Advocacy and Allyship in ELSI: Opportunities and Challenges

October 14, 2022 -
12:00pm to 1:00pm

Kyle Brothers, MD, PhD 
Professor of Pediatrics, University of Louisville and Norton Children’s 

Shoumita Dasgupta, PhD 
Professor of Medicine, Boston University School of Medicine 

Robert Cook-Deegan, MD  
Professor, School for the Future of Innovation in Society, Arizona State University 

Abstract: Objectivity is a weight-bearing pillar in scientific inquiry, a norm to ensure that research and its outcomes are “value free” and unaffected by subjective value judgement. Yet ELSI research, as a field, is also poised to engage, take stands, and advocate for science-based policies and courses of actions that respond to societal needs. ELSI researchers and professional genetic associations face vexing questions about how to balance the two goals and responsibilities, especially amid intense political polarization. What are the responsibilities of individuals and organizations involved in ELSI research? How are topics for collective policymaking selected, developed, and implemented? What are the limitations and challenges in building like-minded coalitions and influencing practice? What are the risks and benefits associated with advocacy in ELSI and the trade-offs between them? Building on real-world events, such as the Dobbs decision and Buffalo shooter’s manifesto, and statements by professional genetic organizations such as the American Society for Human Genetics and Association of Professors of Human and Medical Genetics, this webinar will explore the value, importance, upsides, and downsides of advocacy and allyship in ELSI research. 

ELSI Hub Friday Forum sponsored by NHGRI 

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