores the use of pervasive data—large datasets about the identity, behaviour, or characteristics of people—and the ethical questions that arise regarding the development of norms and practices of using this data for research, within and beyond clinical settings. Drawing on a recent project, Shilton will discuss ways that health researchers working with pervasive data can reflect on data norms and data ethics.
This event is co-hosted by the University of Toronto’s Joint Centre for Bioethics.
Talk title:
“Designing for trust in health research with pervasive data”
Abstract:
Pervasive data refers to large datasets about people’s identity, behavior, or characteristics, typically spanning multiple domains of their lives, and collected through digital interactions. Health researchers and data scientists who use or seek to use big, pervasive data for health research purposes face a significant challenge: how to navigate norms and practices for ethical and trustworthy data use in research within and beyond clinical settings. With a team at the University of Maryland and five other institutions, we have been exploring this challenge in the Pervasive Data Ethics for Computational Research (PERVADE) project. This project has explored design and practice responses to two entwined trust problems: data subject unawareness of many forms of pervasive data research, and the relationship of some health data research to corporate datafication and surveillance. This talk will introduce PERVADE's research findings and design responses, including a prototype decision support tool for big data researchers and data scientists. We will discuss ways that the tool might better support health researchers working with pervasive data to reflect on data norms and data ethics.
About Katie Shilton
Katie Shilton is an associate professor in the College of Information Studies at the University of Maryland, College Park. Her research focuses on technology and data ethics. She is the PI of the PERVADE project, a multi-campus collaboration focused on big data research ethics. Other projects include improving online content moderation with human-in-the-loop machine learning techniques; analyzing values in audiology technologies and treatment models; and designing experiential data ethics education. She is the founding co-director of the University of Maryland’s undergraduate major in social data science. Her work has been supported by multiple awards from the U.S. National Science Foundation. Katie received a BA from Oberlin College, a Master of Library and Information Science from UCLA, and a PhD in Information Studies from UCLA.
About the SRI Seminar Series
The SRI Seminar Series brings together the Schwartz Reisman community and beyond for a robust exchange of ideas that advance scholarship at the intersection of technology and society. Seminars are led by a leading or emerging scholar and feature extensive discussion.
Each week, a featured speaker will present for 45 minutes, followed by an open discussion. Registered attendees will be emailed a Zoom link before the event begins. The event will be recorded and posted online.
About the Joint Centre for Bioethics
The University of Toronto Joint Centre for Bioethics studies important ethical, health-related topics through research and clinical activities in partnership with other academic and health sector institutions locally and internationally. Our mission is to provide leadership in bioethics research, education, and practice. At the JCB, we put theory into practice to improve health.