In reflecting on the SBER19/AER19 opening remarks by PRIM&R's Executive Director, Elisa A. Hurley, PhD on the relevance of the Belmont Report today, I feel that the Belmont Report continues to be relevant and maybe more applicable than we think dat-to-day, especially for communities intertwined with their members. Though the Belmont Report is an old document, it can always be seen with new eyes and new perspectives. Read more
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I recommend all young professionals attend at least one PRIM&R Conference. PRIM&R has become an ever-growing repository of knowledge for research ethics and compliance, and the attending a conference will refresh your passion for research ethics. I felt my career path strengthening by establishing connections with likeminded individuals nationally and internationally. The willingness to collaborate, share, and advise could easily be witnessed in each session, break, and lunch period. I established new relationships that helped me understand the history of research ethics and IRBs in higher education. Operating a single staff IRB program can feel very isolating; the connections and knowledge gained from attending the PRIM&R SBER/AER Conference reduced the isolation I felt and gave me hope for the future of research ethics. Read more
Since I started working for our IRB in 2010, we have seen an increase of studies using software and medical apps. The uses of the software vary greatly and involve using software to monitor sleep, physical activity, diet diary, mental health among many other uses. This makes the application of device regulation quite confusing, and discussion, with case examples, among IRB professionals can be incredibly useful in exploring how best to apply the regulations and guidance. Read more
At PRIM&R's 2019 Advancing Ethical Research Conference, Ivor Pritchard, PhD, discussed the relation between public, private, and social information in his session, The Secrets of Big Data: Public, Private or What? (B15). Dr. Pritchard asked, what are the risks and confidentiality provisions for social information?
First, the concept of social information can be described as neither publicly nor privately available, but information provided in controlled settings. As an example, data gathered from a classroom or an online chatroom are neither public nor private in that the subject is a) not alone and b) not everyone has access to that environment. Then, what are the risks to subjects in social experiments (experiments conducted in public settings like [...] Read more
During the first day of the 2019 Advancing Ethical Research Conference, I had the good fortune of hearing Janine Austin Clayton, MD, from the Office of Research on Women's Health, an NIH organization that was created with the goal of finding answers on why certain diseases affect women more than men. The data she shared on health gaps between men and women should spark a fire in all of us to encourage our government and employers to do more. Read more