# Disability, diversity and trust in precision medicine research: stakeholdersengagement

> **NIH NIH R01** · COLUMBIA UNIVERSITY HEALTH SCIENCES · 2021 · $799,809

## Abstract

People with disabilities are estimate at 22% of the population and the largest health disparity group in the U.S.
Including them in Precision Medicine Research (PMR) is vital to attaining tailored scientific findings, assuring
health equity and upholding the equality of people with disabilities. Studies of racial/ethnic minorities suggest
that distrust of PMR thwarts fulfillment of these goals. Studies also found that discord in community members'
and researchers' views about components of trust may negatively impact research collaboration. People with
disabilities are likely to have both similar and unique issues of (dis)trust of PMR as other marginalized groups,
especially those from racial/ethnic minorities. Yet, no study to date has explored the sources of (dis)trust
in PMR among people with disabilities, nor their views about trustworthiness of PMR, a prerequisite for
building trust. It is also likely that people with disabilities and researchers will view key issues in trust and
trustworthiness differently, but no study has examined this issue. This study aims to 1) identify domains of
distrust in and barriers to trustworthiness of PMR among people with mobility, vision and hearing (MVH)
disabilities (most common disabilities in the U.S.), across racial/ethnic groups; 2) compare the views of people
with MVH disabilities, across racial/ethnic groups, and translational genomic (TG) researchers, the leaders of
PMR, about trust in and trustworthiness of PMR; and 3) develop evidence-based recommendations for building
trust in PMR among people with disabilities. To achieve these aims, we will employ Concept Mapping, a multi-
step process with mixed-methods design. We will conduct 1) 30 focus groups, stratified by disability-type and
race/ethnicity (Black/African Americans, Latinos, American Indian/Alaska Natives, Asian/Pacific Islanders, non-
Hispanic Whites) to explore sources of distrust and to identify factors affecting views on trustworthiness of
PMR; 2) online, national surveys with 4,500 people with MVH disabilities, oversampling racial/ethnic minorities,
and 250 TG researchers to examine systematically domains of (dis)trust in PMR and to gain comparative
insight about factors affecting trustworthiness of PMR. Based on our findings, we will then conduct an iterative
process to draft, revise and finalize recommendations through engagement with both stakeholder groups.
These processes will allow development of a nuanced conceptual model of (dis)trust in PMR and an actionable
roadmap for enhancing PMR trustworthiness among people with disability. The study employs a disability
community-based participatory research approach. It is led by an interdisciplinary research team, including
researchers and experts with lived experiences of disabilities and collaboration with national organizations of
people with disabilities. Study material, data collection, and findings will be disability-accessible and available
in plain language English, Spanish an...

## Key facts

- **NIH application ID:** 10259657
- **Project number:** 5R01HG010868-03
- **Recipient organization:** COLUMBIA UNIVERSITY HEALTH SCIENCES
- **Principal Investigator:** Maya Sabatello
- **Activity code:** R01 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2021
- **Award amount:** $799,809
- **Award type:** 5
- **Project period:** 2021-03-12 → 2024-06-30

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/10259657

## Citation

> US National Institutes of Health, RePORTER application 10259657, Disability, diversity and trust in precision medicine research: stakeholdersengagement (5R01HG010868-03). Retrieved via AI Analytics 2026-05-23 from https://api.ai-analytics.org/grant/nih/10259657. Licensed CC0.

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