Charlotte’s Biosurveillance Series, Inverting the Panopticon: App-Mediated Research

The UNC Charlotte Center for Professional and Applied Ethics presents Megan Doerr, MS, LGC (Principal Scientist, Governance Sage Bionetworks) as part of the Bioethics Resource Network's biosurveillance series.

Abstract
Although most have moved beyond the use of “subject,” participants are often still viewed as objects of information rather than partners in communication in the research ecosystem. App-mediated research studies are a natural opening for participant-centered research designs. At the same time, the promise of relatively facile and frequent data sampling makes app-mediated studies appealing to researchers but may introduce new risks for participants. How can we leverage the features of this novel system to maximize public benefit with participants and researchers sharing time “under the microscope”?

Biography
A former botanist and middle school teacher, Meg Doerr joined the genetic counseling community in 2006. Meg led the clinical development and implementation of Cleveland Clinic’s family history and risk assessment tool before joining the Governance team at Sage Bionetworks in 2015. At Sage, Meg’s efforts have been concentrated on supporting innovative, participant-centric approaches in open science. Her work has a strong focus on app-based research, including the ELSI issues associated with informed consent, research participation, and data sharing for secondary use in entirely remote, mobile platform-based research studies.