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
TAG ARCHIVES FOR research with children
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
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
Each time a research protocol involving children comes to us for review, my committee members and I look to one another for help deciding how to balance obtaining potentially valuable information that might one day impact the lives of other children with the delicate exercise of approving a protocol involving children. Often, we don’t have the answer within our ranks, and do not know who to look to for assistance. We ask ourselves: "Who can help us now?" Read more
by Athos Bousvaros, MD, Boston Children's Hospital
Athos Bousvaros, MD, and Susan Kornetsky, MPH, both of Boston Children's Hospital, recently created a comic book, titled Sophie's Science Project, to help teach children about medical research. Below Dr. Athos shares their motivation for creating the comic book and what they hope it will accomplish.
For children and adolescents to participate in pediatric clinical research, parental permission is needed, but the children themselves are also expected to provide assent. Assent is defined by the US Department of Health and Human Services as "a child's [...] Read more