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+ Mobile Imaging, Sensing, Social & Tracking Ethics The MISST-E Project Camille Nebeker, Ed.D., MS Future Technology and College Student Health Workshop July 30-31, 2015 | Northwestern University |Chicago, IL Slide 2 + New Ethical and Regulatory Considerations Paradigm Shift: We live in an increasingly smart and connected environment and research methods are changing. Research participation is no longer discrete and circumscribed Measurement occurs 24/7 Growing ability to know everything Researchers and IRBs are grappling with the ethics and regulations Slide 3 + What to Do When the IRB Says NO NIH-funded Research Participant free-living activity is recorded for 7-days using: a wearable camera called SenseCam an accelerometer and ActivePAL a GPS tracking device Slide 4 + Perhaps the IRB System IS NOT Responsive to 21 st Century Science? Inconsistent DecisionsPoor ResourcesLack of Disciplinary ExpertiseLack of EvidenceOne Size Cant Fit All Schneider, C.E. (2015).The Censors Hand. MIT Press, Cambridge, MA Slide 5 + Silos? Collaborators? Slide 6 + Questions to Answer What are the risks? What are effective risk management strategies? What does meaningful informed consent look like? What do we know about expectations for privacy? How should data be stored and shared? What about bystanders (i.e., audio and image recording)? Slide 7 + Design, Build and Test Connected and Open Research Ethics (CORE) Formative Methods IRB professionals Researchers Participants Design/Build Framework Prototype Validate/Test IRB professionals Researchers Participants Launch CORE Prototype Slide 8 + Join the CORE! We are recruiting researchers to participate in our formative research. You are eligible if you: use MISST technologies in your research and, want to help design and test our Connected and Open Research Ethics (CORE) prototype Contact: Desk: 858-534-7786 Cell: 619-518-2875 Email: nebeker@ucsd.edu nebeker@ucsd.edu Office: Qualcomm Institute/UCSD @cnebeker