Bioethics Blogs

Confronting the Potential and Pitfalls of Mobile Technology and Privacy

by Jim Gearhart, BA, Member of the Board of Directors for Quorum Review IRB

PRIM&R is pleased to share a post from Jim Gearhart, a member of the PRIM&R Blog Squad for the 2014 Advancing Ethical Research (AER) Conference. The PRIM&R Blog Squad is composed of PRIM&R members who will blog here, on Ampersand, about the conference to give our readers an inside peek of what’s happening December 4-7 in Baltimore, MD. 

PRIM&R’s 2014 AER Conference got off to an inspiring start on Friday with perceptive discussions on technology, privacy, and the ethics of research. The conference’s first keynote speaker John Wilbanks shared the innovations that his company is bringing to clinical research through mobile device technology. Sage Bionetworks, where Mr. Wilbanks is the chief commons officer, has assembled a set of mobile device tools to make research participation more convenient. For instance, the accelerometer of a smart phone measures the participant’s strides and level of activity throughout the day. The touch screen can administer a finger-tapping test. And the smartphone can provide interactive, multimedia study information that combines visual icons with text, and prompts responses from the subject to demonstrate understanding.

Mr. Wilbanks told the crowd that his efforts emphasize gathering information for medical research. To demonstrate his point, he put on the screen the dataset of Facebook’s emotional contagion study and issued a challenge: what kind of information might the data from 689,000 users provide medical researchers?

Sage Bionetwork’s approach to informed consent was intriguing. The company has designed a mobile app that clinicians can use to build a consent tool.

The views, opinions and positions expressed by these authors and blogs are theirs and do not necessarily represent that of the Bioethics Research Library and Kennedy Institute of Ethics or Georgetown University.