Abstract
Mobile Imaging, pervasive Sensing, Social media and location Tracking (MISST) tools used in research are raising new ethical challenges for scientists and the Institutional Review Boards (IRBs) charged with protecting human participants. Yet, little guidance exists to inform the ethical design and the IRB’s regulatory review of MISST research. MISST tools/methods produce personal health data that is voluminous and granular and, which may not be subject to policies like the Health Information Portability and Accessibility Act (HIPAA). The NIH Research Portfolio Online Reporting Tools (RePORTER) database was used to identify the number, nature and scope of MISST-related studies supported by the NIH at three time points: 2005, 2010 and 2015. The goal was to: 1-examine the extent to which the NIH is supporting this research and, 2-identify how these tools are being used in research. The number of funded MISST research projects increased 384% from 2005 to 2015. Results revealed that while funding of MISST research is growing, it only represented about 1% of the total NIH budget in 2015. However, the number of institutes, agencies, and centers supporting MISST research increased by roughly 50%. Additionally, the scope of MISST research is diverse ranging from use of social media to track disease transmission to personalized interventions delivered through mobile health applications. Given that MISST research represents about 1% of the NIH budget and is on an increasing upward trajectory, support for research that can inform the ethical, legal and social issues associated with this research is critical.
Highlights
Mobile Imaging, pervasive Sensing, Social media and location Tracking (MISST) technologies including but not limited to mobile applications or “apps”, fitness tracking devices and social networking platforms are becoming increasingly prevalent in present society
In the ten-year period between 2005 and 2015, the number of awards allocated to MISST research by the institutes, agencies, and centers included on the National Institutes of Health (NIH) RePORTER increased 384% from 134 awards in 2005 to 649 awards in 2015
We learned that MISST research has increased 384% in little more than a decade and has nearly doubled in the past 5 years yet, still reflects only about 1% of NIH expenditures
Summary
Mobile Imaging, pervasive Sensing, Social media and location Tracking (MISST) technologies including but not limited to mobile applications or “apps”, fitness tracking devices and social networking platforms are becoming increasingly prevalent in present society. At the same time as these devices are being used by individuals as sources of entertainment, organization, and socialization, they are being used by scientists to conduct research in areas ranging from disease transmission,[1] to substance abuse[2] and weight loss.[3]. These digital and pervasive sensing technologies are becoming valuable tools for many scientists; researchers and the institutional review boards (IRBs) charged with protecting human research participants are struggling to understand how to best inform prospective participants, as well as manage the collection, analysis and sharing of data acquired through these technologies. These new challenges combined with static federal regulations to guide human research protections and ethical principles[4] developed when research was conducted using more traditional methodologies, may contribute to longer than typical
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