Center for Medical Ethics and Health Policy

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

Master
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Project Description

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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 strategies that reflect their unique values, preferences and priorities.

The overall goal of the study is to use stakeholder-engagement methods to inform evidence-based guidelines to promote equitable participation and partnership in genomic discovery and translation.

Supported by: National Human Genome Research Institute

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Project Personnel

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Principle Investigator

Mentors

  • Amy McGuire
  • Bruce Korf (UAB)
  • Vence Bonham (NIH)
  • Suzanne Judd (UAB)
     

Scientific Advisors

  • Celia Fisher (Fordham)
  • Stephen Sodeke (Tuskegee University)
  • Ronit Elk (UAB)
  • Shauntice Allen (UAB)