Research participants who discuss their research participation online may unintentionally disclose information that increases the risks of the research to themselves or others. These risks include unblinding study participants or the research team, communicating incorrect information, or inadvertently licensing participant behaviors that conflict with study requirements, each of which may potentially threaten study integrity and/or participant safety. Read more
This month's Research Ethics Roundup covers the latest in right-to-try, social media data access, FDA extrapolation of drug indications, return of genetic results, and a lawsuit about USDA inspections. Read more
The new PRIM&R Knowledge Center houses a wide range of resources to keep you inspired and informed for your work in research ethics and oversight! As you familiarize yourself with the Knowledge Center, we want to direct you to some of our top resources. First up in this blog series, our Discussion Guides, which now available individually in the Knowledge Center to help you deepen your understanding of journal articles and other resources by providing a guide for individual review or fostering group discussion. Read more
data-rich networked information technologies are unique in that they represent people’s lives and activities, bridge multiple dimensions of a person’s life, and are often collected, aggregated, exchanged, and mined without them knowing. We call this data “pervasive data,” and the increased scale, scope, speed, and depth of pervasive data available to researchers require that we confront the ethical frameworks that guide such research activities. Read more
Approximately 80% of the US population has a social media account. Social media can be a powerful research tool for recruiting subjects and for conducting research. As regulatory professionals tasked with protecting research subjects, it’s important to understand the unique risks and benefits of social media use for research.Luckily, at PRIM&R’s 2018 Advancing Ethical Research Conference, there was a session devoted solely to the complex issues related to research on social media. Read more
