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

NIH RePORTER · NIH · K01 · $184,166 · view on reporter.nih.gov ↗

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
BAYLOR COLLEGE OF MEDICINE
Principal Investigator
Faith Elizabeth Fletcher
Activity code
K01
Funding institute
NIH
Fiscal year
2024
Award amount
$184,166
Award type
3
Project period
2021-07-12 → 2025-04-30