TAG ARCHIVES FOR research with children

14
Feb2019

The 2018 Advancing Ethical Research Conference (AER18) was my second PRIM&R conference, and this year I came armed with questions for specific organizations and agencies. At the top of my list was a question regarding the 2015 NIH Genomic Data Sharing (GDS) Policy: When children’s data is submitted to a national genomic data sharing repository, such as the database of Genotypes and Phenotypes (dbGaP), what are the consent expectations when those subjects reach the age of majority?  Read more

12
Nov2018

I was very excited to learn of the opportunity to become a member of the Blog Squad for the 2018 Advancing Ethical Research Conference (AER18). I am the Research Director for the Department of the Emergency Medicine and serve as the Vice Chair for the IRB at The Lincoln Medical Center in The Bronx, New York. Initially, I became familiar with the IRB as a Principal Investigator, when I conducted a research project to fulfil the requirement for Pediatric Emergency Medicine (PEM) fellowship training. I quickly realized that research is vitally important to for the advancement of medical science and I also understood that human subjects protections, particularly in children and other vulnerable populations, is critical. As I practiced in a neighborhood of diverse and low-income households, I appreciate the importance that subjects’ rights not be violated, and that they not be unduly coerced to participate in research. It is also important that participants enter into research studies voluntarily and with sufficient information and understanding. Read more

20
Jun2018

On May 10, PRIM&R hosted a webinar, Forward-Looking Strategies for IRBs in the Genomic Age: Preparing for Shifting Concepts of Identifiability, to provide expert input on the impact of breakthroughs in genomics research on traditional notions of identifiability.The panel consisted of Jiayan Chen, JD, a partner at McDermott Will & Emery, LLP, and Suzanne Rivera, PhD, MSW, vice president for research and technology management at Case Western Reserve University. After the webinar, Ms. Chen and Dr. Rivera responded to some of the attendee questions time didn’t permit us to address live. We’re pleased to share those responses with the readers of Ampersand. Read more

2
May2017

Because of the intensity of my institution’s human research program, I always have to strike a balance, upon returning from a PRIM&R Advancing Ethical Research conference, between wanting to immediately focus on incorporating what I’ve learned—policy revisions, procedural changes, and staff/member training ideas—and having to jump instead into the usual fray of trying to keep up with “normal” responsibilities. As with so many things in life, compromise and balance come into play. Read more

8
Mar2017

In February, PRIM&R hosted Research with Children and Adolescents in Elementary and Secondary Schools, a webinar presented by Shannon Sewards, MA, CIP, and Julie Slayton, PhD, JD. This webinar provided strategies for IRB administrators and staff who work closely with research in public school settings to determine IRB review and risk levels for protocols, understand and implement best practices for research in the classroom, and support and guide investigators on regulatory and logistical matters. Read more