Toward Justice and Community Empowerment in Genomics Studies on Sensitive Traits

Publication

Published on: December 21, 2024

Published in: The Hastings Center Report

Description: The authors provide an overview of past and ongoing efforts in community engagement in genomics studies and consider successes and opportunities for further improvement. They set out a vision for a more equitable and collaborative genomics where wider communities, including social, ethnic, and other communities that share a particular trait, are included in the research as peers and collaborators.

Engaging children and adolescents in the design and conduct of paediatric research

Publication

Published on: November 11, 2024

Published in: Frontiers in Pediatrics

Description: A recent Frontiers in Pediatrics article, co-authored by Barbara Bierer and Elisa Koppelman of the MRCT Center, emphasizes the importance of directly involving children and adolescents in pediatric research design and execution, highlighting the benefits of incorporating their perspectives alongside those of parents and guardians. The authors provide theoretical, ethical, and practical recommendations for systematically engaging young participants to enhance the relevance and effectiveness of clinical studies.

Towards A National Action Plan To Improve Representation In Clinical Trials

Publication

Published on: November 6, 2024

Published in: Health Affairs

Description: In the Health Affairs article “Towards A National Action Plan To Improve Representation In Clinical Trials,” co-authored by the MRCT Center’s Barbara Bierer, the authors address the critical need for increased diversity in clinical research to enhance health outcomes for underrepresented populations. They propose a comprehensive national strategy that includes policy reforms, community engagement, and the integration of diverse perspectives in trial design and implementation.

Creating educational materials about clinical research data for patients and the public

Publication

Published on: September 2024

Published in: Medical Writing

The article discusses the importance of creating educational materials to improve public understanding of clinical research data, particularly in light of misinformation during the COVID-19 pandemic. It emphasizes the need for transparency and clarity in addressing issues like data privacy and the ethical sharing of information. Modern tools such as videos and infographics can make clinical research more accessible and build trust with patients and the public. 

The PubPeer conundrum: Administrative challenges in research misconduct proceedings

Publication

Published on: August 13, 2024

Published in: Accountability in Research

Description: Mark Barnes and colleagues at Ropes & Gray, and Barbara Bierer published an article that discusses the impact of PubPeer, an online platform that publicizes suspected data integrity concerns, on the research misconduct process and the institutional challenges of handling anonymous comments within current regulations. The authors propose processes to ensure that credible allegations are rigorously assessed while reducing burden on institutions tasked with their investigation.

Pediatric drug development issues during public health emergencies

Publication (book chapter)

Published on: August 2024

Published in: Essentials of Translational Pediatric Drug Development (Academic Press)

Description: Mariana Kruger, Moji Adeyeye, and Barbara Bierer co-authored a book chapter entitled “Pediatric drug development issues during public health emergencies” in the book Essentials of Translational Pediatric Drug Development. In their chapter, the authors outline the regulatory and ethical issues that arise during public health emergencies, focusing on pediatric drug development.