NASEM has impaneled an impressive committee of experts to evaluate current and future uses of population descriptors in genomic research. This is going to require a deeply challenging examination—a communal reckoning, really—of how terms like race, ethnicity, and ancestry are perceived by diverse stakeholders in the genomic research community and the public at large. Read more
The rollout of testing for sickle cell disease (SCD), implementation of mandatory screening laws, and subsequent stigmatization of African Americans have all had impacts on the Black community’s view of research and testing. For Black History Month, we want to highlight this critical story that most likely helped shape the climate of medical and research mistrust. Read more
A multi-disciplinary research team at Columbia University is conducting a study titled "Individualized Therapies for Genetic Disorders" to better understand the perspectives of stakeholders on issues raised by individualized gene therapies that involve only one or a very small number of patients. IRB members are invited to participate! Read more
Fall is now upon us, and with fall comes the fall Certified IRB Professional (CIP) exam season and the Advancing Ethical Research (AER) Conference. For those who took the exam, for the first time or to re-certify, I hope the process was rewarding and meaningful! For those of you who attended AER17, I hope you found it as exciting and useful as I did. Read more
Poster presenters at our annual conferences often continue their research or program long after the event. Read on for more from Deirdre Lombardi, MPH, CPH, CHES, Challace Pahlevan-Ibrekic, CIP, MS, Brenda Ruotolo, BA, CIP, and Alan Teller, CIP, who presented a poster titled Development of a Specialized IRB for Genetics and Genomics Research, at the 2016 Advancing Ethical Research Conference (AER16). Read more
