Genetic Services in Appalachia

NIH RePORTER · AHRQ · R13 · $50,000 · view on reporter.nih.gov ↗

Abstract

PROJECT SUMMARY/ABSTRACT Although the role of genetics and genomics in healthcare has grown at an astounding pace with a tremendous psychosocial and economic impact, some populations have not equally reaped the benefits of these advances in genetic services. The Appalachian region, a mountainous region including all of West Virginia (WV), is disproportionately rural and medically-underserved, resulting in delayed stage of diagnosis and greater potential for prolonged morbidity and earlier mortality. Additionally, genetic services have been limited in rural, Appalachia, and particularly in West Virginia. Innovative models are needed to provide accessible genetic services to individuals in rural, Appalachia. Telegenetics (telemedicine genetic counseling) has been proposed as an innovative way to improve health care accessibility, with video telegenetics being the preferred method. Yet, lack of broadband access and challenges with physical assessment has posed some limitations to wide- scale adoption of telegenetics in rural, Appalachia. Further, non-traditional providers have been explored as a means of meeting the need for genetic services. The objectives of this conference series are (1) to provide an overview of current models of genetics services in the rural, Appalachian region; (2) to provide potential resources for genetics service delivery in the rural, Appalachian region; and (3) to establish a list of priorities for future genetics research. Our team has extensive experience in clinical genetic services both in terms of care provision and of research, and our application is uniquely poised to understand the potential of genetics in a rural, Appalachian population. Our planned seminar series will include 6 sessions. Sessions will include an introductory session with a discussion of genetics services in WV, sessions on genetic service delivery models at University of Kentucky and University of Pittsburgh, a session reviewing telegenetics resources through the New York Mid-Atlantic Consortium, a session discussing the role of nursing in genetic services, and a session on research about novel methods to provide genetic services in medically-underserved populations. Each session will have specific learning objectives. Our primary target audience will include patients and individuals who are engaged in working with the elevated risk population in the rural, Appalachian region. We will review program evaluations from participants in the program and from questions asked during the sessions. At the completion of this conference, we expect to set an agenda for service delivery and research in a medically- underserved population and will develop a manuscript reflecting on our lessons learned. This conference series will provide novel information on the promise of genetic service delivery for a rural and medically- underserved population.

Key facts

NIH application ID
10293943
Project number
1R13HS027928-01A1
Recipient
WEST VIRGINIA UNIVERSITY
Principal Investigator
Kimberly Michelle Kelly
Activity code
R13
Funding institute
AHRQ
Fiscal year
2021
Award amount
$50,000
Award type
1
Project period
2021-08-01 → 2022-07-31