Bioethics Blogs

Opting Out: Who’s Protecting Human Research Subjects Online?

by Anita Pascoe, MS, CIP, project coordinator at Intermountain Healthcare

Time has flown by since December’s 2014 AER Conference. The holidays came and went, and, believe it or not, spring has announced its extremely premature arrival here in Salt Lake City. Two months post-conference, I am, however, still contemplating several of the key themes discussed during the four days in Baltimore. Topping my list of memorable conference moments is John Wilbanks’ keynote address, which hit home for me on a personal as well as a professional level.

Wilbanks noted that the nature of our global research enterprise has forever been altered because of the widespread use of mobile technologies, which enable easy and inexpensive access to myriad amounts of data. PRIM&R as a whole clearly agreed, as several other conference sessions were dedicated specifically to addressing issues related to the exponential growth of real-life, real-time data collection enabled by mobile technologies.

One of Wilbanks’ most poignant points, however, was his description of how our contemporary culture endorses the practice of blindly clicking “I agree” or “OK” to online user agreements or disclosure documents without reading so much as a single word. Hence, Wilbanks concluded, cheap data amassed daily by modern technologies intersects with efforts to protect consumers from potential risks and harms, which in turn also ends up being a concern for researchers.

As I mentioned in one of my posts during the conference, I recently acquired my first smartphone. Wilbanks’ remarks therefore had particular impact on me. I had never focused any personal attention on the phenomenon of “blindly agreeing” online.

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.