Abstract
We have rapidly entered an era where researchers collect data ‘on-the-fly,’in real-time and, subsequently can design meaningful, personalized and adaptive health interventions. The technologies that we focus on in this paper include devices and apps that enable data collection via Mobile Imaging, pervasive Sensing, Social-media and location Tracking (MISST) methods1, 2. The MISST acronym describes the broad range of devices worn, deployed, carried or implanted to monitor or measure an individual’s behavior, activity, location and assorted biological indicators (eg, sweat, heart rate). In addition to measurement and monitoring, MISST devices are programmed to interact with the research participant or patient to promote, for example, increased exercise or adherence to a medication schedule3–5. While the opportunities are exciting, standards to guide the responsible and ethical conduct of this research are lagging behind creating challenges for Institutional Review Boards (IRBs) and researchers alike. Given the potential for improved individual wellness and decreased health care costs, the ethical and regulatory dimensions must be carefully considered. This rapid acceleration of emerging technologies requires researchers and ethics review boards to become familiar with the functionality such that sufficient knowledge (ie, technology and data literacy) informs the ethical design and conduct (researcher) and appropriate review and oversight (IRB). Currently, academic researchers and IRBs are expected to apply accepted ethical principles of the Belmont Report and adhere to federal regulations governing human subjects protections when planning, conducting and reviewing research6, 7. Likewise, scientists have a social responsibility to carry out their research in keeping with the highest regard for integrity to ensure trustworthy results. Both the National Institutes of Health (NIH) and the National Science Foundation (NSF) require training in the “responsible conduct of research”(RCR) to instill the values that promote research integrity and uphold the public’s trust of the scientific method 8, 9. Nevertheless, stakeholders must be responsive to advances in pervasive
