by Elizabeth White, program manager, United States Department of Energy (DOE)Active participation and input from community/unaffiliated members is critical to any institutional review board (IRB). How do we ensure that community members feel empowered and educated in order to freely express their opinions on proposed research? This was the topic of a workshop organized by the University of Southern California (USC) and the DOE in December 2010. The pre-conference program, Enhancing the Contributions of Community IRB Members, was held in conjunction with the 2010 Advanced Ethical Research Conference. It was attended by prominent individuals in the field of human subjects protections and community [...] Read more
TAG ARCHIVES FOR guest blogger
by Wendy Tate, PSM, CIP
On June 1, 2011, I descended upon Washington, DC, with about 660 of my Department of Veteran's Affairs (VA) and university colleagues responsible for the conduct of research at a VA hospital or health care system.
Simply put, human subjects research at the VA must improve the status of veterans. The purpose of this conference was to discuss the role of privacy and information security in human research projects within the VA system. Each VA institution that holds a Federalwide Assurance (FWA) was invited to have it’s assistant chief of staff, research, administrative officer, IRB administrator, information security officer, privacy officer, and research compliance officer in [...] Read more
by Argelis A. Ortiz, MSW, University of Southern California, Social/Behavioral IRB Community Member
The night before the first meeting where I would serve as a community member on an institutional review board (IRB), I feverishly reviewed research analysis and statistics books, read and re-read the federal regulations (45 CFR 46), and Googled the meaning of “common rule.”
The next morning, I ate breakfast and was impressed by my newfound ability to recite a list of vulnerable populations in alphabetical order: children, human fetuses, neonates, pregnant women, and prisoners. I even made a song out of it, so I would remember when it came time [...] Read more
Over the years, I have attended many PRIM&R conferences—the programming is always strong, the speakers excellent, and the content cutting edge. However, these things are not what keep me coming back.
Working in the field of human subjects protections, I am constantly immersed in gray—no one rule can be applied to every situation and no one situation boils down to one rule. In the absence of black and white answers, I am endowed only with the knowledge of core ethical principles and the support of colleagues and peers. It is this very support, which is found in abundance at PRIM&R’s conferences and through the membership community that keeps me coming [...] Read more
PRIM&R is pleased to introduce you to Barbara Brenner, author of the blog, Healthy Barbs. Barbara is the former executive director of Breast Cancer Action, and is living with amyotrophic lateral sclerosis (ALS). Having spent the past 15 years working on topics related to healthcare and illness, Barbara continues to stimulate critical conversations, and to encourage critical thinking about mainstream coverage of health care and medical issues. Today, we are pleased to share with you an excerpt from her blog:
Given the tiRead more