F07 - Adults with Developmental Disabilities and Research: Ethical, Legal, and Social Implications (ELSI) Solutions to Inclusion as Co-Researchers and Research Participants

Tuesday, November 19, 2024

3:30 PM - 4:45 PM PT

Location: Room 443

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Adults with developmental disabilities experience substantial health disparities. Enhancing research and health equity through community-engaged approaches is hindered by the absence of easily comprehensible research ethics education and inclusion strategies. Instead of prioritizing responsible inclusion based on justice, existing frameworks often rely on protections tied to perceptions of vulnerability, perpetuating enduring obstacles to these objectives. Speakers will present our new research ethics educational program for community researchers with developmental disabilities, including our multi-stakeholder engagement process and findings from our systematic review on approaches to consent/assent for adults with developmental disabilities.

Learning Objectives:

Describe challenges to include adults with developmental disabilities as community researchers and research participants
Explore a new resource to educate community researchers with developmental disabilities
Discuss approaches to consent/assent with adults with developmental disabilities that integrate Belmont and Disability Rights principles

Speaker(s)

EA

Emily E. Anderson, PhD, MPH (she/her/hers)

Loyola University Chicago Stritch School of Medicine
<i>Journal of Empirical Research on Human Research Ethics</i>., <i>Narrative Inquiry in Bioethics</i>, and AJOB Empirical Bioethics
Maywood, IL

Session Slides
Benjamin C. Silverman, MD

Mass General Brigham
Boston, MA

Session Slides
Susan Passmore, PhD (she/her/hers)

School of Nursing, University of Wisconsin - Madison
Madison, WI
Brittany M. St. John, PhD, MPH, OTR/L (she/her/hers)

University of Washington
Seattle, WA

Session Slides