Disability, Diversity and Trust in Precision Medicine Research: Stakeholders Engagement

Summary: People with disabilities comprise the largest health disparities group in the US. Their inclusion in precision medicine research is essential for health benefits to accrue to them and for upholding social justice by treating people with disabilities as equal members of society. Yet, people with disabilities are underrepresented in health research, including precision medicine research, though the reasons for this outcome are understudied. Research shows that trust is key for promoting ethical research and that distrust is a major barrier for participation of racial/ethnic minorities in precision medicine research. However, what constitutes trust and the factors affecting views on trustworthiness of precision medicine research among people with disabilities and translational genomic researchers are understudied, even as such views may be critical for disability inclusive precision medicine research. 

Our study engages with people with mobility, visual and hearing disabilities across racial/ethnic communities and with translational genomic researchers to close this gap. We will use a disability, community-based participatory research approach, and Concept Mapping, a multi-step process with mixed-methods design to develop a nuanced conceptual framework for understanding (dis)trust in PMR and an actionable, evidence-based roadmap for enhancing trustworthiness of precision medicine research among people with disabilities.

The study aims are to:

  1.  Identify domains of (dis)trust in and trustworthiness of precision medicine research among people with mobility, vision and hearing disabilities
  2. Compare sources of (dis)trust in and features of trustworthiness of precision medicine research among people with mobility, vision and hearing disabilities across racial/ethnic groups and between people with mobility, vision and hearing disabilities and translational genomic researchers
  3. Develop evidence-based recommendations for building trust in precision medicine research among people with mobility, vision and hearing disabilities.