Sources of distrust in precision medicine research: Findings from a focus group study with adults with disabilities.

Résumé

People with disabilities comprise a large population in the US and experience significant health disparities. Their inclusion in precision medicine research (PMR) has clinical, public, and social justifications and is crucial for them to benefit from the scientific advancements of PMR. Yet, research indicates that adults with disabilities are underrepresented in general (non-disability-specific) PMR and that distrust may affect participation decisions. However, the sources of distrust in PMR among adults with disabilities are understudied, a first necessary step toward gaining trust. We report findings from 21 focus groups that explored the sources of trust and distrust in PMR among US-based adults self-reporting as being blind/low-vision, deaf/hard of hearing (HoH), or with mobility disabilities. Data analysis revealed six key sources of distrust in PMR: (1) negative interactions with clinical staff, (2) healthcare system barriers, (3) negative societal attitudes, (4) discriminatory behaviors in daily life, (5) group harm, and (6) (in)accessibility. We identified a strong spillover effect from experiences in clinical care, the broader healthcare system, and daily life settings to PMR and found that the sources of distrust were often intertwined. Our analysis also found differences by disability subgroups and that disability experiences intersect with other forms of marginalization to affect trust in PMR. We contextualize our findings in light of the literature on disability studies and the ethical discourse on civic responsibility for research participation, highlight key issues that could inform efforts to build trust, and point to possible future research.