I recently had occasion to think fondly of a member of our PRIM&R community whom we lost in April: Alan Wertheimer, PhD. Alan was a senior research scholar in the Department of Bioethics at the National Institutes of Health, professor emeritus of political science at the University of Vermont, and a long-time PRIM&R faculty and conference planning committee member. He was also a cherished friend and mentor to me. He passed away April 10.
Ever the scholar and truth-seeker, Alan never hesitated to let me know—collegially, of course—if he disagreed with something I said. For instance, he wrote me a note about my Read more
To fulfill ethical requirements, each year, millions of people (Krall, 2009) engage in an informed consent discussion before joining clinical trials, weighing both possible risks and benefits of the trial participation when making their choice to take part in the proposed study Read more
By Avery Avrakotos, education and policy manager
In March, the Newborn Screening Saves Live Reauthorization Act of 2014 went into effect. The act, which is an extension of the Newborn Screening Saves Lives Act of 2008, reauthorizes nearly $20 million in funding and expands state-based infant screening programs. It also contains a controversial amendment that requires informed consent for any federally funded research activities using newborn dried bloodspots.
Infant screening programs have been in place in the United States for more than 50 years. The programs, which are Read more
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