# Developing Evidence-Based Guidance for Engaging Rural Residents in the Deep South in Genomics Research: A Stakeholder-Driven Perspective

> **NIH NIH K01** · BAYLOR COLLEGE OF MEDICINE · 2021 · $155,127

## Abstract

Abstract
The diversification of genomics research cohorts is a national priority intended to accelerate
research and improve individualized prevention, treatment and care. Concrete, tailored
strategies are needed to ethically engage various underrepresented populations to promote
equitable access to genomic discovery and translation. One region of the U.S. in which such
strategies are likely to be of particular importance is the rural South. U.S. residents in the rural
South experience persistent health disparities; have limited knowledge about genetics and
genomic science; are underrepresented in genomics research; and would likely benefit
substantially from scientific advances in genomics. Importantly, the structurally embedded
factors that hinder members of rural communities from accessing advances in health care—and
ultimately perpetuate health inequities—might similarly impair widespread, informed,
participation in genomics. However, the ethical, legal, and social implications (ELSI) of
conducting genomics research with residents in the rural South are not well-understood. As
such, there is a critical need to engage rural populations in the full spectrum of genomics
research to establish ethical frameworks and guidelines that reflect their unique values,
preferences and priorities. The proposed study employs stakeholder-engagement methods with
consideration to the ethical, legal, social and cultural contexts relevant to the lived experiences
of individuals living in the rural South to inform evidence-based guidelines that facilitate effective
translation of genomics research and discovery. This study consists of three phases, employing
a sequential qualitative research design engaging multiple stakeholders, including local
community members, potential study participants, and content experts throughout the research
process to integrate diverse perspectives. Drawing from the social, behavioral, and biological
sciences, this study has the potential to serve as a model to guide genomics research for other
medically underrepresented populations to ultimately identify best practices for community
translation of genomic discoveries.

## Key facts

- **NIH application ID:** 10106238
- **Project number:** 1K01HG011495-01
- **Recipient organization:** BAYLOR COLLEGE OF MEDICINE
- **Principal Investigator:** Faith Elizabeth Fletcher
- **Activity code:** K01 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2021
- **Award amount:** $155,127
- **Award type:** 1
- **Project period:** 2021-07-12 → 2024-04-30

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/10106238

## Citation

> US National Institutes of Health, RePORTER application 10106238, Developing Evidence-Based Guidance for Engaging Rural Residents in the Deep South in Genomics Research: A Stakeholder-Driven Perspective (1K01HG011495-01). Retrieved via AI Analytics 2026-05-24 from https://api.ai-analytics.org/grant/nih/10106238. Licensed CC0.

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