Camille Nebeker: Goals for Improving the Informed Consent Process in Behavioral Research

Camille NebekerThis week's guest is Dr. Camille Nebeker, a scientific and research ethics professor and the principal investigator of Connected and Open Research Ethics (CORE) at the University of California, San Diego.  In this podcast, Dr. Nebeker shares the organization’s goals for navigating the privacy issues involved with behavioral research and helping to advance the field in an ethical fashion by joining forces with other institutional reviews boards (IRBs) and researchers. Play the podcast in the player below or download it to your computer, smart phone, or tablet. Or, subscribe to the podcast on iTunes or Stitcher, listen on Google Play Music, or sign up to be notified when a new podcast is available.

Privacy Issues in Behavioral Research

CORE was formed to ethically evaluate mobile health and mobile imaging, pervasive sensing, social media and location tracking (MISST) technologies. It came about initially to look into the complications that arose from researchers using wearable sensors, or sense cams, to see how people behave in real-life environment.

Because the wearable camera faces outward, the collected data included people in the subject’s vicinity who were not involved in the research and had not consented to being recorded.

Additionally, the subjects’ were tracked using GPS, thereby collecting incredibly granular data involving their movements. Issues like these lead to complications regarding how to manage and store that data without violating people’s privacy.

Informed Consent and the CORE Forum

All of this increased invasiveness in modern behavioral research drives CORE and IRBs to figure out how to improve the consent process. This is of particular concern in an era where many people are quick to click the “I Agree” button on the terms and conditions of an app like MyFitnessPal, which collects a great deal of personal data.

CORE's plans include starting a stakeholder engagement process to populate the best practices for securing health and GPS data. The CORE forum currently has a network of 40 privacy experts, IRB members, and researchers. The purpose of the forum is to have researchers provide their consent and protocol documents so that the whole community can work efficiently to help social behavioral research progress ethically. CORE is continuing to grow that community.