TAG ARCHIVES FOR research with children

28
May2020

Participate in a research study on the ethics of phase I pediatric oncology studies and net risk pediatric research

Tags:
28 May
No comments

Researchers in the Department of Bioethics at the National Institutes of Health invite IRB members to participate in a short study related to pediatric research ethics. The purpose of the study is to explore and compare the views of members of the general public and the views of members of IRBs on various types of medical research with children. The information collected is intended to inform how IRBs evaluate the ethical acceptability of proposed medical research in the future. Read more

14
Feb2019

Minding the (db)GaP: Age of Majority and the NIH’s GDS Policy

Tags:
14 Feb
No comments

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

AER18 Blog Squad Intro Post: Muhammad Waseem

Tags:
12 Nov
No comments

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

Webinar Follow-Up: Forward-Looking Strategies for IRBs in the Genomic Age

Tags:
20 Jun
No comments

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

Balancing the New and Novel to Assess What We Learned

Tags:
2 May
No comments

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