NED 2026

In this session, attendees will learn about ethical benchmarks for clinical research and practice applying them to real-life case examples, with a focus on the role of researcher-participant interactions

Learning Objectives:

• Describe eight benchmarks for ethical clinical research
• Discuss how empirical data illustrate challenges with informed consent
• Describe the role of researcher-participant interactions in the ethical conduct of research

Presenter:

Kate MacDuffie, PhD, MA
Associate Research Director, Treuman Katz Center for Pediatric Bioethics and Palliative Care, Seattle Children’s Research Institute
Assistant Professor, Department of Pediatrics, UW School of Medicine

Dr. MacDuffie’s research is focused on understanding the ethical and social impacts of advances in neuroscience on children and adults affected by psychiatric, neurological, and neurodevelopmental disorders. In her approach, she seeks to draw in and learn from the voices of those who are most likely to be impacted by cutting-edge science, but who are not often included in the design, conduct and dissemination of such research. She uses a combination of qualitative, quantitative, and conceptual methods with the overarching goal of embedding the perspectives of research participants and other impacted stakeholders into the practice and process of research.

This session will discuss health inequities faced by participants with limited English proficiency, and how the research coordinator can confidently enroll individuals from all backgrounds. This session will also address practical approaches to difficult conversations with PI’s about unequal enrollment strategies. The research coordinator plays a pivotal role in developing a culture of competency, and creating an environment that benefits all participants.

Learning Objectives:

1. Understand the benefits of translating written materials for those who have limited English proficiency
2. Understand approaches to access translation services at one’s institution for study recruitment and enrollment

Presenter:

Alexandra Quinn, BA
CRC-1
Laguna Lab, McGarry Lab
Center for Respiratory Biology and Therapeutics (CRBT)
Pulmonary and Sleep Medicine Division
Seattle Children’s Research Institute & Seattle Children’s Hospital

Ali graduated from the University of Colorado Boulder in 2020 with a BA in Psychology. After graduating, Ali worked in a locked facility with male youth offenders serving sentences for committing violent crimes. In December 2021, Ali moved to Seattle to work 1 on 1 with high needs Special Education students in WA state schools using the Emotion Focused Therapy model. In 2022, Ali transitioned into a CRC role at a private research site in Bellevue, conducting phase 3 pharmaceutical trials for patients with psychiatric and neurologic conditions. Ali has worked at Seattle Children’s Hospital for a year and a half in Dr. Terri Laguna and Dr. Meghan McGarry’s labs as the primary CRC for both investigators. The Laguna and McGarry Labs study pediatric Cystic Fibrosis from a microbiological standpoint, as well as health inequities faced by individuals with Cystic Fibrosis. Ali is an active member of the Science Insights Committee, the SCRI Women’s Council, and The Pulmonary and Sleep Medicine Division EDI Task Force and the Pulm Wellness Committee. Outside of work, Ali is a volunteer on the City of Seattle Victim Support Team in the Crime Survivor Services Department, assisting survivors of domestic violence.