By Vinisha Bhatia, research associate, Staff Development and Knowledge Management at Innovations for Poverty Action
As an IRB Coordinator for an international research and policy nonprofit, Innovations for Poverty Action (IPA), I had the opportunity to attend PRIM&R's IRB Administrator 201 course during the 2015 Spring Regional Meeting in April. My goal was to learn more about IRB administration and review processes in order to apply this knowledge to my organization's work in social and behavioral research in the international development sector. [...] Read more
By Lori Melichar, PhD, director, Pioneer Portfolio at Robert Wood Johnson Foundation
The systems that drive institutional review boards (IRBs) was last modified nearly a quarter century ago. That overhaul was before the internet and smartphones, and before the human genome was completed. Recently, new technologies such as ResearchKit, have emerged as game changers for patient engagement in research studies. Other studies that apply social network science, big data analysis, and personalized medical insight raise important new questions about how patient rights can and should be protected in this new [...] Read more
By Avery Avrakotos, education and policy manager
ResearchKit, an open-source software framework aimed at furthering our understanding of health and disease, provides researchers a tool to conduct research utilizing Apple's iPhone that developers hope will help revolutionize how that research is conducted.
First introduced at an industry event in March, ResearchKit consists of three modules: the first focuses on providing potential subjects with information about participation and obtaining subject consent; the second administers surveys using a pre-built user [...] Read more
by Athos Bousvaros, MD, Boston Children's Hospital
Athos Bousvaros, MD, and Susan Kornetsky, MPH, both of Boston Children's Hospital, recently created a comic book, titled Sophie's Science Project, to help teach children about medical research. Below Dr. Athos shares their motivation for creating the comic book and what they hope it will accomplish.
For children and adolescents to participate in pediatric clinical research, parental permission is needed, but the children themselves are also expected to provide assent. Assent is defined by the US Department of Health and Human Services as "a child's [...] Read more
Technology takes center stage in this week's Research Ethics Roundup. On Monday, Apple introduced a new open-source framework that could have significant implications for the research enterprise, while, on the same day, the Food and Drug Administration (FDA) released draft guidance aimed at clarifying the use of electronic processes to obtain informed consent.
Apple's ResearchKit Is a New Way to Do Medical Research: On Monday, Apple announced ResearchKit, an "open-source framework that lets medical researchers create diagnostic apps that tap into the screens and accelerometers on the iPhone." This article from Wired discusses the announcement and how the use of the framework could revolutionize research.[...] Read more