# 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 · 2024 · $184,166

## Abstract

ABSTRACT
Introduction: The diversification of genomics research cohorts is a national priority intended to accelerate
research and improve individualized prevention, treatment and care. Thus, robust, multi-phased stakeholder
engagement processes are needed to ethically engage various underrepresented populations to promote
equitable access to genomic discovery and translation. Given the unique historical, social, cultural, and ethical
context germane to conducting research with underserved communities in the rural South, there is an urgent
need to examine and characterize rural residents’ views related to genomics research.
Methods: This study employed a qualitative approach for a bi-directional education and discussion session
with the Community Institutional Review Board (IRB) in Macon County, Alabama (n=6) prior to facilitating
community engagement (CE) studios. CE studios were conducted with Macon County residents (n=22) to elicit
their views about regional and national genomics research studies, bio-specimen collection, biobanking,
informed consent, return of results, and ongoing study engagement. Preliminary themes from the CE studios
were determined through a conventional content analysis process. This preliminary data will be presented back
to the community for their feedback and results will be finalized. The final phase of the study will consist of
deliberative panels where CE studio findings will be presented back to the community through structured
discussions that will focus on best practices for engaging rural residents in all phases of genomics research,
privacy and fairness in the use of genetic information, informed consent, return of results, and dissemination of
study findings. Recruitment for deliberative panels is currently underway.
Results: Preliminary findings from CE studios with Macon County residents yielded five themes which include:
1) Family History/Medical History - the lack of family history, medical history, and knowledge/access to genetic
testing, 2) Trust, Transparency, and Visibility - reduced confidence and suspicions in research studies, medical
professionals, genetic testing, and individuals that do not racially identify with them, and the media, 3) Lack of
Resources - minimal access to hospitals, job opportunities, and optimal technology, 4) Communication and
Follow-up - researchers learning about their community and returning with study results that clearly inform and
educate the community, and 5) Medical Approaches - having access to 24/7 healthcare and precision
medicine. In the final phase, CE studio findings will be presented to deliberative panels to inform genomics
research priorities.
Conclusion: Engaging rural populations in the South in the full spectrum of genomics research to establish
ethical frameworks and guidelines that reflect their unique values, preferences and priorities is a national
priority. CE studios offer an important engagement strategy to promote ethical inclusion of medically
un...

## Key facts

- **NIH application ID:** 11059709
- **Project number:** 3K01HG011495-03S1
- **Recipient organization:** BAYLOR COLLEGE OF MEDICINE
- **Principal Investigator:** Faith Elizabeth Fletcher
- **Activity code:** K01 (R01, R21, SBIR, etc.)
- **Funding institute:** NIH
- **Fiscal year:** 2024
- **Award amount:** $184,166
- **Award type:** 3
- **Project period:** 2021-07-12 → 2025-04-30

## Primary source

NIH RePORTER: https://reporter.nih.gov/project-details/11059709

## Citation

> US National Institutes of Health, RePORTER application 11059709, Developing Evidence-Based Guidance for Engaging Rural Residents in the Deep South in Genomics Research: A Stakeholder-Driven Perspective (3K01HG011495-03S1). Retrieved via AI Analytics 2026-05-23 from https://api.ai-analytics.org/grant/nih/11059709. Licensed CC0.

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