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Evaluation On-Demand Video

2024 PRIM&R Annual Conference

Advancing Equity and Justice

Populations Requiring Additional Protections

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
Human Subject Research - HSR Call for Session Proposal - CSP Deep Dive Series Live Session Recorded CIP Accredited
CLICK HERE to view captioning for this session! 

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